My GP is AMAZING and has been doing everything she can to try to help me manage the Fibromyalgia and she's got a good head on her shoulders as well. I trust her completely, I really really do. But nothing is working.
I am now considering looking into maybe a Rheumatologist. What is your opinion and what suggestions do you have for finding one who is highly knowledgeable in treating Fibromyalgia. Or, do you have any other suggestions? I have already been the route of a pain management clinic and all they did was throw tons of drugs on top of drugs at me, nearly killing me due to drug interactions. I refuse to go that route again - And by the way, none of the narcotics or muscle relaxers helped with any of my pain.
I'm just very frustrated and tired of feeling like my life is on hold or at best, spotty. I'll be 40 in a few weeks and I'll be graduating college in a year and my biggest fear is that I won't be able to get a handle on my Fibro by then and therefore, I won't be able to hold down a job once I finally get my degree that I've worked so hard for. It will all have been for nothing. I need to find a way to gain control over my body instead of my body controlling my life.
I live in the South (U.S.) and Friday evening I started feeling achy and crampy and it got worse and worse and all of a sudden - I couldn't even touch my own skin. I seriously considered going to the ER to see if they'd even consider giving me a shot of Demerol. I don't even know if it would do any good. EVERYTIME I suddenly start to hurt all over, out of the blue, I ask my boyfriend "We don't have a storm system moving through, do we?" and EVERYTIME the answer is "Yes".
Is this JUST ME?
And if I'm not some freak of nature that can detect the change in the barometric pressure, then - what do any of you do when the pain hits you. If you're like me then you understand that THIS is not the USUAL Fibro pain... this is... I can't even describe this pain. This is torture. And there's nothing I can do about it.
Good Luck to you. I take Topamax (but at a very high level) to try to stave off the Fibro Headaches. It doesn't work all that well for me. However, my Neurologist, My Family Practitioner, AND My Psychiatrist ALL like it as a mood stabilizer. Unfortunately, it doesn't seem to work too well for me for that either. It also has some not so pleasant side effects. The "Plus" side effects are: It cuts your appetite and it combines (Negatively) with acids (Like Carbonic Acid in soft drinks - that make them fizzy) and makes them taste HORRIBLE... and carbs/chocolate as well... so you'll generally end up losing a fair amount of weight and eat better/healthier with better portion sizes! Personally, I have NOT found Topamax to help with Fibro pain. I'm sorry. I hope your experience will be different. However, a Neurologist and/or a Rheumatologist are both great places to start! I wish you the best and I hope you start to feel better soon.
Hi, I see I'm about a Month late on this - And, I'm not the Physician here.. but I wanted to say that years ago, when I was first diagnosed, I tried Savella for a while. There were only a few reasons I didn't stay with it for long. However, what I wanted to note was, when I tried it, I had NO side effects and especially NONE of those. As a matter of fact, the only thing I DID notice was that while I was on Savella, I didn't have a SINGLE headache the entire time. Not ONE! At the time, every physician I mentioned this to told me I was crazy and didn't know what I was talking about because Savella 'isn't a migraine medication' but at the time, "Fibromyalgia Headaches" were not a 'known symptom' either. I hope you either got over the symptoms VERY quickly or, what I personally would have done or suggested, got OFF the Savella. And, Unfortunately, I didn't find that Lyrica did anything for me either. I understand your frustration. I'm so sorry. I hope you're feeling better now that some time has passed. Good Luck and Best Wishes, AlixView Thread
I meant to add ^^ or B.) (related to Pain Medications) Make the tremors stop. Tremors aren't a pain issue. They're nerves/neurological. And while, yes, Fibro pain is as well, well... Actually - that's why Pain Medications don't make the pain go away or ease up. You're not truly in physical pain - You're in neurological pain. OR - at least, in my case, that's how it is for me. What we've been able to figure out is (Because Fibromyalgia is a 'blanket term') I have a breakdown in communication in the neurons and when they get confused as to what message they're supposed to be sending/relaying to the brain, they automatically default to 'pain'. So, Luck for Fibro people, huh? Couldn't be a feeling of euphoria or strength or mental well being, hmm? No. Pain. So, a medication designed to lessen physical pain or dull the senses will only dull the senses. It basically just makes you not care AS MUCH that you're hurting so badly. I'm not trying to be negative or rain on your parade - I'm trying to give you realistic facts. Massive dosages of multiple pain medications - LEGALLY PRESCRIBED by a pain management physician at a Reputable Pain Management Clinic - almost killed me. I know it sounds dramatic and exaggerated but, please believe me when I tell you it's not. If you find that the pain killers are not working, as I'm saying - PLEASE, just accept that they aren't going to and discontinue them? Why put something in your body that isn't going to do any good? Don't we suffer enough? I've been at this for so long now and looking for answers and solutions for so long now.. I just want to help people - Especially if I can spare them my mistakes. Best, AlixView Thread
Some medications can CAUSE them as a side effect so, while not trying to pry, it would be helpful to know what you ARE on - but your doctor would be the BEST person for that, not me. On your next visit, bring EVERY SINGLE THING YOU TAKE WITH YOU. Bring the actual bottles. If you take an over the counter multi-vitamin once a day, bring the bottle. Trust me! (This saved my life once - NOT JOKING!) Now, on the other end of the scale, I do have a tremor. It is always there. It always has been. Sometimes, it almost seems like it's not. And sometimes, it's so bad that I cannot write. I have found that for me, my pattern/trigger is stress - Pretty much like everything else with Fibro. The more stressed or anxious I am, the worse my tremor is. The last time I check the 'symptoms list' for Fibro, tremors wasn't on it - but when I was originally diagnosed, "Chronic, widespread pain" was pretty much the ONLY symptom. Years later, all these unexplained 'symptoms' I've had FOREVER slowly get added, one by one, to the list of Fibro 'symptoms'. As for flexeril, I know that everyone is different AND... Please NOTE: **my body has a tendency to react very oddly and unusually to chemicals - reactions that MOST PEOPLE DO NOT HAVE.... but, I cannot take flexeril. It makes my muscles crawl... it's absolutely horrible. I can't sit still. I want to claw the muscles in my arms, just under the skin, right out to make them stop twitching and jumping and... UGH. I can't stand it. So, think about when the twitching started and think about "Is it worse after taking flexeril?" And like I said, that may just be ME because I have a family member who takes it and it works like a CHARM for them... but maybe it just isn't a good drug for people with Fibro? The BEST thing to do is talk to your physician. I have not found ANY pain medications that A.) Make ANY Fibro Pain Go Away or even lessen. I'm sorry. Good luck. I hope you have better luck with that. All I find is that it's good for dulling the senses and, if I'm lucky, maybe I can pass out asleep for a while. Usually, when I wake up, I'm not hurting anymore or I hurt less. My personal assumption on this is that it also affects the neurons and makes them 'reset' so they're no longer sending the mixed messages of 'pain pain pain!' to the brain - but that's just what I, personally, think happens. However, My physician DID put me on a Beta-blocker for the tremors when they were really bad at one time. The trade off is that it makes you pretty tired and sluggish. I wish you the best of luck. Best Wishes, AlixView Thread
I have to concurr with Xperky about applying for Social Security Benefits. And yes, they LOVE to turn you down, sometimes, several times in fact, before approving your disability but this IS a disability. I had the same problem with the migraines as well (And by the way, If you didn't read my long, rambling rant/answer to another person's question, if your headaches are starting at the back of your head - which with Fibro, they probablly are - you are having Fibromyalgia Headaches, not Migraines) HOWEVER, Good News!!! Migraine Medications Work!! (At least for me!) Immitrex (Not sure on the spelling) even has a generic out now because it's been out on the market for so long. And, when you qualify for Disability, you should qualify for Medicare as well which will pay most of your Rx costs. There's also Treximet which is newer. It's just the Immitrex with extra Naproxen Sodium (Aleve) in with it so, if you get the generic immitrex and it doesn't quite do it, take a few naproxen. If you do manage to get really good health insurance, say though your husband's work coverage, then see if a physician will prescribe (And the insurance will pay for) Savella. It's one of only 3 medications approved (So far) to treat Fibro. At the time I tried it, I expected my BODY pain and my unbelievable fatigue to ease up. I didn't notice that it helped with that. But I noticed that I didn't have a SINGE Migraine the entire time I was on it. Every doctor I mentioned that to told me that I was crazy and that I didn't know what I was talking about because Savella isn't a Migraine medication. Well, turns out, Years later, they finally list "Fibromyalgia Headaches" as a 'symptom' of Fibromyalgia. It wasn't a symptom back then. Yes, I often feel the helplessness and frustration. I'm a full-time Student and disabled and a single mom to an 11 year old - at the age of 40. I never know when I wake up in the morning if it's going to be too much for me just to make the 45 minute drive to campus much alone go to classes all day, study, do homework, take exams, cook dinner, clean the house, do laundry, spend time with my child, and on and on... I never know when I won't be albe to sleep for 3 days straight or when I won't be able to stay awake no matter WHAT i do. I can't make plans in advance because I don't know how I'll feel that far down the line. Yes, some days, I get SO despondant that I think MAYBE my daughter would be better off with someone else and NOT seeing me like this - when I'm having a bad Fibro day; when I can't get out of the bed; when I have to tell her she has to hug me gently, I hurt; when I'm short tempered because every inch of me is exhausted and in pain - how fair is THAT to an 11 year old of a single parent?? But how fair is it to leave her? So, I'm in school, working on a degree and trying to stay optimistic that once I graduate, I'll be able to get a job in the Field I already have experience in, that I'm good at, and maybe, with understanding, there will be a way to work out a schedule AND in the meantime, I'm working on trying to find a way to cope with my stress, depression, and pain in natural ways instead of popping pills for the pain. (BUT, I DO take anti-depressants and I do see my regular MD and my mental health MD regularly - who know each other and approve medications mutually and I comply with treatment - AND I see a therapist/social worker). The first step is the Depression. I *PROMISE* You - It makes EVERYTHING 1,000 times worse than it REALLY is. So, one step at a time. Get your depression under control FIRST. Work on that. It's a really HARD step, probably the hardest, but the most needed one and the one that will make the most difference. And remember that people are HERE (And There) For you. Good Luck Best Wishes, AlixView Thread
I've been diagnosed with Fibromyalgia for several years now and I'm sure, beyond doubt, that I've had it for MUCH longer than I've been diagnosed. One thing I learned was there is a difference between migraines and "Fibromyalgia Headaches" (which, by the way, are only recently listed as a "symptom" of Fibromyalgia). If your headaches start in the back of your head, it's a Fibro headache. If it starts at one of the frontal lobes, it's a migraine. (I found this out when my Neurologist looked at me like I was crazy when he asked me which side of my forehead my migraines started on). When I was originally diagnosed, I was tried on Savella. It was still a brand new drug on the market. Almost NO pharmacies would even order or carry it. When I found a pharmacy that would, my insurance refused to cover it because of the cost. I was able to get physician samples for a while. I didn't notice it made any difference in any of my 'fibromyalgia pain or fatigue' and seeing as it was near impossible to get and keep a running supply, I was weaned off of it shortly after. However, whenever I spoke to any physicians, including a Rheumatologist about the medicines I've tried, I told them "The only thing I really noticed about the Savella was that I didn't have a SINGLE migraine the ENTIRE time I was on it." And every one of them told me the same thing; that I was crazy; That I didn't know what I was talking about; Savella isn't a migraine medication - But NOW, Years later, I find out that I didn't have *Migraines*, I had FIBRO Headaches. I have found NO information in my years of searching to suggest that Fibro is genetic or genetically Linked BUT, I have found studies that *SUGGEST* it CAN be ...(Searching for the correct word) "LINKED"?? to Low Vitamin D3 counts - Along with a Multitude of other horrific conditions. (Check out the official website for Vitamin D3 for complete, accurate and proper information). This is actually HOW I ended up Diagnosed. The test scale is 20-100 with 80 being the 'Optimal" level. I was doing a research paper on the Pros/Cons of "Avoiding sun to avoid skin cancer/Lack of sun and lack of natural Vitamin D3 production in the body" - What I found out astounded me and it just so happened it was time for my annual physical and bloodwork. I ASKED my physician to check my Vitamin D level. Mine was a 6. That's NOT a typo. Turns out my sister also has a low level and within the last year was diagnosed with Fibro. I don't think it's Genetic. I think it's circumstancial. Most people have become Vitamin D deficient b/c we no longer work out in the fields doing hard labor all day in the sun. We work in buildings with no windows or UV blocked glass. Even the windows on our cars are UV ray blocked. And without the UV rays, we don't make Vitamin D. I'm not saying Vitamin D is the CAUSE, I'm just saying, I think it plays a part. I'm willing to bet you have a low count. And the farther you live from the equator the higher your chances of a low level. Most physicians have started testing now. It's come to the forefront and gotten attention. Unfortunately, getting your count up doesn't seem to help any either. I had hoped it would. I think it's a 'too little, too late' thing but, still - get tested, and if low, talk to your physician about a suppliment. You also cannot absorb calcium without Vitamin D. You can drink all the milk you want or take all the Calcium suppliments you want but it won't make a difference if you don't have the Vitamin D. Also know that there is a difference between D3 and D2. You need the D3. AND..... I AM NOT A PHYSICIAN... Just someone who's had Fibro a REALLY long time, with a severe, advanced case, who has done a LOT of research, looking for answers and relief. I hope this has helped - and I freely admit that ANY of the above COULD be totally incorrect. But, I have written what I fully and truly believe to be 100% true from my own personal experience. Best wishes and good luck AlixView Thread