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Fibromyalgia Community
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975514 tn?1324997938

Welcome & Introduce yourself to the Fibromyalgia/CFS Forum!

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.

• CFS/FMS Tracker - http://www.medhelp.org/land/health-trackers
• Pain Tracker - http://www.medhelp.org/land/pain-tracker
• Mood Tracker - http://www.medhelp.org/land/mood-tracker
• Weight Tracker - http://www.medhelp.org/land/track-weight-loss

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.

http://www.medhelp.org/medical-information/show/124/Fibromyalgia

http://www.medhelp.org/medical-information/show/636?section_id=27670#sec_27670

I urge you to introduce yourself below and tell us a little about what brought you to the Fibromyalgia/CFS Forum. Again, welcome to MedHelp and the Fibromyalgia/CFS forum!

Sincerely,

Your Community Leader,
Dustybrown
181 Responses
571499 tn?1300217376
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.

Thanks and good luck to all,

Dave
975514 tn?1324997938
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.
-Dusty
571499 tn?1300217376
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.

dave
Avatar universal
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.
975514 tn?1324997938
Thank you and welcome to the FMS/CFS 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!


  
509215 tn?1363535823
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.  
571499 tn?1300217376
I used to get horrible, twisting, painful cramps in my legs and intercostals (rib muscles) regularly, but I never realized that it was probably from the fibro.
Avatar universal
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.
975514 tn?1324997938
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.  
Avatar universal
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.
329994 tn?1301663248
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.
Thanks!
Colleen
571499 tn?1300217376
Savella knocked out 100% of my pain immediately. I realize that it's not a cure, but it really worked well for me so far after about 2 months.
975514 tn?1324997938
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.
-Dusty
Avatar universal
Hi,
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.
975514 tn?1324997938
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!
Sincerely,
-Dusty
Avatar universal
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.

Thanks

1130095 tn?1267369259
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.
975514 tn?1324997938
Hello!
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!
-Dusty

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.
-Dusty
1130095 tn?1267369259
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.  

X
1161382 tn?1262741677
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.
Raevenskye
975514 tn?1324997938
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.  
-Dusty
Avatar universal
Hi,
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.

Take Care,
975514 tn?1324997938
Thanks for the update. I was wondering how you were doing. I will take a look at your updated blog.
-Dusty
678449 tn?1263554616
Hi,
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.

Hoping all is well.
Michelle
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