Hello and welcome to the Fibromyalgia/CFS forum on MedHelp. This forum is a place for people to come and share experiences with FMS and CFS. Some of you may have a diagnosis from your doctor, some of you may be seeking an answer for undiagnosed symptoms and some of you may be a relative or friend of one who is suffering. This is a great place to learn more and to gain support from others who suffer as well.
In addition to the community here, MedHelp also offers tools to help you and your doctor in your road to wellness. Fibromyalgia and CFS can be so intricate and can have so many different symptoms. Due to this, it is very helpful that MedHelp offers health trackers for us to utilize. We can track our progress and especially our flare ups. Below are just a few trackers that I find useful.
MedHelp also offers a plethora of “encyclopedia style” information available through the Health Topics tab at the top of the page. If you follow the links below you can learn more about Fibromyalgia and CFS, both topics of which are available on MedHelp.
Hello, all. I'm new in this community, but not to medhelp which helped me with a terrible tramadol dependency which I acquired from taking them for pain. Anyway, I was misdiagnosed for about 6 or 7 years by at least 4 doctors including a respected rheumatologist and my quality of life was pretty much dismal with joint pain occupying my every waking moment until a new physician I saw for the first time about 2 months ago nailed it on my first visit to him. When I heard "fibromyalgia" I was puzzled because I knew precious little about this disorder and after I researched it, I was extremely skeptical and a little annoyed because there is apparently quite a bit of confusion about it as well as a liberal dose of implication that it is psychogenic. My annoyance was compounded by the fact that the drug sample that he gave me, savella, is a SNRI which, as I did know, were a class of drugs used to treat depression. I knew I wasn't depressed and had had bad experiences before with being prescribed them based on past misdiagnoses of depression as the etiology of my pain. however, I gave the new doctor the benefit of the doubt and tried the savella and my pain vanished almost immediately. I'm having some side affects, but they seem to be gradually diminishing. I've been on it for about 2 months and it's still freaky to realize that there's no constant pain.
Does anyone know of fibromyalgia spontaneously disappearing, or will I be on these pills for the rest of my life? I will gladly do it if I have to, but I'm curious to know if there's a chance.
Welcome to the forum! And thanks for being the first to post and break the ice so to speak. Your story is not unlike most of us who have Fibromyalgia and/or CFS.
I was 17 when I first was diagnosed with sciatica and it wasn't until I was 31 when my foot was completely numb that I was able to convince a doctor to take an X-Ray of my lower back, which started a domino effect of MRIs and testing. I learned that I have degenerative disc disease, osteoarthritis in my spine, minor scoliosis and nerve damage- I even had a shoulder surgery on a bone spur because I kept getting tendinitis and the doctors couldn't cure my arm pain. It wasn't until after that surgery was unsuccessful (at age 32) that I "ended up" finding a great Rheumatologist who knew what to look for. I was in pain all of the time, I was exhausted and stressed.
I will tell you that I have had this disease since I was in my late teens and Fibromyalgia can go into remission with the proper care, exercise and with good stress management, but it will never go away for good. I have come in and out of pain throughout my life. One day doctors will have the mystery of the disease figured out (hopefully sooner than later), but for now, I am content with belief because I can finally get help.
Also, I think what is going on in your environment is just as important as what is happening in regards to your health care management choices. You could be exercising five days a week, eating right and taking the right balance of vitamins and medications, but if you have a stressful job or a bad relationship at home that you are not managing, your health and your fibromyalgia can definitely flare up. It's all a matter of balancing things- making sure you are doing everything you can to stay physically and emotionally satisfied.
Thanks again for joining us here. I'll be looking forward to future communications.
Thanks for the reply, Dusty. I appreciate it very much.
After hearing your story, I'm convinced that there are many more people who are not being diagnosed. I remember my mother complaining about joint pain for decades, but she always attributed it to arthritis, and I always assumed it was just a normal part of aging.
I feel really fortunate that I've responded so well to the first drug I was given, the savella, but I also have heard that it doesn't work the same for everyone. Also, i've heard that fibro is less common in males, which might explain why it was not considered for so long in my case.
Anyway, thanks again for hosting this forum. It feels better being around others who can appreciate what you're going through because goodness knows, not many people - doctors and family members included- really understand the depth of the pain and how it interferes.
Hi, I was diagnosed with FM about 5 years ago though I think it may have started a few years before that.
I discovered it after getting severe muscle spasms in my neck which were spurred on after I started doing spinning classes. I tried all sorts of meds (and gave up the spinning) but have only found a solution for the past 2 years. I take a product called Efexor and so far, so good.
Until this week when I suddenly got a terrible calf muscle cramp in the night. The pain was so bad it made me physically ill and for the past 2 days my entire leg is aching as if the muscle was bruised. I have been told to take Magnesium and Potassium to combat these cramps. I had them years ago (which confirms my suspicion that I've had Fibro for longer than I thought) but they've been absent for a long time.
This week the weather has been unusally cold and very wet here where it should be rather hot as it's Summer here now. I understand that extreme changes in weather can affect FM too so this could have brought all this on.
This is such a complex condition that brings new challenges all the time so I'm really glad to have found a place to talk to others in the same position as me. So thank you for this forum.
Effexor is also in the same class of drugs as Savella and Cymbalta- all SNRIs, which are used commonly to treat Fibromyalgia, so it makes sense that it's been helping you. I tried it years ago, and it caused me anxiety, but I tend to be more of a high strung Fibromyalgic. Every drug works a little differently on every one and it's nice that science keeps pushing forward to create better drugs to treat the disease.
I also had a bout with severe muscle cramps in my leg, and it also led to atrial fibrillation and I had to go to the ER. They found that I had low levels of potassium. After that incident I have faithfully taken a multi-vitamin every night before bed and an over-the counter potassium supplement (with my doctors approval of course). I do not have trouble with cramps like that anymore. In following bloodwork, I have found that I have a problem retaining potassium in my system for some weird reason unknown. My levels are always at the very bottom end of normal even with the supplements I take. You may want to consider some vitamin supplements as your idea is very good. Dehydration can also cause cramps.
The weather really does affect us too. We are in Fall here where I live and looking forward to Winter. A low pressure system has moved in, so my body aches very bad. I have to change my treatment plan which includes exercise ideas for these months, so I can keep my mind and body happy.
Thanks again for joining us FMsufferer. It's nice to meet you!
I believe that I have had fibromyalgia for at least 17 years although I wasn't really diagnosed with it until about maybe 4 years ago. But even to this day, I have never been put on anything more than ibuprofen and tryptophan. I also have noticed over the past year or two that my system seems to get used to a medication very quickly and either the drug dosage has to be adjusted or it has to be changed to something else. I also have sciatica and scoliosis as well as arthritis and diverticulitis, chronic bronchial-asthma, carpal tunnel, tmj, spurs in both of my feet, a torn rotator cuff probably caused by helping my son through a seizure or two. I have gotten to the point where I can't walk without help when I first wake up and try to get out of bed. I am only 31 years old and have been using a cane occasionally for about 3 years now. I seem to get really bad and unable to function when the weather is really bad. Cold,damp and freezing weather is what I can't function in. I was getting cortisone shots for my shoulder but had to stop for now due to side effects but may have to start getting them again soon. I am probably going to have to go for surgery if it's not too late. I found that if the cortisone shots took properly, that I would get some sort of relief throughout my whole body. But at least half of them didn't take so I'd have to go for another.
I remember when I was around 18 years old, that I'd get these terrible muscle cramps in my neck and shoulders and I'd literally have people rubbing my neck and shoulders but also lightly punching my back where it hurt because it would help to release some of the muscle knots. I loved it. For the past two weeks, I was in a lot of pain because it was going to rain. The other night, it rained for a day and a half. After the rain passed, I felt better until this morning. My neck and shoulders really hurt and so does my back from top to bottom. I am trying to stretch to try to help relieve my muscle aches but so far nothing. I also find to that if I sleep for too long, I get migraines and feel worse for sleeping more than I usually do which is maybe 8 hours but most time, less than 6 hours. I find that if I sweep my house and it may take me an hour or two of picking things up and sweeping all of my floors and carpets, I pay for it for like the next week or two. I am unable to function physically. I do suffer from depression from time to time but I try to control that by getting involved in things and keeping busy. I feel so bad for my children because they can hardly ever have their fully capable mom around due to this stupid disease. I have three children. I have looked up the symptoms of fibromyalgia and have realized that I have about 90-95% of the symptoms and still feel that I have to be this supermom because my kids and husband deserve it. I have no one else to talk to about this except for my sister who also has fibromyalgia. She is the only one who truly knows what pain I am going through. But she has a doctor who is compassionate and sends her for all sorts of testing and doesn't mess around. But they live about three hours away and I know for a fact that I wouldn't be able to handle the drive like that. I can go one way but not both in one day. My kids would miss to much school and I would miss to much work. I only work as a lunch aide in my daughters' school. This only gives me a hour a day, five days a week. With house work and raising kids on top of everything, it is physically and mentally and emotionally exhausting! I am in the midst of applying for disability and I am thankful that my physician is willing to fill out the paper work but he is new as my family doctor so I have to start all over again with the testing gig.
Well, I think that I've probably talked for way too long. I don't remember ever posting here before. Maybe I have but I don't know. If there is anyone out here who can help and or give advice on anything, I would be greatly appreciative. I also agree about managing home life as beat as possible. I try to but it is hard having a child with special needs who needs 24 hour care. When you are the main caregiver to your family and they depend on you, it is really hard to remember to do anything for yourself or even remember who you are. Especially if you are burdened with a disease such as this one, who wants to think of yourself when it only means pain? I hope that I haven't burdened or bored anyone with my novel. For anyone who is reading this, I hope nobody ever has to experience anything like this! This has truly taken a huge portion of the quality of my life because there are tons of things that I can not do with my family due to my medical issues. But the things I can do, is appreciate to the fullest extent that is possible.
I also wasn't aware the cramps were associated with fibro until I told my mom who works for a physiotherapist. The physio has been on numerous courses about fibro, and she immediately said it was the fibro and lack of magnesium and potassium and brought on due to the cold weather.
I am happy to report today is a much sunnier day and tomorrow should be warmer still. Yay!
After this bout with the cramp in my leg, I have decided that I am going to be a little more careful with my diet and take appropriate vitamins.
I am a very creative person and my art is my way of relaxing and keeping busy at the same time. I love to be busy. Occasionaly I take on too much by volunteering to help with my kids' school functions or make something for someone and then end up exhausted after, but I cannot help it, I have a natural tendency to get involved! LOL!
I refuse to allow fibro to take over my life and am determined to lead as normal a life as possible.
Hello and welcome,
You have got one story to tell. I don't have any children, but I realize that many people with FMS/CFS have extremely taxing and busy lives. I pushed myself through college full-time and then grad school while working full time and attending to a marriage. I suppose it's not the same, but similar. I too have scoliosis and sciatica and allergies and the painful shoulders. Geez...I feel like I am talking to myself when I hear your stories.
Have you been to a Rheumatologist and had your Rheumatoid Factor, Sed rate and ANA screening done? Just curious? These are tests I would encourage you to have at least once every two years, especially if you are exhibiting symptoms of arthralgia for so long. In fact, for anyone reading this, I would recommend this to all of you.
I am 46 yrs old and have live with fibro most of my life. When I was 10 or so, my mother took me to see a docotr because the pain was so unbearable. The doctor ran some testand out-of-options, simply stated it was experiencing "growing pains". I have dealt with that and pressed on. It wasn't until 15 years ago, it seemed to "flair- up" and started pressing the doctors on running tests. Wasn't until the Rhumetoligist ruled out MS, that I was told I had Fibromyalgia, roungly 10 years ago. The only releif I can suggest is stay active, the pain meds do nothing but mask over the discomfort. It you belong to a spa or the Y, go with water areobics. The movement gets the joints and tendons active and the warm water seems to ease the discomfort. Also, try deep breathing exercises and learn how to control your pain. Fibromyalgia is real and I honestly do not beleive any new medical drug will cure it.
Thank you for welcoming all of us and a big welcome to you too.
I do not have Fibro, only CFS so I do not get on here all the time as most of the questions/answers are geared towards Fibro. My sister and my mother both have Fibro though and I know what they go through. Sometimes, i wonder if I do have it or the beginning of it. Either way, the CFS is not so much fun and there is not much info or help out there for us. Trying to find a doctor is near impossible. I appreciate all the info that is on this forum, it has been helpful.
Hello and Welcome to the FMS/CFS forum! Well there is a lot going on in the world of CFS right now, so don't feel like you're alone. I've been doing a lot of reading about the XMRV neuroimmune virus and I am very curious to see what that will mean to all of us who suffer from FMS and CFS-CFS especially though. It is definitely one step in the right direction to sanctify and possible treat the illness. I like to follow Adrienne Dellwo blog on About.com too. You should check her out if you haven't already. Anyhow, it's nice to meet you.
I have complex regional pain syndrome and many other diseases including a fatal degenerative brain disease. I do have fibromyalgia symptoms although I haven't been diagnosed with fibromyalgia. Part of what I am trying to do with my life is to share information with others about what it is like to live with a chronic illness and treatments that have helped me (I use these treatments under my doctor's supervision and I believe that you should always consult a doctor before trying any new treatment. During my last doctor's visit, my doctor told me about some new research regarding fm and possible treatments. He has added some meds and increased some meds. I have found that my symptoms are getting better. If you would like to read any information I have received feel free to visit my blog at Iamdying.net. Once again, I am not affliated with any company and I am a person with chronic illness who is sharing information with other people who have chronic illnesses and I don't hope to gain anything by it other than hoping to make life a little more bearable for some people.
Hello and welcome to the Fibro/CFS Forum!
I am sorry to hear of your illness, but happy you have found our community here. I am sure that you will find some peace in knowing that you'll find a good group of people to talk with here when you need them.
You have surely caught my attention today with your first hand experiences with the medication Flurpirtine. I have had my radar out on it ever since I heard about it along with some other medications like LDN. I think the group here would love to hear your experiences with it. I sure do hope that it becomes FDA approved sooner than later. New medications for FM and CFS-ME take a long time to work their way through the system. It's very sad for those who suffer, and now with the recent discovery of the XMRV retrovirus, I hope new alternatives will become available to treat the infected people properly.
Anyhow, please feel free to post questions about Fibromyalgia, or begin topics that you know about and would like to share, or just feel free to chime in and answer questions. :) Thank you for choosing to join our community!
I talked to my doctor and we decided for now that I would take one dose of flupirtine each time I had fibromyalgia symptoms. A few days ago, I did have another flare up. I took the flupirtine and the fm symptoms went away within 20 minutes.
I remembered the headache I had before that is a known side effect of flupirtine so this time when I took it, I also took three Tylenol and I didn't have the head ache.
I am being very cautious about the Flupirtine and reporting my symptoms to my doctor. So far it seems like it is really helping my fm symptoms. I was having an increasing number of flare ups that were lasting for 24-48 hours. The only other thing I had taken that helped a little was some homeopathetic medication but it was only a temporary fix.
For me, it has been a good discovery so far. I have many illnesses on my plate and having one less to deal with is a blessing. My doctor wants me to start taking it regularly for its neuroprotective affect. He is also a neurologist and he thinks that Flupirtine according to research have a neuron protective affect against the "bodies" that cause neurons to die in my brain because of the degenerative brain disease. There have been trials outside the country in which researchers are using it for FTD, ALS, Parkinsonism, Alz. and other neurological disorders.
I haven't seen any results yet except that they believe that flupirtine does have a neuroprotective affect.
Since I do have a terminal disease I think my husband and I are more open to trying research meds. under my doctor's supervision than most people would be.
I just am letting people know what is available because my hubby and I do a lot of research and my neurologist/pain management doctor practices at a clinic in which the head is coordinating the Mayday project for chronic pain and they are active in coordinating clinical trials for chronic pain and fm disorders.
I hope to be able to see my doctor who specializes in FTD at Johns Hopkins again. We will moving closer to Johns Hopkins soon. I am also interested in seeing a well known research physician who was a keynote speaker at the FTD Natrional Convention.
We don't have alot of money but my husband has made a commitment to take me to the best places he can to find the best treatment and information for my illnesses.
So, when I hear of anything I will post it on my blog and here as well.
Hey im Billy, I was diagnosed with fms a few months ago now after 5yrs plus of going to far to many different doctors to count!!! I also had testicular cancer 2004 which is all gone now (fingers crossed!!) my main or most problematic symptoms are headache as well as neck, back and neck pains and more recently iv been having loads of problems with my memory and consentration. Im also always tired (if I could get away with it I would easily sleep 24/7) lol. I'm still trying to get everything under control and have noticed since the winter has kicked in iv been getting allot worse (I live in Scotland!!!)
At the moment im taking 200mg tramadol twice daily 1200mg gabapentin three times a day 60mg duloxatine a day. I also have 50mg tramadol melts that I take threw out the day as well a Maxalt for my headache. On top of this I also use paracetamol and diclofenic as needed mainly for my headache!
I think thats everything I take but to tell you the truth their is so much I'm past the point of knowing what I take!! It all works to a certain degree but I am still in loads of pain.
Just signed up with medhelp because im looking to get to know people that are going threw what I am so that I can learn how best to cope with this as I don't want to let it take over my life.
Sorry for the massive intro didn't really know what to say so thought id let you know where I am just now.
Mersilkee welcome back,
Thanks for the update. I looked at your blog and I think it's very interesting. I will be watching it and I hope you don't mind that I shared it with others that I know. I can't imagine what the struggle is like for you, but I sincerely appreciate you joining us here with your incredible story. It helps us more than you know. I am very interested in research and I think you are a great writer and a wonderful researcher. Please stay connected!
Cascarb welcome to MedHelp!
I have been through some of what you're going through, so I can relate. The pain and fatigue is a real drag and the medication options out there are hard to juggle. It takes awhile to find a decent combo. How long have you been using the Tramadol? Do you think it's effective? Some people swear by it, and this is just my opinion and I am no doctor of course, but it actually caused me horrible migraines. I can't tolerate Tramadol.
The Gabapentin was very effective for me with a combo of Diclofenac and an effective muscle relaxer. I didn't do well on Cymbalta though. Anyhow, there are a lot of other options out there we could discuss. Perhaps the forum members could help give you some ideas to share with your doctor at your next appointment? Take care and I look forward to getting to know you.
Hey iv been on the tramadol for about 6 months now, it's the best thing iv tried for the pain, iv also tried co-codamol and that just made things worse after a certain point but am wondering if it may work on a low does with the tramadol.
But yes I'd welcome any sugestions iv got an appointment with my specialist on the 16th to review my meds. Has anyone tried oxygen for headakes iv heard it can help my headakes are a mix between cluster headakes and migrains.
Hi everyone! I was diagnosed with CFS/FM in Feb 2009 after an ugly bout with mono. I was positive for EBV then, and basically negative for everything else. I also have a high platelet count. I haven't been able to work since June, and am praying that my first short-term disability check will come this month. I've been 3 months without pay, and we're about to go under.
My hubby doesn't get my illness, and doesn't understand why I can't work.I don't know if we'll make it or not. My friends and family are a great support tho.
It's great to find a place to "be". I look forward to spending time here.
Hello and welcome,
Glad you have found us here! I am sorry to hear that you've been under the weather and things have been hard on you the past few months. Feel free to participate in the discussions going on in the forum. We all look forward to getting to know you and hope that the new year brings better health for you.
I don't have a diagnosis of Fibromyalgia but I have fibromyaliga symptoms. I also have chronic regional pain syndrome and FTD which is a fatal degenerative brain disease. For my FM symptoms I take Baclofen and Flupirtine which I am taking under the supervision of my Neurologist. It is not approved in the U.S. yet except for clinical trials of fibromyalgia. It seems to be helping me. If you are interested in it maybe you should talk about it with your doctor.
I just wrote a post on Fibromyalgia about a couple of articles I read , it is at my blog Iamdying.net.
I am Michelle, 34 years old and have been suffering from Fibro, which has been increasing in severity, for about 3 years. I had to quit my job nearly two years ago. My Fibro also comes with all the associated "syndrome" issues from the Fibro, intense fatigue, PAIN, IBS, sleep issues,ect. I am also suffering from a protruding cervical disk and am due for my next cervical injection next week.
I wanted to introduce myself and try to connect to others who are going through the same sort of things. I feel pretty isolated with my illness and would be great to offer and receive support.
I kicked off of the savella about 2 weeks ago and the pain is coming back with a vengeance. I'm not sure how to handle my doctor, though, because you're not supposed to stop it abruptly. I can't stand "weaning" off of things as it just prolongs an unpleasant situation, in my case.
Even though the savella completely solved the pain, the psychotropic effects, I did not like. Savella, being an SNRI, has anti-depressant properties even though it's not FDA approved for depression treatment as of yet. I just made an executive decison to live with the pain and a clear head instead of being in a drug-induced, anti-depressant fog and pain-free.
I do take comofrt at least in knowing where the pain is coming from, anyway. That beats the great "mystery" there was before or thinking I had lupus. It feels good to be in control of something n this situation.
Welcome to the forum, and thanks for sharing your story with us. I am sure you will find your membership with MedHelp useful and extremely enlightening. There are so many ways to reach out to others. If you ever need anything feel free to post a question or get involved in a discussion. Or you can send me a private message. Again welcome to the community.
Thanks for the update. You know it's really not good for your body to abruptly stop an antidepressant. You will put your brain into withdrawals and cause yourself even more intense pain and anxiety and possibly even tremors and panic attacks. I understand why you want to be free of the med, I just think you might want to rethink how you stop the medication. It's ok to have that conversation with your doctor that you are not happy with the medication- especially if it's not working anymore and it's only been about six weeks or so.
There are other medication options out there that are not antidepressants. Any good doctor will be willing to explore other options with you. I would hate for you to walk away and say it's ok now that you know why you are in pain and not doing anything about it.
Savella is just one of many medications available to treat FM. Everyone reacts so differently to fibro meds and most people are on what's known as a fibro "cocktail" and everyone's "cocktail" is different. It usually takes about six months to find the right mix. To expect to nail it the first time and with the first pill would be the Fibromyalgics version of beginners luck my friend. Please don't give up. Try to work with your doctor, wean of the Savella with the help of your doctor and find something else. My doctor said "finding the right fibro medication is a lot like dating with the intent to get married one day." She's totally right.
I am new to this...i am in chronic pain...the doctor said i had Fybro and gave me Cymbalta and doxepin at night but the first few nights I had the worst migraines in a long time. My husband was up with me all night, he is so frustrated as I am, my 13 yr old daughter is upset because mommy is in bed so much...I was taking 10 tylenol 3 a day, but I want to have a liver, so realizing it only masked the pain for awhile while I whip around the house and do myself more damage, catching up on everything that waited...I couldn't move for weeks after. Just wondering, it that what people are taking who suffer with fybro? and have they had good success? Should I throw in there some therapy, chiro? Anything would be helpful....thanks so much,.
Hi, I would love to have some posts on what meds everyone is taking at present. I have diagnosed for about 6 years although I think I had it before that. I have been to all the clinics and taken so many meds that did not work. Cymbalta almost killed me. Right now I take Norco and Soma 3 times a day vit D3, vit c, Diovan ( I have slight high blood pressure with a small anurysm in my brain) Spiriva for COPD and Ambien 10 mg to sleep. The pain meds just barely help my general muscle pain but, I really don't want to get on any higher narcotics. I have finally accepted the Fibro as I fought having it for 5 years and that took lots of my energy. Any responses would be greatly appreciated as we can learn so much from each other. Hugs, T
I have had fibromyalgia for 1 1/2 yrs now, tried several medications, nothing helping. Had cervical disc removed in July and went into major pain and is still getting worse.
Getting weaker everyday, depression comes and goes as does the anxiety. Have some weird symptoms since surgery. want to compare meds - have heard toperamate may be as good as Lyrica. Am also on Cymbalta for a 3rd try. Don't think the Lyrica is helping but pain doc says better than Gabapentin. I have a grandchild due in April and my sons wedding in July. So depressing, was in the best shape I'd been in years at a job I loved and had to give up and nervous I won't be in very good shape for these happy occasions. Find visiting for 2 hours very taxing and can't get comfortable anywhere after.
Had 7 years pain free, caught it quite fast, did pool exercises, botox shots and gabapentin was back to work within the year. This time I'm lost. Pain burns and my body vibrates especially to anything with vibrations or loud noises.
If you read other threads on fibro or cymbalta you can get more info. I almost died because of cymbalta. it sneeks up slowly. Here is what happened after being on it for about 1 year. I gained 50 pounds, I developed IBS (which I just thought was part of the fibro) I became a zoombie, could hardly think anymore, and had horrible fibro fog so bad I could not even remember my kids names. I lost interest in most everything I liked .Finally I started thinking about suicide. The worst part was that no one could figure out what was wrong with me as it developed slowly over time. Now, let me tell you the worst part...weaning off was a living hell and took about 1 year because of this symptom called brain zaps. When I tried to lower the dose or stop I would get this clicking in my brain. It was so bad I had to take cymbalta just to move. I had to wean off very slowly, finally down to opening the caps and taking about 10 of the little beads in the end. After stopping I had the brain zaps for 3 months. I have many friends thru networking that have gone thru the same problem with this drug. My doctor who is chief of staff at a major hospital will not even prescribe this medication any more. Please everyone read up on this drug, it is so dangerous. I am so afraid after this experience that I won't take any of the new drugs for fibro for fear of something like this. I hear that Lyrica is good but everyone I know taking it has gained so much weight on it. I am happy to report that since I am off cymbalta I have lost 40 pounds, my mind is much clearer, I look foward to doing things when I don't hurt too much, and I am not thinking about dying anymore. Google the side effects and weaning off to find out more info. Hugs, T
I also took Gabapentin and it did not help. I tried the Mucinex thing, and went to fibro and fitigue clinic where I spent thousands on their test and treatments. I've done all kinds of physical therapy. Like, everyone else, I've read every book I could lay my hands on. I even went to a fibro symposium in 2007 in California put on by the National Fibro Organization that was packed with info. I've been on every kind of herbal combination imaginable. I've tried D-ribose, I mean ,you name, it I've tried it. The only thing that is ok is I get massages sometimes and that helps some.I have a electric blanket on my bed like the bottom sheet for pain. Anyone else with anything that they do that helps please tell us. Hugs, T
Hello. I guess I'm new to this too. I have had Fibro for 8 years, and am 27 years old. Yes, I know I'm "so young" to have this, and by the way, I can't get enough of hearing that!
I am working on my doctorate in child psychology, and will get that in August 2010! Finally. I am on Vicodin ES 325/750 for the pain at night when I dont shake my legs because of the Gabapentin. Also, I take Percocet for bad days- but that is not really working anymore. Just got put on Provigil for the fatigue and inability to work. That isn't really strong enough either. For full report, I just posted a comment (twice by accident) called Frustrated and Tired.
I can't take antidepressants because they have an opposite effect on my mood and I go crazy. I know I'm not depressed. I also exercise 4-6 times per week, pretty intensely. Exercise doesn't help me, it hurts me. Also, I am starting to get a sharp pain in my right forearm and shoulder, along with finger tip numbness, which is freaking me out!!!
So, that is me. Again, I have posted a full question/bio/frustrated rant on a different topic, but wanted to introduce myself!
I've been on this forum for some time, but I see that we have several new names on the forum. I see that some of the familiar names don't seem to be around so much any more lately. I'm near the finish of a low dose Cymbalta study. It's a double-blind study. I don't think it's working. I also learned that if you're taking Tramadol that you have to be really careful, because seratonin syndrome can be fatal. I don't feel any different on the Cymbalta. When I'm finished with the study, my neurologist is going to put me on beta blockers for the migraine disorder. I'm not sure why he isn't going to do Topamax, but he seems sure the beta blockers should be what we try next.
So, as you can see, I have the "fun" part with the migraines to go with the FMS.
I'm still trying to figure out what works and what doesn't, since FMS/CFS is so individual and the treatments have to be individualized.
Hello! My name is Sharon. I am 30 yrs old, and have been struggling with Fibromyalgia since I was 22. I have tried numerous medications, herbal supplements, "old fashioned" remedies, and not much has worked for me. Recently, (about 1.5 months ago) my Dr. prescribed Savella for me. I have been feeling a bit better then usual. I am really excited about this. I am usually a very positive, up beat person, but with the lack of energy, sleep, and the constant pain that I have been experiencing I have been feeling quite "down" lately. I really hope this medication helps bring me back up to my normal self again!!!
Nice to meet you. Welcome to the forum. I hope that you find many others that you can relate to and share your stories with. I too have been suffering since I was very young. It's a frustrating battle that is for sure.
Hi everyone! I just found out yesterday that I have fibro. Now that I know so many things in my past make sense. It has gotten bad over the last year while I have been going through testing and diagnosis for Lupus and/or Rheumatoid Arthritis. I thought a lot of this pain was from that but now know different. I complained to my rheumatologist yesterday about the hip/lower back/sciatica/chest/ribs pain, headaches and crawling/burning/itching/pins & needle scensations. He said he didn't care about those as they were part of rheumatism or fibromyalgia. He is only interested in getting to the bottom of my auto-immune issues. He at least said he was glad I had recently started depression med (Remeron) which will help my sleep and he claimed that most of fibromyalgia is from lack of REM sleep.
Now that I know about this I guess I will have to work through meds, etc. with my family doctor. I've been grinning and bearing it with ibuprofen and the odd Tylenol 3 as I thought it was the Lupus/RA. If I can find a way to live without the pain and fatigue I would really like that. I have been using baths, heat and massages which do help and am going to try exercise shortly but am very nervous about that.
In my 20's I had ulcerative colitis which resulted in emergency surgery to remove my large colon and then had a J-pouch built a year later. In my 30's my thyroid stopped working and I now my 40's are adding Lupus/RA and Fibro. Trying to stay upbeat and appreciate the things I can do but man does this get you down. I worry that I will have issues with being able to do my job and lose it before I can get on disability one day. I just can't keep up at times.
My name is Cathy and I have had fibro for approx 20 years which I have managed with diet and excercise - I previously posted about getting H1N1 vacc and the terrible reaction I had to it (going on 1 month now)
The fibro is horrible/neuro symptoms horrible. All tests have come back normal.
Could you possible look at my post and let me know what you have experienced?
Any feeback experiences are appreciated.
Thanks and so thankful for resources and support like this :)
Hi I'm 27 and as diagnosed with fibromyalgia in 2000. I was lucky because although I had had symptoms pretty quickly because my doctors PA happened to be an expert in it. I didn't get through everyone's posts because this is my first time here but I would like to share something with everyone. Be very careful when taking any of the tramadol, ultram, type drugs and anti depressants at the same time. I am not sure if it pertains to SNRI's but I know that sometimes when taken with the more common SSRI's it can occasionally cause seizures. This happened to me and sufficed to say it wasn't fun. and SSRI's are really common among them are paxil, prozac, and welbutrin. So speak with your doctor before taking them together because it was a really terrifying experience. Anyway I am basically here because I am having some drastic new symptoms and I am desperate to find out if anyone else is having them or anyone knows what it is. I posted it in ask an expert so I won't recount them here. But it is nice to meet all of you and its nice to know that we are all kinda in the same boat and luckily that boats still floating. Well thanks everybody and please be careful with your meds because the seizure gave me a lasting affect of having an abnormally high heart rate that has plagued me since I had the seizure three years ago.
Hi. its me again I was just reading some more of the posts and like one of you I am also training to be a child psychologist, minoring in psychopharmocology. Unfortunately I gotta genetically screwed because I got Fibro and Bi polar which means they can't give me anti depressants or I will go "hyper manic" which pretty much means I act like I'm taking a great deal of speed and its absolutely horrible. The docs convinced me to take a few cymbalta being one and it didnt help and it made me crazy. we tried topamax but it gave me a rare side affect and my face went numb. These days its flexeril, percocet, lyrica, and neurontin (gabapentin) I'm still convinced the neurontin does nothing but whatever it doesn't do anything negative so I take it. I thought the lyrica wasn't working until after I had been on it for about a year and I ran out and forgot to get it filled. yeah. it helps. Exercise does help but it has to be gentle weight bearing like walking or light aerobics or free weights and some of the best advice I ever got was never to do anything longer than 15 minutes. it especially applies to exercise but really it applies to everything. Sitting in the same position, cleaning, standing. It doesn't take much and after a short break you can resume your activity but the 15 minute thing has saved me alot of grief because I don't know about you but if I hurt myself or sprain something it seems to take a ridiculously long time to heal so the key is to never strain those muscles. OK apparently I'm a bit chatty. sorry about that but I hope some of what helped me can help you guys too.
I am a 29 yr old female. I have been experiencing several symptoms for the past 2 years. My symptoms have worsened over the past several months. My doctors have ruled out MS, Lupus, Vit deficiency, thyroid issues, diabetes. I do have a bulging disc and spinal stenosis. My orthosurgeon does not feel it is pressing on a nerve and causing my pain, tingling and numbness. He has suggested my neuro do nerve conduction tests to rule out carpal tunnel and then talk about the possibility of fibromyalgia.
I haven't got a chance to formally come on and welcome you to the forum. Thanks for joining the group. Many of the members have more than one ailment to contend with, so I think you'll find that you'll be able to relate to others and share experiences. Again welcome!
Hello and welcome,
Just my thought about bulging discs and spinal stenosis- both are enough to cause pain tingling and numbness. Many surgeons, if they feel you are not a candidate for surgery, they will tell you they don't feel your symptoms are bad enough to cause your pain and will pass you off to another doctor. I know because it's happened to me. I would strongly suggest going to a neurologist and getting the nerve conduction test done and an EMG as well. That way you'll have your proof that you have some nerve dysfunction. This is what I had to do.
Thanks for joining us here. I look forward to getting to know you!
I was diagnosed with fibromyalgia 3 years ago. The first doctor put me on Lyrica. He sent me for X-Rays and a MRI for my neck. I have been having neck and shoulder pain for 5 years and it has gotten worse. I cannot turn my head very far either way and somedays I can barley lift my right arm to feed the baby. The doctor told me the spcae between my dics on my neck are narrowing. My current dostor tried me on Celexa. I couldn't handle that. I wanted to sleep all day and with doing childcare, that wasn't working. Now I am back on the Lyrica. I have been experiencing sharp and burning pain in my mid back that goes around to my chest. This has happened about 4 times now. The pain tends to go away after 4 -5 hours. But this time, the pain started about 7 last night and I still have it. It is so bad that I do not want to move. If I sit up and not move, it doesn't hurt as bad. If I lie down the pain is also in my chest and really hurts. Does anyone else have this pain. Glad I found this site. Maybe I can get some answers. Thanks for listening
I went to my doctors and i was told i have this fibromyalgia, to which ive never been tested, and ive just been left,?? is there a test that can be done to see if i do have it, cos now its on my files,,, everyone i see put it down to this ?? xx
Hello and welcome,
Fibromyalgia is a diagnosis of exclusion, so your doctors probably ruled (or should have ruled) other illnesses out before giving you the diagnosis. There isn't a specific blood test to diagnose it. You are required to have pain in at least 11 of 18 tender points in both your upper and lower quadrants of your body. If you follow this link you can learn more about it.
I was officially diagnosed with fibro a little over a year ago, but I have been dealing with this curse for about a decade. I won't go into symptoms, cuz we all know what they are! I will say that it's hard to get dr's to take us seriously. Even the dr who diagnosed me jerked me around. Luckily I have found a dr now who mainly relies on my research and when I go into an appt requesting to try something she's usually up for it. The only thing I'm currently taking as far as scripts go is tramadol. I take b, e, d, ginko, magnesium, and calcium, I stay on a strictly whole foods diet and stay away from red meat. I also do a lot of yoga and meditating, faith in a higher power helps too :)
There are so many ways to deal with this disease. Some are not accepted by the medical majority and that is down right frustrating. The most frustrating and disheartening thing is the way that a lot of us are criminalized when we seek pain meds because it has gotten so bad that we just need some relief to stay sane. I thought I had a drug problem for a while because I read that euphoria was a negative side affect, then I realized that I was just happy not to be in pain.
Either way, I think that people put to much emphasis on addiction, not that it isn't real! I have gone through withdrawls from vicoden and cymbalta and I know how much it *****. I do take my tramadol daily for both it's anti deppresent affect and it's pain relief. I take a low dose, regulated of course by my dr. I have known people who have become addicted to these and bought them on-line and that is a scary thought. all I can do is make sure that I take my meds according to script.
I have done a lot of studying into medical marijuana as well, not to disturb anyone on here!! But I think it's a viable treatment for people who suffer from this disorder! It's non addictive, has very little impact on over all health compared to a lot of these script meds and it's organic :) Sadly there is huge stigma attached to it and even in states where it's legal for medical use you have to worry about being convicted by the feds.
I'm rambling. sorry. I just have a lot of opinions/experience and feel like the universe gave me soap box for a reason.
Good luck to everyone on here, I feel like we all have a common bond no matter how we choose to live with or treat our disease and we have been blessed with this forum so we can lend each other endless support and advice.
Your experiencing the exact same kind of pain as I do. I've been on Lyrica since October and am now on my second month of trying Cymbalta with it. How are you emotionally, do you have any anxiety or depression with your pain. I feel for you, mine started a year & 1/2 ago, through I would be back on my feet by now. You need a good doctor for one that understands your pain. You do have to move or it will get worse. My pharmacist made an error on a medication (had 8 x the dosage) I didn't move for a month, now the pain is twice as bad. What were the results of your MRI?
First, welcome to all of the new members I haven't had a chance to say hello to yet. Thanks for being a part of the Fibromyalgia/CFS forum. :)
I want to do a little sharing tonight. I just finally got the results of an MRI of my cervical spine from almost 2 years ago. I can't stress how important it is to get copies of not only the films, but also the reports back from your doctor. Sometimes it seems as though doctors like to protect us from information because they think it will make us nervous or stress us out. I found out yesterday that not only do I have arthritis in my neck that will only get worse, I also have a bone spur and that is why I've been having trouble turning my head and probably why I have so much pain in my neck and arms. My Rheumatologist only informed me about some bulging discs when I first got the MRI done. So I would always ask for a copy of the report and/or have your doctor clarify points you don't understand. If all else fails there are many places (including MedHelp) where you can find out what things mean. The internet is a vast and wonderful place and so is our community here! ;)
update on my fibromyalgia symptoms and flupirtine. I am taking Flupirtine on a regular basis and it is still helping my fibromyalgia symptoms. I really don't have any side effects other than drowsiness.
Hi to everyone. I was diagnosed with FM about 5 years ago. Unlike many of you, I had just started looking for an answer to my pain symptoms, and my wonderful PCP, a nurse practitioner, immediately thought of FM and sent me to a rheumatologist who confirmed it. I have actually had symptoms of FM for much longer than 5 years, but it took awhile for me to decide they weren't normal symptoms of aging.
Like many of you, I have had quite a journey of discovery trying to find out what works and what doesn't. I still am trying to figure it out. I am on Cymbalta, and will stay on an anti-depressant the rest of my life. I do have clinical depression so I would be taking it whether I had FM or not. It has definitely helped, but it wasn't enough by itself. I am currently also on Tramadol, which I don't like too much because it makes me sleepy, and simple ibuprofen. I take Flexiril when I have to, Lunesta to sleep. I am also on extra vitamin D, and magnesium which seem to help quite a bit.
Hi; I never really introduced myself;;;; I am a 38 yr old female wife mother of two teenagers with fulltime job/ with chronic pain and fatique./sleep problems.(possibly Chrohn's/arthritis or fibro or Lupus). Although I am not diagnosed with fibromyalgia I am working towards diagnosis.. I have been to my primary doc complaining of chronic neck pain that now has spread to pretty much every joint/chest and even in veins/abdominal pain(also have weakness in limbs).. I have also been to a gastrologist for abdominal symptoms..Blood in stool,pain,mucus in stool, diaherrea/constipation alternating,distended abdomen... I had blood test and stool sample came back postitive for IGA (which they say is 80% accurate for Chrohn's) scheduled for colonoscopy in March(which i just found out is colon cancer awareness month) anyways on this bloodwork also showed high sed rate 35.5, and low mpv(platelet volume)I have vitiman d defiency,low calcium,low sodium.. I went to the prim doc just the other day,and go figure they never even checked my body to see where pain is or anything just wrote a script for recheck of vitamin d, ANA test and rheumotoid facter test..I had this done Sat 1/30.. Referred me to a rheumo and prescribed me Celebrax..I just started it this morning..I also went to see my sleep doc last week (sleep apnea/insominia)prescribed sleep med .. So hopefully these help in the meantime. So now I wait again to find out results of these tests and my apt with a rheumo... I can only wait and be in pain!!
Pretty much everyone has spurs and disc problems but for most people it doesn't become a problem, it's just a part of our bodies getting older. It becomes a problem with they start pinching nerves or causing such severe pain that you can't stand it. I was only operated on because the herniated disc caused swelling of my spinal cord and loss of feeling from the hips down, I could still walk so didn't realize it wasn't all fibromyalgia. However, they only do surgery when absolutely necessary, I can't say my pain is any better for having it done, just didn't end up in a wheel chair. If anything my fibromyalgia is worse for severe withdrawal of medications leading up to surgery.
Yes I totally agree with you. Most of my issues are in my lumbar spine where I actually have nerve damage from degenerative facet arthritis, DDD and scoliosis. My left foot is numb due to it. I will do anything to avoid surgery if I can stand it. I did have one surgery on my shoulder and it didn't really help much. This bone spur in my neck is pushing on some nerves and is causing me grief. Yikes! But that's why we all are here isn't it? To cope with our pain. :) I'll take medication and other options for now. Fibromyalgia is sure a rough one.
Not sure if I should be here yet or not, but from what I read, I am beginning to think so. I am sad to see that two of my buddies Trudie and LvFrogs are here but I know I am in great hands now with them and all of you. I am recovering from a nasty bout of shingles. No one can explain the how/why I got them to me.(PLEASE do not say stress!!) And now I have all the classic fibro symptoms I have read here. Some I realize I had before but was looking in the wrong direction ie. RA, or ignoring. Some are part of shingles so the lines can blur. I am looking to see if there is any relationship to shingles and Fibromyalgia. The chicken or the egg theory. From what I have read, having CFS/Fibro may put you at risk for shingles. Who knows. If so, please beware! I will tell you anything you want to know, I would not wish that on anyone.
Also, my 17 year old daughter has been complaining about similar symptoms to Fibro and is this possible in teenagers? I just made the possible connection a few hours ago and haven't even finished my "homework" so to speak. I have an appt with my neurologist for my headaches/PHN from shingles so we shall see.
Thanks, any input would be helpful. I hope you all feel well today.
I was diagnosed with Fibromyalgia over 10 years ago. I've struggled with my pain mostly alone. My first rheumatologist was useless. When I saw my second, he told me the first was not a real rheumatologist! I'm pretty sure he had it on his door. But I checked his credentials, he is not.
I've been having fertility issues of late. First Fibro, then IBS, then migraines, now endometriosis. I went to see my new rheumatologist in the hopes that if I got my Fibro under control I'd improve my chances of giving my daughter a sibling. The pain shots were some what helpful but for me acupuncture and chiropractice care have helped a lot.
I would like to see my insurance cover these alternative treatments fully and to also cover fertility treatments. To this end I support health care reform. Starting last year I began working in my community to build awareness of the problems in our health care system and gather support for reform. I live in the Chicago area. We are having a rally the day before the President and Congress have their health care summit next week. Please join us or spread the word to any you know in the Chicago area that may be interested. Thank you for listening. Wishing you health.
February 24th Pre-Summit Rally
On February 25th, President Obama and Congress will hold a Health Care Summit to determine what is in the final bill.
In the Meantime:
Aetna Plans to Drop 650,000 members
Blue Cross Plans to Raise Rates by 39%
2,500 People Will Go Bankrupt Each Day
Let’s Tell D.C. What We Expect From Reform
Call to Action!
When: Wednesday, February 24, 2010 6:00 – 7:00 PM
Where: Chicago Temple, 77 W. Washington St., Chicago, 60602
INDOORS on 1st floor
Join Us Next Wednesday!
HELP US WIN REFORM NOW
For more information, call 312.427.2114 x208 (John), x211 (Jamie, Illinois Main Street Alliance).
HCAN-Il is a project of Citizen Action/Illinois. Visit our website:
www.citizenaction-il.org ● www.healthcareforamericanow.org ● www.mainstreetalliance.org
FACEBOOK PAGE: Hcan Illinois
Good luck with your search for answers. As I mentioned in my message above I saw a rheumatologist for my Fibromyalgia diagnosis. You need to go back to a rheumatologist to get your diagnosis or your daughter's.
For me, looking back I see the fatigue started as a teenager. I think it's very possible for symptoms to begin in the teens. Fibromyalgia Network has a listing of doctors in your area that they can send to you:
I wish I could help out with your shingles questions. Hopefully others can.
My name is Amanda and I will be 26 on Thursday. I was diagnosed officially in June with Fibromyalgia after so many tests. I didnt want to hear the answer. I ignored my symptoms for at least the last few years to avoid the diagnosis. I wanted to believe it was just natural pain, everyone feels pain right? I reached the point that my body was shutting down and at times I slept for 18+ hours. I was sick all the time and almost lost once again another job. Now, its not that I am against knowing and learning about what plagues me, trust me, I have a reason.
My mother was diagnosed in 1995 and put on full time disability in 1998. She has been a test dummy for every doctor to try what they think might work. She has been on everything from methadone to synthesized morphine patches. She has become a severe addict and has missed huge parts of her life as a result of the narcotics affecting her memory.
So, I have taken the middle road. I was very specific with my doctor from the start, no narcotics. I currently only take muscle relaxers at night to help me get a more restful sleep. Otherwise I try to lightly exercise and take hot baths for the pain. I live in Wisconsin and this is definitely the worst winter of my life. The pain is getting worse and so I have decided it is time to see what is working for everyone else.
I'm JoAnn, 44 year old homeschooling mom of 6 kids ages 6 through 19. I've had pain and fatigue since my early 20s. Been tested for RA several times, as my dad and sis both have it. Dad went on disability at age 50 (RA started when he was mid-30s), and my sister is his caregiver (and her RA started at about 45 years old; she's currently 53). I have always been a healthy person, but have had several health issues in recent years, and now I have about 30 pounds I need to lose! Ugh. I had my right ankle reconstructed 4 years ago after breaking it twice in a year. I had brain surgery 10 months ago to remove a mass of bleeding arteries (a cavernoma). Thankfully, should be no serious after-effects from that. Because I'm "busy" with 6 kids, I have put my own health on the back burner, for the most part -- not a smart idea! I finally went to my HCP last fall and mentioned that the pain/fatigue are getting worse, and I went to see a rheumy. He said I have fibro, which makes sense. I have pain in all 18 of the pressure points (!), and no joint swelling, so not RA (yet?). I am already on Lexapro 10 mg (anxiety), and think I'll have to start something else soon for the pain.
BUT the bigger thing is my SON. My 19 year old son started with severe groin pain last July '09. We were on a road trip, and it was so bad we nearly had to go to the ER. He has seen several specialists, had every test you can imagine, and the pain has spread. He is currently severely impaired -- pain all over, weakness, fatigue -- and lives at home with us. He is a PT student -- was FT. Had to drop a class due to "brain fog." The rheumy says he has fibro, too. He is currently on Lexapro 20 mg, Savella (not sure dosage), and ambien for sleep. He has terrible gastro issues, insomnia (has ALWAYS had trouble sleeping!), and is miserable. He is feeling worse on the Savella, and we're going to the rheumy again today. Thankfully, they got him in fast (he called yesterday and got the appt.). I am hopeful we can get some answers. He's had pain/trouble since his early teens, we realize now. He's extremely smart, but has had to leave the university (is now at the local cc), and cannot hold a job due to the pain/fatigue.
My BIG questions are: how do we make sure we can keep him on our insurance, since he's not a FT student anymore? Should we look into getting him on disability/SSN? How do we plan for his longterm care, if he is unable to go to work or school?
I am not worried about myself. I am grateful to have good insurance, a hard-working husband, and I just take it day to day. I am trying to drop some weight, and to stay positive. I have strong faith, a great family, and I feel lucky to be alive.
Thanks for this community. I look forward to getting to know you all better. Peace!
I'm Moriah. I'm 20 years old, a college student in upstate NY with a couple of majors to choose from at the moment. I've been married to a US Marine for a year and a half.
I've known about fibromyalgia longer than I've had it. My mother has it as well, and I was introduced to it through her. When I was as young as 14 I started developing symptoms--lots of pain, and overwhelming fatigue. We didn't think it was fibro due to my age, so we spent years going to doctors, getting tests of all kinds, and spending far too much money on it. On my 18th birthday, I was referred to a psychologist for depression.
I went to therapy and started medication for that. The depression wasn't the only thing wrong with me--I know it'd been triggered by all the pressure, and the stress, and the hopelessness, all the asking myself, "What's wrong with me? Am I just crazy?" The pain and the fatigue had been joined by many other symptoms by that time--stomach problems, weakness, difficulty concentrating, difficulty sleeping, severe weight gain, and others. I noticed the pressure points on my own body, so I felt it was fibro and kept going to doctors, trying to find answers.
The answers came when I was 18, about to turn 19...just 2 years ago. My husband (fiance at the time) training to serve in Iraq just after the date we'd been planning to get married, and I was at the end of my rope. One day I went to a small lecture on fibromyalgia--I figured, why not? See what they have to say. The doctor giving the talk was a chiropractor. While he was up there talking, I kept thinking, "This makes sense. Oh, I know that. This makes a LOT of sense!" I talked to the good Dr. after the lecture and he suggested I come in for a consult. When I spoke to him, he definitely couldn't give me a diagnosis, but he told me that his off-the-record opinion was that I did have fibromyalgia, and he recommended me to a rheumatologist--the very rheumatologist who had diagnosed my mother, whom I hadn't been able to see due to my doctors hedging around, giving me lots of tests, trying to avoid sending me to a rheumatologist, because they'd all insisted fibro was impossible.
So I went to the rheumatologist. And after years of blood tests, sleep tests, psychotherapy, medications, money wasted and no answers...the rheumatologist took a grand total of half an hour to talk to me, and immediately said "Well, it's fibro." Years and years wasted...for half an hour to get a diagnosis. I was conflicted at that moment--angry for it taking so long, happy to have the answers...and devestated that I'd never be really cured.
I started looking into getting disability benefits. I hadn't been able to hold a job for more than a couple of months--ever. In my worst case, I had the job for a week. I needed help, especially since once I got married that summer, my parent's insurance on me would end, and I would have to get my own...which I couldn't afford. I went to their doctors and their therapists and I talked and, in one case, sat on a cold table for forty five minutes before a doctor who didn't speak a lick of English came in and looked at me, filled out a paper, made me bend over and promptly left without a word. I got denied, and I didn't bother to appeal. I knew they'd just laugh at how young I was--I'd seen it happen before.
I went to the chiropractor for a while--it really, really helped. And I continued the mental therapy, and the anti-depressant drugs they had me on. They helped.
Cut to exactly one year ago. My husband was returning from his tour in Iraq. My free insurance, through the military, was due to end. I had to stop going to the chiropractor who had helped me so much, and the therapist. We were moving away. I stopped my medication, and I stopped all treatment. I couldn't afford it, plain and simple.
It's been that one year since I stopped treatments. Things are worse than ever, and affecting my marriage (not just this, other things too...but we won't get into that). My husband doesn't really understand fibro--he has that Marine mindset of "Pain is weakness leaving the body." I've tried to explain, have my mom explain, have HIS stepmom explain (who also has it)...to no avail. I've tried to live without the treatment, but it is very hard. So I've come here to see if anyone else has been through something like this...to see if there's hope.
my name is Judy, I was told by my rheumatologist, a year and a half ago, that I have all the symptoms of fibromyalgia, including all the tender points. I was put on lyrica, and cymbalta, plus tramadol for the pains. I also have a slipped disc in my lower back, causing sciatica at times. Both of my knees are in pain from bursitis, and osteoarthritis,and my rt. knee has a complete ACL tear. I was just diagnosed with hypothyroidism last week,and was put on synthroid. I have been so fatigued for months now,blaming it on the fibro, but have read that the hypothyroid symptoms, mimic fibromyalgia. I'm hopeing the synthroid will give me back some of my energy. I feel my plate is full with medical issues, also having high blood pressure, and high cholesterol, and severe osteoporosis along with everything else. I would love to try the heated pool exercise programs, and also massage therapy, the only problem being $$$$. I'm not sure my Cobra insurance will pay for it. I took early retirement April 2009, because of all my medical problems, and the increasing difficulty to even get out of bed, and get ready for work I have also had those terrible charley horses that wake you up, but never thought it was caused by the fibro, my rheumatologist told me to drink quinine water before bed, and that should help It's nice to find a group where we can empathize with each other, and I'm glad to meet everyone :)
Hello everyone! I am new here but not new to Fibro. I am 34 and was diagnosed 10 years ago. It has been the longest 10 years of my life... thats for sure. Fibro runs in my family. I saw my mother suffer for years. I felt so sorry for her. There was nothing I could do for her...other than just leave her alone. I went to visit her and she was not doing good at all. She could not even move she hurt so bad. I cried and prayed to God that he take her pain away and give it to me. Well... you really should be careful what you ask for. 2 years later.. I did "get" it and she also got better. I guess there is something good that came of it. Mine came on during a divorce. I was diagnosed quickly..and also quickly put on all kinds of pills which didn't work. At one point about 4 years into it... I was taking the max dose of darvacet (sp) amatriptaline 50mg at bedtime, flexeral 3x a day.. and 800mg motrin 3-4x's a day. The meds did knock me out at night...but I could not get up the next morning for the life of me. I did that for about a year.. till the doeses just got out of hand and my liver hurt!!! Today I just cope with the pain.
Sorry, did not know I was supposed to introduce myself first...I have Fibro, arthritis in various places, PTSD, and other problems. For several years the only report I got from the many doctors and their many, many tests were..."You need to get rid of some of the stress in your life" "Go see a psychiatrist" Blah, blah....Finally, several thousand dollars later, someone confirmed it was Fibromyalgia and began to treat my symptoms.
I could not sleep, because of the pain and anxiety, I mean days at a time, but after several experimental drugs and another year or so, I was getting some relief. I now can sleep well, and I am seeing a counselor for all the stress the doctors and theirs tests caused me.
I will never try an NEW wonder drug again, they just mess up the routine I have now, that seems to work. I have recently begun taking shots in my groin, Yes!! OUCH!! and shoulder, which give me a lot of relief for months at a time and help me to stop taking so many pain pills. It only disguises the pain, and I still have to remember to be very careful walking and bending and lifting. And as you who have Fibro know, it's not always easy to remember things...brain fog.
Welp, I guess that's about it. My husband is retired, I'm on disability after fighting for 3 years, we have an RV and travel a lot. I can lay on the bed when I get tired. I cannot ride in a car for long distances...like 5 miles to town and back is enough to cause me pain so that I have to lay down. I try to keep a good outlook and my wonderful husband take very good care of me. We are determined to live as normally as possible and to be happy in spite of everything. Oh one problem...he hates to see me cry...so I have to choke back tear sometimes at least until he is asleep. But other than that we are doing great!!!!!
God bless you all and have a wonderful Easter. Enjoy life, it's the only one we are going to have here...so make the best of it!!!
I was diagnosed with FMS around 2 and half years ago, I am 22 and as a child did have a few pains mainly in my head, neck and back, a bleeding from the bowels I was around 4 years old. As the years went on my mother took me everywhere to get help, but not much support was around then.
I do performing in theatre and sing, but at the age of 17-18 during a show I noticed excessive lower back pain and more symptoms came there after (I hav not performed in theatre for a 2 years now, as the pain is constant more or less.
It is at its worse and seems to be getting even worse with constant pain in my neck, shoulders, head, ankles, knees, back, throat issues, irritable bowel, stomach cramps (especially during periods, im literally throw-up due to the pain) There is more, but I' ll keep this short.
Im so glad I came across this website and this particular forum, I can see there are good questions, answers and support from everyone!
My name is Janet and I'm 43 years old. I've been sick for 5 years and was diagnosed with CFS and FM about 3 years ago. I also have nodules on my thyroid, sleep disorders, quite an impressive curvature of the spine from scoliosis, mild epilepsy, permanently elevated white blood cell count...and on and on. Many of these things were uncovered during testing to figure out what was wrong with me.
I no longer work due to my pain and fatigue. I take a lot of meds but feel my conditions are not very well controlled. I am VERY sad about being removed from life. I feel so guilty for not being able to be a good Mom to my 13 and 17 year old boys. They're tired of hearing that Mom is sick. It means nothing to them now.
I'm divorced but have a fiance that I've been with for about 4 years. We started dating right after I had a bone marrow biopsy and he's stuck by my side ever since. :)
I'm not depressed but sometimes I feel that there's just no quality of life and I feel there's no point in all of the meds, the acupuncture...it's all costly and yes, I get most of it back from my insurance company but the paperwork is overwhelming. ARGH. lol.
Re-reading my post I sound like a Debbie Downer but I'm really a happy person. Very caring and supportive of others. That's one of my problems actually...I put everyone else's needs before my own. Have lots of stress from having teenagers and there's no way to escape that. Putting myself first is easier said than done.
Thank you for having this forum. It's a great place to gather and be supportive of one another as well as information sharing.
I just returned from the doctor who told me at 24years old he thinks I may have fibromyalgia. I'm really unsure of what to expect but it seems like lots of you are dealing with this disease. Is anyone able to tell me what to expect or a little bit more about it without using big terms. I'm sorta terrified and just need answers. The doctor didn't give me a yes or a no but also didn't run any test so I'm a bit concerned/worried because I don't know what's going on or what questions I should be asking.I have also been diagnosed with depression, I have lots of trouble sleeping, and I constantly feel very stressed and overwhelmed at all time. Since I like to end things on a positive note I'd like to mention that I have an extremely loving and supportive family, an adorable dog, and friends that are always there for me.
Hello and welcome,
I would recommend asking the doctor to be referred to a Rheumatologist if your doctor thinks you have fibromyalgia if you haven't seen one already. They are the doctors who are currently most well equipped to treat the disease. Also, you should really ask the doctor to run the proper tests to rule out other possible causes for your pain. I see that you are very young, but you may be suffering from something else more serious. Just because you are young doesn't mean they should automatically assume that your body is healthy. I would ask for the proper diagnostic testing. According to MedHelp these are the criteria that your doctor should be looking for:
Signs and tests
Diagnosis of fibromyalgia requires a history of a least three months of widespread pain, and pain and tenderness in at least 11 of 18 tender-point sites. These tender-point sites include fibrous tissue or muscles of the:
Sometimes, laboratory and x-ray tests are done to help confirm the diagnosis. The tests will also rule out other conditions that may have similar symptoms. The following conditions have been associated with fibromyalgia or mimic its symptoms:
* Cervical and low-back degenerative disease
* Chronic fatigue syndrome
* HIV infection
* Irritable bowel syndrome
* Lyme disease
* Rheumatoid arthritis
o Sleep disorders
As a survivor of FM/CFS for at least 35 years, I have found my experiences can help others and I can learn from others. I have all of the first part of your reply above and 5 of the other conditions. I am very lucky to be as well as I am with what goes on with me. Hope to
Welcome to MedHelp Janbao!
Thank you for joining us here. I am sure your experiences will be very helpful here and I am sure you will learn a lot from the members here as well! I am excited to see you here. Let me know if you have any questions about your membership.
Hi, my name is Patty, I live in South Alabama and I'm a married woman of 20 years with 3 children ages 16-18-20! I'm trying to stay upbeat about my Fibromyalgia diagnosis and hope this community can help me with that! Ive had neurological symptoms, a TIA, migraines, seizures, and pain since one day in the summer of 2004. Ive seen family doctors, neurologists, and am currently under the care of a rheumatologist. I'm a Restaurant Manager but have not been working due to my condition since 5/2009.
I hope to meet super-awesome ladies, (and guys) that can relate to my issues, and my chronic pain. You may recognize me from PLM...(I need a nreak from that whack-hole), anyway, nice to meet you all and its great to be here!
I think you'll find a lot of awesome people and tools here in the Fibromyalgia/CFS forum of MedHelp! If you need any assistance getting started just let me know. I'd be happy to help.
My Name is CJ, I work full time as a Defense Criminal Investigator and I own a 24-7 Bail bond Company which is hard for me to operate 24 hrs a day now but I am still working both as I truly love my jobs even though somedays its hard for me to function properly. I am married and have two grown children and 3 Grandchildren ages 15,12,and 7.
I have had FM since 2005 but was not offically diagnosed until 2007 and then in 2009 was diagnosed with MS. Since 1990 I have had thryoid issues, I have Graves.
I can not tolerate medications very well, as the side effects seem to cause more problems then the actual symptoms I have, especially pain medication so I chose not to take any, but I do take natural supplements.
The hardest thing right now for me is Fibro Fog (and walking) and severe pain in my legs, as it trys to over take my life,. I have learned to use humor help and to also educate those who do not understand what FM is and what it does to a person. I may have FM and MS but it DOES not have me.. My thyroid disease has caused many underlying other conditions as I was Hyper, now I am Hypo.
I am happy to be a newbie to this forum
Welcome to MedHelp,
I am glad you both could join us here. This place is really great for learning and sharing. There are over 10 million visitors to the whole site and counting! There is a library as well as a place to track your pain, weight and even you period ladies. Ok, well for a few of you that doesn't apply, but for me who is still dealing with that time of the month it's great! Darn it!
Also, there are tons of different forums, so if you have a specific question, there are places to ask those if we can't answer them here (like the Thyroid, Adrenal, Arthritis forums respectively, etc). Additionally there are doctor forums. Let me know if you need help getting started. Again I am so glad you are here!
Hi, everyone, I joined this forum last week but am just now getting time to introduce myself. I developed fibromyalgia and was diagnosed in 2004, at the age of 62. Before that, I had had several neurological and spinal issues, including shingles, sciatica, carpal tunnel, a laminectomy for a herniated disc, plus a hysterectomy in my 50s for endomitriosis. My first 6 months of fms were horrible, and I was so sick and tired that i had to retire from the career I had enjoyed for so long as a college professor of English and Development of Western Civilization. Since being diagnosed, my health had gone up and down. I've been on several medications that have worked for a while and then stopped. Right now, I am doing pretty well. I saw a hypnotherapist several times this year, and he helped me to develop a new approach to health and wellness. I now meditate and do yoga regularly, and both of those hep a lot. I walk a lot when the weather permits. I am very careful about nutrition. I also have learned that the very worst thing for me is stress, so I avoid it as much as possible and try to maintain balance between activity and rest and relaxation.
I have a 17 year old cat named Dave who is a sweet, cuddley companion. I live in the beautiful little state of Rhode Island, an hour away from Boston, where my son Bob, my daughter-in-law Naama, and my adorable grandson Amishai (Ami for short) live. Ami just had his 5th birthday this week.
I look forward to getting to know you and to exchanging information and tips for living with fibromyalgia on this forum.
At the age of 12 I had my first actual symptom that I can recall, dizziness and instant fatigue that led to me passing out. A little here and there over the next few years I had other symptoms, pain, bladder issues, weakness, lack of muscle control etc. It wasn't until I was 20 and injured myself while disassembling a model diesel engine that my body seemed to finally say I'd stressed it enough. At the time I was 5'7 and weighed around 240. I'd tried diets, I'd been on vitamins I exercised all the time. I couldn't get to my target weight before, but I never realized how much harder it would be to get there after that injury.
The program I was in at that time of that injury decided to kick me out because I no longer had the physical capabilities, they claimed it was in my head. The next two years I went through different jobs, kept trying. I fought past my pain as much as I could, ignoring the signs because I was determined I wasn't going to let myself be weak. I wasn't going to lose my independence.
In 2002 I lost that fight. I was a nursing assistant at the time and in the midst of transferring a patient from her wheelchair to her bed, I felt my body giving out. I barely got her into her bed before I lost control and ended up on the floor in pain. I lived with a woman at the time that had Fibromyalgia and ended up asking the doctor she took me to if there was a chance that's what I had. The doctor said no but we'd find out what was wrong.
She did tests and then sent me to a neurologist that did tests. The neurological tests were enough I guess because a couple months later, I had a diagnosis. He was the one that said, it was Fibromyalgia.
I've been unable to work for long periods since. I can get through 3 months or so of having even a part time job before the flare ends up worse then normal. Without being able to work, I have had to go without many things over the years. I've had to give up my independence while fighting for aid from the government. It really gets disheartening when people decide to start acting like this is all in my head, because I have tried to get jobs, I have tried to be the way I used to be, I pushed myself... I've pushed hard enough that though I'm not in a wheelchair as I was the first two years I still have limits and keep trying to push past them.
So, here I am on this site, knowing I'm not the only one that feels as though life is simply pain and longs for the times when remission hits. Knowing others have been told for some time, "We can't find anything wrong," or "It's all in your head." Really ***** living with the "Invisible Illness."
Depression has at times hit me hard when dealing with it, I'm moving to Maine soon, hoping there I'll have a chance to get on track while still fighting for aid. I want my independence back and I won't give up until I have it.
Big sufferer of Chronic Fatigue. I dont consider myself having CFS or Fibro. Because i have lyme disease, so i know what is causing the fibro and CF. Unlike CFS and Fibro, they do not know what causes it.
I want to make you all aware that Lyme is something to consider. i was treated and doing much better.
If you have any questions, message me.
My story began 7 years ago, so i know what you all are going through.
Start educating yourselves and start reading about lyme. I think some of you would learn some great things that woudl shed some hope
I am 27 and new to this site. I was diagnosed with FM in July of '09 after a traumatic childbirth. I have been in chronic, debilitating pain for 2+ years now. Some days are better than others, but I struggle to get the minimum done. That's the tip of the ice burg for now...my hands hurt a little too much to type anymore.
Hello. I'm 28 years old and have pretty much been diagnosed with fibromyalgia. This week I have an EMG and next week I have an MRI on my brain. The neurologist said if those come back normal, we're calling it fibro. I've read several of the posts that refer to flare-ups and I'm curious. I haven't had anything that I'd call a flare-up. All of my symptoms are constant and/or random. I remember being so tired at least since high school and maybe middle school. My back pain (muscle spasms and low-back) started in high school as well...at least 1998.
So 12 years of fatigue and pain and it's just really gotten progressively worse in the last 7 years, adding on new symptoms along the way. 10 years ago I began suffering with restless leg syndrome. 9 years ago I began having frequent headaches. I also felt like I was going stupid...and after reading some about fibromyalgia, 'fibrofog' describes it to a T. 6 years ago I was diagnosed with Hashimoto's. I'm always more sore with bad/cold/wet weather. Stiff and painful joints and muscle cramps that strike with the slightest provocation. I've had sleep studies done and they've said idiopathic hypersomnia. Depression of varying severity over the last 15 years. Once I got pregnant the first time, I had constant problems with my reproductive organs which led to a partial hysterectomy - and somehow I still cramp regularly. Urinary troubles since I was a child. Random nausea, but I had a migraine 2 weeks ago that left me nauseated and sick. I was nauseated for 8 days following and lost 12 lbs.
I'm so....relieved and yet so frustrated at the same time. It's taken SO long and so many doctors to get to this point and I'm so thankful for the doctors that I've found recently (last 2 months). I switched MD's and the new doctor mentioned fibromyalgia during the first visit. He sent me to a chiropractor that day and he ALSO mentioned fibromyalgia. I just saw a neurologist last week and he, too, said fibromyalgia.
The variety of therapies I've tried since February, are:
8 weeks of physical therapy - no relief
8 weeks of chiropractor - no relief
gabapentin and meloxicam - no relief
lortab 5, 7.5, and 10 - no relief
savella - made me sick
lyrica - just started! no horrible side effects yet
EMG & brain MRI in the next 2 weeks
I'm so....worn out. I've gotten used to being disappointed in tests and medications. I don't expect anything to ever help and that's depressing in itself. I'm relieved to have a likely diagnosis, but not so excited about no magic cure.
My name is Sabrina and I run the local FM support group in the Louisville, KY area. I've had FM since puberty but was only diagnosed in 2007. I just joined the Medhelp site and am very impressed with it's functions and ability to help people track their medical history...this is going to a LOT of fun to use and I'm excited to get to know other members of the site.
I'm happy to share my FM experiences with anyone and what I know so far and will be sure to post anything new that comes my way as well. I'm always looking for ways to improve my own functionality with FM and finding ways to cure the root causes of many of the symptoms (i.e. IBS, etc) and you can be sure I'm going to have plenty of questions!!
There is a lot to read and catch up on in this site, so off I go!! Glad to be here!! :D
Hi. I've posted a couple questions here, but don't think I've done a real intro. I am a 29 year old female, experiecing symptoms for the last couple years. It started with this brain fogginess thing about 3 years ago that I tried to write off, but kept getting worse. I also experienced lots of headaches, random muscle pain, tingling, numbness, more muscle pain, and gastro problems. In addition, I have sinus/allergy problems and a recurrent sore throat. I was dx with a cervical spine buldge which my neuro thought was casuing the tingling. Two surgeons said it was not and there had to be another cause. I was also recently dx with gastroparesis. I also was deficient in Vitamin d and b12
My neuro finally put me on an anti-depressant (Pristiq)or I should say, finally convinced me to take it. My family Dr thought I was overly stressed and possibly depressed. I didn't think that was causing all of my symptoms, but finally agreed to try it. I do feel somewhat better as far as mental focus and the brain foggy thing. I think the B12 and D vitamins are also helping with that.
Today, my neuro said she thought I had Fibromyalgia because my muscle pains seem to fit in with that and so do my other symptoms. So, I do not have an official dx, but she wants me to discuss it with my family doctor when I follow up in a couple months.
Hi...my name is Erin I'm 43 and I was diagnosed with FM about 1 month ago. I had been in pain for a really long time but just thought it was from working out and my job. I got injured at work about 3 years ago I sprained my lower back and it became a recurring injury over and over again. So my GP sent me to a physiatrist to see if he could help...I had done PT like 3x with no relief from the pain, anyway I guess I should have told the Dr. about all the pain I was experiencing instaed of just my back. I was all I was worried about because I needed my back for my job. So finally after getiing steroid injections 3x and lots of other different meds he asked me the question...Do you have pain anywhere else I of course said yes and yada yada yada and tests and I have Fibromyalgia. I also though cannot get rid of the back pain.
I am on cymbalta this is my first week on the drug because I was on topamax for the back pain and the pharmasist said I needed to slowly ween myself off before I started the cymbalta. As of yet I feel no relief except from the pain meds but who wants to be on those all the time. I also don't really sleep, so they gave me Ambien and of course on me it did not work. I tried it 4x and nothing. So I have a follow up appt with the doc on the 14th and hopefully the cymbalta helps by then.
Hi, I'm Bill and i think I have FM and/or Costrocondritis. Late last winter i had a bad coughing jag that resulted in a really hard cough that i swear felt like i hurt something in my rib/sternum area. That left some sternum/rib pain. A little while after that i had a massage that really left me sore the next day and what felt like weeks later. Didnt know what was going on, had all the other tests, stress test, endoscopy, blood tests, gall bladder. All normal. GP gave me PT prescrip, that seemed to help plus i really took it easy exersize wise, kept the arm motion down. Got plenty of sleep, and eventually felt good again, for a couple months. But of course recently i signed up to coach my sons baseball team, and have been pitching to the team (coach pitch), all was okay until 2 weeks ago on a really hot Sunday, i felt really sore and exausted after a practice. Now i felt those pains come back to my rib/back/neck area. It really feels like the areas where you'd feel movement as you throw. Sometimes the pains shoot around to my elbows, knees too. Plan on making apt with Rhuematologist this week. Taking ibprophen and vitamins (D3, MSM Joint, some others that are supposed to be good for FM). It just stinks because in the past when i was 'sore' it seemed to only last a few days, now it seems like i have to deal with it for weeks. Arrg!
I am writing in about my boyfriend, who has suffered with extreme fatigue for years, on and off and he has recently had his worst and longest bout of it which has been going on for two years now. He has been diagnosed with Chronic Fatigue. He has not been able to work because of it.
He does get alot of neck and back pain, but his symptoms are mainly: EXTREME fatigue, and spaced out feeling/brain fog.
No one has been able to help him, it seems like because there is no known cure, Doctor's don't know what to do. He has had numerous full blood tests, which show nothing. Although, many years ago he had Glandular Fever twice, which we have heard can be the cause of CFS. His Doctor has prescribed many tablets (which are all to treat depression) Efexor being one of them, and they made him feel horrible, and he didn't want to get addicted to them, so now doesn't take anything. We have even tried a naturopath, and natural medication. He has been active/to the gym on and off, but sometimes too much too soon makes him fall in a heap again, at the moment, he can't do any exercise.
He is not depressed at all, although it does get him down at times, that he can't work and do alot of things with me. But I think I handle it quite well, we have a good life and a wonderful, loving relationship. I told him I am not going anywhere, I love him and not to worry about me, he makes me so happy. I wish he would get better, but I am willing to stick by him, be there for him and look after him. He is my everything.
Does anyone have any suggestions, is this a life long thing he will have to deal with?
Hi I am pb and I have had the diagnoses of "myalgia" for a long time but just started lyriuca again, and seem to have lots of the same symptoms as listed in the FMS tracker, so...I guess I have fibro-myalgia???
I don't even know if that is what "myalgias" means but, hey, I am here now anyway and am looking forward to meeting anyone who goes through their days like I do. SO I am guessing a lot of you are here. :)
I like a good sense of humor, and can sometimes be intense and sound "preachy" even when I don't mean to. SO if I ever get too far off track, or accidentily step on your toes, please let me know in a friendly way, and I will do my best to address it. :D
Hope everyone smiles at least once today!!!!
Hello, i have had little support from the NHS last 5 years i have been ill. ME/CFS is my diagnosis. What brought me here is the concern that my ME may be getting worse, or I may have MS, or TN, or because unfortunately on the internet you find all sorts of stuff, a brain tumour? Anyways, I am not unicorn princess with ME, i am simply unicorn princess :) my body just lets me down every now n then ;) laughter is the best medicine, and I hope I can offer support as well as recieve it on this website :)
I am 36 and I have fibromylagia and bipolar 2 disorder. It is hard to keep track of what causes what. Especially in the crappy sleep department. I was diagnosed over 8 years now. Hard to believe it was that long ago.
All things considered I do pretty well. I get this gnawing pain inbetween my shoulder blades that on nights like tonight makes me want to cry. I can take tylenol and it helps some. I can't take anything codeine based because of my other meds. Found this one out the hard way. I was in pain and took a tylenol 1 (8mg of codeine). It made me completely high but didn't take away the pain. lol.
As for the part about who I really am. I am a wife and proud parent of a little dog. lol. He keeps me entertained and has always made sure I go outside. Very good therapy. I am very lucky that my husband is a rock and continually tells me that he loves me. I love to paint (not very good at it but love it) I love to do pretty much any arts and crafts.
My name is Courtney. I am in such a downward spiral with the fibro. Right now I'm taking Savella which I think is making me have terrible thoughts and very bad mood swings. I have literally been crying for a month. Some days I feel like I can't breath, or stand. Turning 46 in early July, I treated myself and boyfriend to a week in Aruba. I never got out of bed. I never stopped crying. It was truly awful. It didn't occur to me that it could be Savella. I also have hepatitis C and cryoglubulinemia. In addition, I have a titanium plate in my neck and another surgery that has not helped my neck & back pain. I am at my wits ends. Doctors treat me like a crazy lady who needs mental help. I feel angry that my body does not do what I want it to. Even when my boyfriend touches me lovingly, it burns. I'm depressed about how I'm ruining his life and my career. I have a fairly high profile job that some days I just cannot face. I've used all my sick days already. In July.
Thank you for your comments. I'm going to get off the savella. It helps the extremities but I think it's making me crazy. The only relief I get is from narcotics and nobody's handing those out. I'm taking a sleeping pill which doesn't seem to be working well so I'm exhausted all day. The doctor solution was Provigil. $70 with insurance. All I got was palpitations and the inability to catch my breath. Also, I lose my balance getting up from lightheadedness. I just want to live my life. I don't even understand fibro and I was diagnosed 8 years ago. I feel like the doctors think it's a joke.
I honestly thank you for verifying what hell I've been dealing with. My poor bf doesn't deserve to be burdened with this. I just want a break.
Sorry about being long winded. I wanted to be a part of the forum. I just don't want to be alone anymore. Nobody, nobody gets this. At work, I am now just the lady who has trouble standing and cries a lot. I am embarrassed and angry and very tired with total insomnia. Thanks for letting me join. I will continue to read your solutions. I really need some.
I won't go on about my pain etc as you all know the feeling. All I can say is that I want my old life back. I was a riding instructress for over 25 years, now well I just dream. I still have contact with the horsey world but it is not the same. I had to sell my beautiful Arab gelding, luckily to a friend and I still get to see him. I want to be a novelist, dramatic life change and I am in the final edit of my first novel. Life has it's ups and downs and we play the cards dealt to us, right.......
Hello, my name is Rebecca, and I was diagnosed with fibromayagia about 4 years ago. It of course has not been a fun experience. On top of the I have Extream crontic back pain. But I am alive so what more can you ask for. Quality of life seems to be hindered a bit. I try not to let any of it get me down. However every so often I can't help but let it take over. It has a mind of its own you know. Other all of that crap. I am work 2 jobs right now and working on starting my own business. So that way I don't have to work 2 jobs. But for now I have to do what I have to do. I was diagnosed with fibromaygia when I was a dealer at a casino, in which I loved this job. But it was way to painful so I had to quite, now I have to work 2 jobs just to make the money I was getting at one job. Just doesn't seem fair. But thats life.
Thought I'd better get around to introducing myself since I've been commenting on a few questions. My name is Carol and I'm 63 years old. I was diagnosed with CFS/Fibromyalgia back when I was a 45 year old. I believe this all began way back the month I turned 30. I had my first seizure way back then. Dilantin helped to control the seizures until after my hysterectomy and gall bladder surgery at 45. I contracted some terrible virus that put me in bed for months. The seizures began once more and a very kind ER physician on the night shift diagnosed Fibromyalgia with the familiar trigger point test. I was soon in the hospital with a nervous breakdown and diagnosed with severe bi-polar or manic depression as it is commonly known. The lack of sleep that we all endure sure didn't help. So I take a slew of medicines to try to control all of this.
And have for 18 years. The jury is out on whether I also have Undifferentiated Connective Tissue Disease or UCTD for short. So I take Plaquenil to control this. This is a form of Lupus. The statistics show that 45% of Lupus patients also have Fibromyalgia.
So that is a brief synopsis of my life. Luckily I have a terrific long suffering husband, four wonderful grown children and four fabulous grandchildren who love and support me.
Having Fibro since childhood and not knowing what was wrong was tough. I have always looked like a marathon runner and am intelligent and enthusiastic, but my body and brain hasn't kept up at all with the image (not even close : ). I am 51 and found out 5 years ago, first from my massage therapist, and then Rheumy's that I had Fibro. I was able to manage my monsters (also have depression) and be very productive, until last fall. The pain and fatigue sky-rocketed and in March, I I hit the wall and became pretty much house bound since then. It's tough I live alone. I was also diagnosed with CFS and Raynaud's (couldn't get warm) and stayed in bed most of the winter, under the covers as my nose was so cold it hurt. Weird I know, I though so too : ) My symptoms have caused me to wonder how the hell I'm going to take care of myself. The pain gets so great that I think of suicide often - as unfortunately, the pain meds can't give me that enough times during the week.
I have such a problem with my arms with pain and weakness, a tad less with the rest of my body, that I can't work. I can barely manage household chores and take care of myself. It is very frustrating. I've been to tons of doctors and that really bothers me. In 4 weeks I had 15 appts. I usually eat very well, been exercising for 2 months and rest. Nothings changed and I have finally applied for disability. I need help and have found Drs reluctant. It seems like this Fibro/CFS is some entity that no one knows how to handle. The Rheumy's say EXERCISE and what does your shrink say and visa versa... I'm on all sorts of medication that make me loopy and I can't take them if I want to drive.
I can't help but to think that if more men were stricken with this "syndrome" it would be taken seriously. I am an intelligent, fair-minded woman who doesn't ask for help unless needed.
Wow, after a few years of reading I finally wrote : )
Hello my name is Karen I was very recently diagnosed with Fribromyalgia. I came here today due to a web search about leg cramps and FMS, because I get terrible leg cramps, mostly when I try and relaxe, It is sometimes more of a spasm than a cramp. It is really nice to know that I really am not alone, and all of this is not in my head. Now I am wondering if CFS goes along with FMS. It seems that some days I am so exahaseted I can not even function. As I said I am newly diagnosed, and feel like I am in the dark, and my flashlight just went out. My Boyfriend seems to not want to talk about it, and I haven't told my son, he has lived so long with Mom being tired and hurting that it is just a part of life for him. ( he is 14) Ok so I am beginning to rattle now, so I guess I am done for now.
Drs seem to differ on if FMS and CFS are separate or not. I have found that while it is hard for family to understand what is going on with me - it is even harder for me to understand what is going on with me : )
Hello I am Casey and new to the forum. I have ben told fibro might be the reason I am having pain and shortness of breath/fatigue by my PCP but he didn't suggest anything like treatment or whatever. I am really not sure what to do.
I feel the same so often that it really helps just to know others feel like we do. As for pcd not saying what to do, many don't know what to tell their patients. Lots of us have gotten help from a rhumatologist which might be a good place to start.
I haven't been to this forum in a very long time, but since I have become sicker with Fibro I wanted to add a comment.
I also have Dercum's Disease which is inter-realted and in my opionion can *mimic* Fibromyalgia. It is supposedly a *rare* disease, but the more research I do on it, the more I find people having it, along with Fibro and other nerve-related issues. The pain of Fibro is beyond unbearable (at least for me) but coupled with dercum's disease is indescribable horrific pain night and day and never lets up.....ever. I am including this website for information purposes because I believe more people have this than not.
Do you know that when you get leg cramps (I get them every night and they are DE-BILITATING!!) if you eat some mustard, it will eliminate the cramping. I am NOT kidding....it works, so try it. I keep a few of those little packets of mustard by my bed. I happen to like mustard, so that helps.
Also: I am going to see naturopath and I'm going to try acupuncture next month. I have done quite a bit of research on Fibro and acupuncture with positive results. Since I refuse to take drugs of any kind I am going the natural route. I have been experiencing debilitating pain for decades, but never knew what was wrong and the doctors I did see didn't know either. I have been to ALL kinds of doctors and I have to say NONE ever treated me without writing a script for some drug. In my opinion, that is just bandaiding the issue instead of getting to the core of the problem, which most mainstream doctors simply tend to do, unfortunately. I feel so bad for anyone that has pain of any kind, and everyone's pain is unique. I too have thought of ending my life, in fact almost every day for many, many years because the pain DOES become *Unbearable* as you all know. This is such a debilitating disease that steals the life from you....literally. I know I have trouble getting dressed, I drop everything I try to pick up, I walk like I have something stuck up my butt....mechanical-like, I guess, and I am irritable and angry AND frustrated because I'm not able to DO the things I want to do or use to do or even CAN do. I too live alone, and I'm 62 with no friends and pretty much no family.....at least no one I could really count on for any help, so this scares the HELL outa me because I'm too old to be young, and too young to be old, and I don't want to die and decompose here in my little condo with my kitty with no one finding my body, and my cat who has eaten parts of me.... for weeks (this happened to the guy that lived across from me 2 years ago and it is my biggest fear.) I'm pretty sure ya'll can relate to everything I'm saying. I lost most of my friends because they said I was a downer, negative, and that I wore on them....not upbeat.Tell me HOW you can be upbeat when you are in this kind of pain? Positive? I truly try but I guess I'm not that positive. And being a downer....well that to me would be PAIN and PAIN wears on you, so I guess I wore on everyone with my pain.
I sometimes PRAY to GOD to please just take me because I can't endure this anymore.
I do have OK days and I am able to get out in the yard and putter around. I also use a cane when I need to. So, I really am trying to live, but it is tough. I just want to know how everyone else deals with their pain. I am against most drugs and a neurologist I saw a year or more agao, and never went back to prescribed many *drugs* and I did try them but the side affects were more than I could handle. So, this is why I am going the natural route and try acupuncture. I guess time will tell IF I can strand to take the time.
Hi I was just diagnosed with fibromyalgia , but I know I had it for while. I'm just ignoring it, hoping that it will go away and it's just normal part of being overweight. But then I have lost weight , and gain weight, when I was thin I also had the "pain all over my body" so I know it's not because I'm overweight.
I learning to live with the pain, I have good days and bad days. I take tramadol 2-3 tabs a day , doesn't take away all the pain but it helps with energy. I know there will be side effects of some sort , but I can't live with the pain, I have to function and live my life.I'm glad that I found this site, knowing that I'm not alone with this condition.
Hello, I am brand new to this forum. I am 49 years old and was diagnosed with fibromyalgia about 2 1/2 yrs ago. However, I know my health problems started when I was 40. That is over 7 years to get a diagnosis. I was on zoloft for several years for mild depression (one of my initial syptoms) and about 1 1/2 ago my doctor switched me to Cymbalta. I have major problems with fatigue and muscle pain and weakness. Even though I was diagnosed and getting treatment, I feel worse than ever. I still work full time but struggle to make it through the day. On my free time, I barely function sometimes. I get so frustrated because I want to spend time with my family. I can no longer do the things I enjoyed such as gardening and playing guitar. I recently was put on a med to keep me awake during the day. My fatigue was so severe I couldn't work, drive or do much without starting to nod off. I was amazed at how much more alert I was. I didn't realize the fog I've been existing in. I am fearful of staying on the med long term though. I have side effects from both meds that are making me wonder if it is worth it. Anyway my husband is very supportive as are my children. I am sure there are many at work and in my personal life who just can't understand. I hope this forum helps me.
I'm new to this forum & new to fibro. I've had it only about 4-5 months. Unlike a lot of you, I don't have a lot of other health conditions other than episodes of major depression since I was a teen as well as IBS since about the same time (I'm 50). I've managed to mostly eliminate the IBS with diet & stress management. The depression was managed for years with zoloft until it stopped working about 5 years ago. Since then its kind of been a lab experiment to get that back under control (including a HORRIBLE Cymbalta experience) but Celexa is working well for now. My fibro came on suddenly. I'm a personal trainer and extremely active and one week I just started feeling horribly overtrained. Everything hurt and was stiff down to my bones. MY feet and back were the worst, as well as my hip flexors. The worst was the exhaustion. I would come home and try to nap on the sofa between clients and wasn't getting any sleep at night. I had done a Zumbathon (latin dance workout) about 2 weeks before the symptoms started and it was outside in 95 degree heat on asphalt so I attributed a lot of what I was feeling to that.
Well anyway, I now have fibro.
I'm currently taking gabapentin which seems to help some, and xanax for sleep. For better or worse, I've always had an extremely hight pain tolerance but this thing just kicks my butt. I still work out but I've modified my routine and try not to do too much high impact stuff. I'm trying to add more yoga & mindfulness work while not letting my clients know how much it hurts just to demonstrate an exercise some days.
I have 3 pit bulls and my oldest is going on 14. She is extremely arthritic as well as having joint damage from RA when she was younger, but she still gets around and grins. I figure if I'm half as game as my dogs maybe I'll be able to deal with this :-).
Sorry this has run on so long. Its great to find this forum!
Hi! I am new to this forum as well and very glad to find a place where someone can understand what FM sufferers go through on a daily basis. I have had a diagnosis for 15 years now and although it is good to know that I am not imagining all this, it is taking it toll. I have worked on and off for years but at this moment it appears that I will not be returning to work this time. At the end of June I had a TIA which was the final straw and the wake uop call that working and forcing myself through the days with FM,. and 5 herniated discs was not going to work for me at my age. (49) I am currently taking cymbalta with a little relief but the pain and fatigue is overwhelming. Like most of you I must pace my daily life...ie:if I do the laundry I must plan a day or more of recovery time. My family has a difficult time understanding that at this point I just cant plan too far ahead as I dont know what each day will bring. Lousy way to live but... it is what it is. thanks to all of you in advance for your understanding and support.
Hi I am 23 and was diagnosed with M.E at 14... I've always had all the commonly known symptoms.
The thing is over the last year or so things have seemed to take a turn for the worse as I am writing this all of my arms are aching my neck and shoulders are killing me, I have started with really bad palpitations and shortness of breathe. My hips seems to ache all the time and my thighs to basically my entire body feels like its giving up. If I find myself in a busy street or around lots of people I get stressed and want to run a mile I get confused easy and have no energy or get up and go. I cannot walk up the stairs to bed without feeling severe pain and discomfort just walking around the house is a chore not to mention trying to keep up with my two young children.. I don't feel I can talk to my doctor as I don't have the confidence to ramble like I am here, I also get really bad headache/migraines and my face aches too
So basically my question is does anybody have any ideas what the hell is wrong with me???
I just wanted to say that I know how you all feel. I was diagnosed with Chronic Fatigue Syndrome about 3 years ago and finally with Fibro, although I believe I have had it longer. I had a nasty bout with the Epstein Barr Virus and I believe it is the cause of all my issues. It has given me peripheral neuropathy (they ruled out all other causes) and I take Gabapentin for that. Currently, I am on Savella for the fibro and it does seem to have helped some. I still have some bad days but I do wake up a little better and feel like doing things. Like the rest of you, if I do it all, then I take 2 days to recover! and that is hard when you are working also.
to emz_brent - do you take anything for your ME? It sounds to me like you have fibro too! I am sure others more knowledgeable will come along and post so look for those, but I would be talking to my doctor about fibro, if it were me.
Hi my name is Kathy I am 41yrs old and have been living with the pain and depression associated with FM. I have been under the care of 2 doctors in the past 5 years and I am currently taking 6 different medications for FM and arthritis. Some days are better than most, but when my stress level is up I hurt so bad the medications are no help. I have a very stressful career and my doctors seem to think that my FM and arthritis is due to/from my line of work, or at least it has not helped it. Anyway I was hoping to get some insight on how long and how many medications other people that have FM and what works best for them. I was so glad when I found MedHelp, I have learned so much. I wish I could get my husband to sit down and read some of the posts, than maybe he would understand better what I deal with on a daily/nightly basis.
I am on Savella for my fibro, just started it about 2 months ago, and it does seem to be helping somewhat. I also take Gabapentin for my Peripheral Neuropathy and I have read that some people also take that for Fibro. I take alot of meds because I have a heart condition also and thyroid too, along with Chronic Fatigue Syndrome, so won't list them all. Stress definitely makes Fibro worse! If you work a stressful job 40 hours a week, that won't help it any, sorry to say. I only work part-time and am considering quitting because it is just too hard for me to work. I have to lay down everyday or I can't function, even on the meds. Others will hopefully answer you too, but remember, each person is different!!! But this is a wonderful community and you can get some comfort coming here. I would suggest that your google Fibro and print out some articles for your husband. I did that and also sent some to close friends. They still don't understand really but it helps a little bit. Unless you have it, you can't truly understand, but he can try better!!!
Hi my name is Wendy and I am new here to this group. I just stumbled upon this site when I was looking up "Discontinuation Syndrome from Flexeril" which I am going thru right now.
Anyway, I was diagnosed with severe Fibro back in 1999. I am on SSD now, since 2005. I am also on Disability Retirement from my former employer since 2008. I last worked as a legal secretary in March, 2002. I look forward to making friends here and offering support and learning more about this illness.
Hi my name is Wendy and I am new here to this group but not new to Fibro. Let me take this time to tell you a little about myself.
I am 46 years young, married and do not have children. I live in NJ. I have a cat who keeps me company. I am no longer able to work due to my severe Fibro and chronic pain and other health issues. Unfortunately throughout my life I have had other health issues/concerns. I also have sadly been involved in 4 motor vehicle accidents, the last one being in 2008 in which my car was totaled and I really got hurt. I suffer from post concussion syndrome from that accident, dizziness and I had to have surgery on my left hand which I also hurt in the accident but my left hand is really very painful and almost useless to me now.
I am on SSD. I applied for it in 2002 and I got it in 2005. It was a long and stressful road. I had to stop working in March, 2002. I am now on Disability Retirement from my former employer.
I see a chiropractor once a week and my psychologist once a week. I do suffer also from anxiety and depression not only from my Fibro and not being able to work but alot of personal issues I have.
I look forward to getting to know everyone and lending support and listening to others.
My name is Cat. For years I've suffered with a horrible bad back. I think they are "bulging" discs. Doing yardwork last year I reinjured myself and my foot is still numb. I cannot wear heels or my leg gives out. I can't sit, stand or lay comfortably for any period of time. I live with it. I also can't afford another MRI, which I need. I was told ten years ago I'd need to have something done about now. (those records may no longer exist) On top of this, for years, I was given a diagnosis of Lupus. That doctor lost his license. He was givng me pills to stop the side affects of other pills! My new doc retested me and says I don't have Lupus, but we have not pursued anything. I will lose my insurance again shortly, what little I have.We have tried to keep things out of my records to help. We have not talked at length about Fibermyalgia, or other things that could be giving me so much grief. I have pain all over. I've done my resesarch and I see myself here. All the way down to the lack of concentration and insomnia which I've had since a teenager. (this week I went two nites with NO sleep) I have a high tolerance to drugs and doctors don't believe me, not wanting to give me stronger pills or accusing me of drug seeking. I know with winter coming, and I live in CO, the cold will make this worse. IF all this pain comes back, and it is already doing so, it's time to attempt to get disability. I've always taken care of a huge house and done all the yardwork as well as take care of a pool. We have tons of evergreens. I trim them. I have a reciprical saw and I take huge limbs off the trees, or always have. Last year while once again doing leaf clean up, I drug a bag that was a bit heavier than I thought and hurt my back. As always I blew it off. It has never healed. My left foot is numb, if I do too much it creeps to my knee. I cannot wear heels as my left ankle now collapses. (that never happened before this last back injury) Having no insurance I couldn't get anything done but get a bottle of muscle relaxers. Yuk.
I don't know if I have Fibermyalgia or what. I just know I cannot do my normal activities. If I type for a couple hours, the next day my fingers and wrists kill me. Walking up stairs can be painful. I EVEN spent hours at the ER for horrible pain in my ribcage, front and back I could no longer tolerate. (it would appear it's only the push up bra, I figured it out but it doesn't matter how much I loosen it, the pain will come back and I am NOT big busted. That is NOT normal)
My husband has asked me to apply for disability for a couple years now. Since I know I cannot even help with the leaf clean up this year I'm thinking perhaps it's time. (I have my own little business, doing filing, typing, etc from home but have had to about give that up) I don't know where to even start. I prefer to do things on my own but I can no longer do it and I don't want to hurt myself even more. Where do I start? I know so many people on disability and they get around better than I do. I won't give up but any help I could get would help my family.
I am a swimmer. Until this year I swam laps in my heated pool for about 12 yrs. I was up to 150 laps a day in a 16' x 32' pool. (long story, lost the pool, got it back by mid august so I've had little time to work back up to strength) This year I could not swim a single lap unless I took Ultram first. TOO painful. This would be the first year I've been off it and the anti inflammatory the old doc had me on. Now winter is upon us. As the temp drops, the pain starts. My joints, and,, my legs compltely ache top to bottom.
I have a history of migraines (much better by the way), IBS, sinus problems and kidney stones, and back problems. also TMJ. I think that's the worst of it! My old doctor pretty much blew off my pain after saying it's Lupus, live with it. So I know I have to live with a good deal of this, but if Disability could help my family, or, get me better medical care it would be a major blessing. I miss being able to work outside all summer. By the time I finished cleaning my house there was nothing left for anything.
That's most my story so if anyone can help me I'd appreciate it. I've no car, hubby works 24/7 trying to get us a second one. I may lose what's left of my insurance soon. What do I do? Thank you for having me. I'm so lost I can't even think anymore. Since I was self employed, I can't ask for help from an employer. Any advice will be helpful.