Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi all,
I have been dxed with fibro for over two years now. I have a real book on it somewhere and at least two kindle books on it. Yet despite that and all the research I have done I still don't know what fibro really IS. This is what I do know: I have severe muscle pain that happens for no reason and gets much worse if I over exert myself. I also have horrendous joking pain that I swear has to be just like the pain RA people have (well my doc actually thinks I will end up with RA cuz my numbers are not quite high enough to dx but are too high for the average person to have also, so we are just playing the waiting game) and I also know that I have nerve pain that makes me cringe just thinking about it!!! Actually the nerve pain is definitely my worse problem.
So, with these things that I do know, without a doubt, where does that leave me? Not just me but all of you guys too. I have called two neuros that accept my insurance but right off the bat they told me that they do not see people who have fibro. Then I was seeing a whiny in Austin for what I thought was RA, he dis a bunch of blood tests which came back negative and he told me (in a very rude and arrogant manner) that all I had was fibro and he does not treat people with fibro but he knew of one rheumy in town who did, but SHE was not on my list. (notice the emphasis on SHE....I sometimes believe that because more women have fibro than men that male docs are prejudiced and seem to think that women are just high strung, nervous and stress filled people who have pain due to stress or they are hypochondriacs who just want attention)
So, anyway, I have struck out with the nerve people and with the joint, people and actually I have no idea who the muscle people are....maybe sports medicine or chiropractors??? So at this time I am seeing my internist who is an ok doctor for stuff like my high blood pressure or sinus infections but I'm just not too sure if he is the best choice for my fibro.
I will be seeing an Infectious Disease Specialist soon since I have chronic Cytomegalovirus and all kinds of other viruses (just found out I can't donate blood cuz I have been dxed with chronic fatigue immunological deficiency syndrome which apparently is caused by some virus, but dammed if I know which one!!). So I am wondering should I tell this guy I have fibro? Will he take my virus issues seriously? I really need my viruses treated cuz they are hitting me way too fast lately.
Anyway, after taking the long way to finally get there, I just want to know what you guys think is wrong with us. What doctors do you see? Have you had problems with doctors not wanting to see you because of your fibro, or is it just Austin? As crazy and laid back as this giant college city is there are some really wacked out doctors here. You would think that these doctors would be found in some little back woods hick town and that a big city like Austin would have progressive thinking doctors, cutting edge thinking to go along with the cutting edge technology. Nope, not here folks. A friend of mine on this board lived in San Antonio and she has this really great rheumy that she sees. I will probably try to see him if my insurance allows. That means an almost 4 hour round trip just because my nearest large city has nothing but wacked out, backwards, hillbilly doctors who probably line their exotic birds cage with their never read copies of JAMA. Pathetic and so sad. I did call my internist the other day when I was in so much pain. I told them that I had heard that Savella was supposed to be really good for fibro and the nurse called back and said they had called me in Tramadol. So I just don't think I want to keep seeing someone who is not taking my fibro seriously.
Any ideas? Any answers? Any suggestions? Any advice? I would appreciate anything any one has to offer.....
Friends,
Irish
I have been dxed with fibro for over two years now. I have a real book on it somewhere and at least two kindle books on it. Yet despite that and all the research I have done I still don't know what fibro really IS. This is what I do know: I have severe muscle pain that happens for no reason and gets much worse if I over exert myself. I also have horrendous joking pain that I swear has to be just like the pain RA people have (well my doc actually thinks I will end up with RA cuz my numbers are not quite high enough to dx but are too high for the average person to have also, so we are just playing the waiting game) and I also know that I have nerve pain that makes me cringe just thinking about it!!! Actually the nerve pain is definitely my worse problem.
So, with these things that I do know, without a doubt, where does that leave me? Not just me but all of you guys too. I have called two neuros that accept my insurance but right off the bat they told me that they do not see people who have fibro. Then I was seeing a whiny in Austin for what I thought was RA, he dis a bunch of blood tests which came back negative and he told me (in a very rude and arrogant manner) that all I had was fibro and he does not treat people with fibro but he knew of one rheumy in town who did, but SHE was not on my list. (notice the emphasis on SHE....I sometimes believe that because more women have fibro than men that male docs are prejudiced and seem to think that women are just high strung, nervous and stress filled people who have pain due to stress or they are hypochondriacs who just want attention)
So, anyway, I have struck out with the nerve people and with the joint, people and actually I have no idea who the muscle people are....maybe sports medicine or chiropractors??? So at this time I am seeing my internist who is an ok doctor for stuff like my high blood pressure or sinus infections but I'm just not too sure if he is the best choice for my fibro.
I will be seeing an Infectious Disease Specialist soon since I have chronic Cytomegalovirus and all kinds of other viruses (just found out I can't donate blood cuz I have been dxed with chronic fatigue immunological deficiency syndrome which apparently is caused by some virus, but dammed if I know which one!!). So I am wondering should I tell this guy I have fibro? Will he take my virus issues seriously? I really need my viruses treated cuz they are hitting me way too fast lately.
Anyway, after taking the long way to finally get there, I just want to know what you guys think is wrong with us. What doctors do you see? Have you had problems with doctors not wanting to see you because of your fibro, or is it just Austin? As crazy and laid back as this giant college city is there are some really wacked out doctors here. You would think that these doctors would be found in some little back woods hick town and that a big city like Austin would have progressive thinking doctors, cutting edge thinking to go along with the cutting edge technology. Nope, not here folks. A friend of mine on this board lived in San Antonio and she has this really great rheumy that she sees. I will probably try to see him if my insurance allows. That means an almost 4 hour round trip just because my nearest large city has nothing but wacked out, backwards, hillbilly doctors who probably line their exotic birds cage with their never read copies of JAMA. Pathetic and so sad. I did call my internist the other day when I was in so much pain. I told them that I had heard that Savella was supposed to be really good for fibro and the nurse called back and said they had called me in Tramadol. So I just don't think I want to keep seeing someone who is not taking my fibro seriously.
Any ideas? Any answers? Any suggestions? Any advice? I would appreciate anything any one has to offer.....
Friends,
Irish
I have run into this a lot lately. I have the diagnosis of "recovering from severe pelvic injury". Too many doctors, this now means any of my complaints are automatically related to the pelvic injury, no matter how outlandish the connection could be. After all, doctors get paid their $40 co-pay or whatever whether they bother to do a good job or not. Why put in the intellectual effort if they can just blame it on a previous diagnosis. I hate to say that about a profession I once desired to join, but experience as a patient has taught me a lot more than medical school ever could have.
As far as fibromyalgia of the disease goes, what triggers it is probably very different in different people. What it is seems to be is a dysfunction in the neuromuscular complex, on the molecular level probably, since at the end of the day everything in our bodies is a bunch of molecules, LOL. The dysfunction must probably originates in some sort of trouble in the brain, causing a registration of pain without actual stimulus. That probably sounds really weird, but as an epileptic, I've picked a bit up from neurologists, and the glitches that can occur in the human brain make me grateful every day that I am even capable of opening my eyes or walking across the room.
I am experiencing serious flareups of my fibromyalgia because of my injury. Any cycle of sustained, untreated pain can create what I guess you'd call a feedback loop. Sometimes that loop can be broken with medication, exercise, better nutrition, or simply the healing processes of the body. Sometimes that loop can't be broken, and the brain keeps getting pain messages, even when the body is not necessarily sending them. I think of it a little bit like a migraine, only instead of simply giving you a headache, the mistaken feedback gives you the head to toe ache.
Didn't mean to ramble, not enough sleep, too much pain. Good luck!
Smiles, Leo
I would like to thank you both for your truly wonderful gifts to me. Leo you have me logic and a firmer understanding of what fibro is, not to mention the real lowdown on docs and their attitudes.
Carmella you have given me compassion and with your quiet yet truly heartfelt words you have given me the courage to not (give up the good fight....as they say on the MS board...)
So Leo, I myself thought it had to be neuromuscular. I am a nationally certified registered medical assistant. Us students used to say that we might as well be going to medical school because of all that we were learning. We spent a whole month, 4 hours a day, 5 days a week studying one body system at a time. We really did learn things that we're way out of the scope of a CMA's duties. Plus I have always been interested in medical issues, reading JAMA or the Lancet for enjoyment. But then you guys see what fatal flaw has gotten me labeled as a hypochondriac...I talk the talk way too well.
But anyway, like I said I also think it is neuromuscular. if this is the case then why do so many neurologists and rheumys refuse to see us? I just remembered earlier that I had seen another rheumy and she also told me she would not treat my fibro. Are they being contemptuous towards us? Do they think we are hypochondriac? I mean fibro is now a recognized disorder and physicians are having to actually take CE classes that deal with fibro and sensitivity training towards fibro patients. Its really so sad the way we are th treated, kinda like lepers but at least the lepers truly knew what was wrong with them.
Well I better run for now. Thanx again for the great advice and for the much needed empathy. I can only hope that I can help you guys out someday!
Friends,
Irish
I see an internist for med maintenance now and feel lucky to have found someone that would not try to change my regimen which is keeping me sane. I did see her colleague in the same practice first and had a horrible experience that ended with her shouting at me that "nobody is disabled from Fibromyalgia"!
So don't think all doctors in Austin think the same. The good doctor that you're looking for may be right under your nose. You just need to keep asking other people in your area that have this condition. Reach out to FM support groups in your area.
Leo is dead-on about the symptoms. Let the doctor get there on his own. Its probably a doctor's ego that causes the impatience with previous doctor's word, but again, just guessing.
A hot shower REALLY helps if you have the energy to get up. I often don't during a flare-up, but still try to drag myself to the shower anyway because it really helps me with the ache/pain. Asprin actually does pretty well for me too, believe it or not. But I'm also on Tramadol so the Asprin is probably working with that. The only other thing I can recommend is to find a way to distract yourself. I do video games, or TV or read a book. Those work nicely for me. Sometimes I can't be distracted, but there it is. Flare-ups suck, thats all there is to it...
I'm really here to comment on redsilverfoxes addition. (Disclaimer: I am not flamming, negating or bashing your advice in any way redsilverfox, it was quite informative and I even learned a thing or two! Also, I am not a doctor or medical professional and my advice is not medical advice in any way shape or form.) WHEW, that said...
..I have been on Tramadol since 2007 for pain related to Ulcerative Colitis. RA is a common "piggy back" condition with UC and Crohn's and thus, I have very slowly been developing arthritic pains in my joints and deep in my muscles and tendons as UC causes inflammation in the connective tissues (or so my rheumy explained and my GI confirmed) that feels very much like the stiff, achey, burning arthritis pains. As I said, I developed these symptoms slowly from 2006 to 2009. In 2009 I had a sudden increase in these symptoms and went from being a gymnastics instructor to not able to work until 2011.
The severity of the worsening pain worried me enough to see a rheumy, fearing RA had finally settled into my bones (and at such a young age, boo!).
But no, it was fibro. Did not expect to hear that one. I was relieved it wasn't RA but fibro hit me like a ton of bricks. My very long winded point is that for three years I was taking Tramadol during the worst of my UC flares for muscle, tendon and connective tissue pain. It helped immensely. However, since the fibro dx, Tramadol barely touches the pain and I have had to take more of it more often. I went from taking it 4 or so times a week to 4 times a day.
They will tell you that it is not habit forming and that is a bold face, flat out lie. The withdrawal symptoms are so bad that I dread, literally sit in fits of anxiety over losing my insurance and being forced to suddenly stop taking Tramadol. The withdrawals are THAT bad. And if you do a bit of research, you will find that while it's great for short term use (pain relief due to injury and the like), with long term use comes rather concerning side effects. Constipation is a common one that I didn't think I'd have to worry about due to the UC. But I have been to the ER twice in the last month due to Tramadol related constipation, so severe that I ripped the towel racks off of my bathroom wall before passing out and being rushed to the ER. Being on a liquid diet for the second time in a month is nothing compared to the god awful pain :(
Again, not bashing Tramadol because it worked wonders for me once upon a time when I only had one auto immune disease and endometriosis. It has helped so many in my various support groups but please, tread with caution when considering it.
I would also disagree with the statement "tramadol is a strong narcotic". Tramadol is actually very mild, and the whole reason I take it is because it does not make me high like most narcotics. It takes the edge off the pain so I can function. For me it is a godsend.
I've learned from friends that the quality of care available to someone with FM in any particular area is often a matter of politics. If the local medical authority, or hospital, or insurance commissioner doesn't believe in FM, that attitude filters through the system. I have a friend who had multiple diagnoses who was treated by specialists in Wash DC. Her husband's job forced them to move to CO. After a year of not being able to find anyone to treat her, she finally met the director of the hospital system. He flat out told her that he did not believe in FM and that anyone who claimed to have it was a drug seeking hypochondriac... and he didn't allow any of the doctors in his system to diagnose or treat it. So even if your personal doctor wants to be sympathetic, perhaps they are not allowed. She ended up having to fly back to Wash DC to see her doctor. They eventually moved to another state.
Personally I would find a way to move to a new place also. Our two main hospitals where I live don't recognize FM as a physical disease - they treat it as a pyschiatric condition. But I fortunately found a family doctor who was willing to treat me for years, and recently found a group of independent rheumatologists who have been wonderful. .
The neurological component to FM makes rheumatologists very shy of treating it, and the non-neurological aspects of fibromyalgia upsets the neurologists. Doctors are trained in such a narrow way that crossing disciplines scares the daylights out of them.
I get very frustrated by health systems that refuse to acknowledge a disease. It used to be that if you had epilepsy, you had better go clear to Boston Massachusetts for treatment, because outside Massachusetts General Hospital, very few health systems acknowledged epilepsy as a physical disorder. 60 years later, we think this attitude towards epilepsy is medieval. Twenty thirty years from now, people will probably think the same about fibromyalgia, that it is a physical disorder, and they will be amazed anyone ever thought it was purely psychiatric.
Change comes extremely slowly to the medical establishment. More or less, it seems that entire generations of instructors have to die before mentality changes. And of course, by then, that mentality is already going out of date.