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,
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.
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!
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.