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9:24 am
September 12, 2008
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Healer
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Has anyone had any luck with Doctors that are sympathetic and/or knowledgeable about FMS? I haven't been terribly lucky. My Dr's have all seemed to kind of nod and go through the motions, but none have really been too proactive. I sometimes think they don't know enough about it to really feel empowered to help anyone.
I haven't really seen any specialists, though, so I'm speaking mainly about family physicians. What you got to say in this..also do we need to see any specialist..for all these kind of things…or I think I should only change my physician..as they taking it too lightly
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9:29 am
September 12, 2008
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Liz
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I am diagnosed by a doctor in the hospital .But before that happened I walked around years with pains, had several doctors, and left most of them after half a year because of the feeling not being understood well, or the lack of help/intrest. Or maybe it was just because they didnt know what was going on or felt unable to help. For me it looked like they werent competent. But now I have a good doctor, she is very understanding and gives good advice, sents me to special therapy and stuff like that. I've also been to a how to deal with pain course in the hospital
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9:30 am
September 12, 2008
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Liz
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Here they helped people to deal with the pain, mentaly and physicaly, its a kind of training which was good. Looking back now it going a lot better with me these days then 5 years ago, before I was diagnosed.
It took me ages to find a good doctor. I LOVE the one I have now. Instead of acting like I'm a hypocondriac, even if I come in with a lisst of 4 things a month he still keeps an eye out for problems I'm ignoreing.
It's well worth finding a doctor who really listens. You stop feeling like you're mad!
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9:36 am
September 12, 2008
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James
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For me it's even harder to find specialists. Currently I just see my GP.
I'm a bit wary of specialists, since i went to the pain clinic. I don't really want to try medications and such, since I'm so sensitive too them now.
Though I have been refered to an allergy clinic. Apparently Candida has alot of the same symptoms as FM, and can make it worse. So I will be trying a new diet an such things. I was very impressed though with this allergy doctor, as most are really flakey. He seeems firmly rooted in science.
(sorry I'm not at my best and most coherant. I'm having withdrawl symptoms to a medication I'm quitting. So If I'm not making sense just ask again 
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9:39 am
September 12, 2008
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Helper
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Physical Therapy!
My doctor really doesn't know much about FM, but she's really awesome because she trusts my judgement about myself. If I say I can't sleep, she prescribes sleeping pills. If I say I'm in pain, she gives me a prescription to see physical therapy.
I have found the best physical therapist ever. Unfortunately I don't think they exist outside of the upstate NY area. They are Core Physical Therapy[http://www.corephysicaltherapy.com/index.html], and they rock. I've never been to any other PT where I go in hurting and walk out feeling like I don't have FM at all. There may be other clinics like them around, I just don't know of any, unfortunately. Check out their site - they have some advice on finding a practicioner elsewhere, and some good information about what they think fibromyalgia is.
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9:43 am
September 12, 2008
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Healer
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It seems that we people with FMS tend to know more than our doctors. Mine, too, will just trust me, as I guess nobody knows more about what works for FMS than an FMS patient. I had a doctor in the past (the one that I really liked and moved away from) who prescribed me a sort of cocktail of very small doses of two or three prescription drugs. It worked quite well, and even though my current dr doesn't quite understand my previous dr's reasoning, has continued to prescribe the same thing.
One doctor I had seemed to really sympathize with FMS patients, and once said to me in total confidence, “You know it wouldn't be the worse thing in the world to pay a visit to your local marijuana dealer”. I'm sure she could have gotten her license taken away for that, but it was amusing, and kind of neat that a dr would even go there.
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9:46 am
September 12, 2008
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Helper
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hehe.. mary jane is not an option I'd considered for dealing with the pain. But then, I dislike the brain fog more than the pain, and I don't think it would help clear that up 
The medical community at large not only knows very little about FM, a lot of them (mostly male, from my experience - women are just more empathetic in general I guess) deny that it exists.
I did hear of one doctor who can help - you go live with him for a month and during that time he prescribes different pills, therapies, etc., until he finds one that works.
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9:47 am
September 12, 2008
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Helper
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I've never been, and I don't know anything more about him than that. I read it on another fibro community a long time ago. I dunno, I'd rather not be a lab rat for something like that, but I guess for really advanced cases where you can't work and you've lost all hope, it might be a good solution. I can't imagine what it must be like to have a more severe case than I have.. but I know mine is really mild in comparison to most, it doesn't really stop me from doing anything, its just annoying. Only about 3 times a month is it so bad that I can't move, think, or anything.. I'm very grateful for that.
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9:50 am
September 12, 2008
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Dolly
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Hi im new.. but i have gotten to the point that doctors are just a waste of my time. he ones i have seen are so clueless to anything. I have had 3 doctors tell me it is just in my head. i just try and read and learn as much as a i can on my own ..
its not in your head
Doctors that tell you its all in your head are a waste of time, or they are to afraid to admit that they dont know what you have and arent helpfull to find out or they don't believe fibro is a real disease…..
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9:51 am
September 12, 2008
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Dolly
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But the best thing to do then is close that door behind you of their office and dont come back, look for another doctor! I've moved doctors about 12 times in the last 5 years, due to moving but also due to not understanding. What I did the last few times is asking if I could speek with the doctor before I decided to become a patient there, and in that little interview I would ask the doctor about what he/she knew about fibro, and what they think could do for me. This really helps for me as I even said after that little talk to some doctors, sorry I dont want to become your patient.
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9:52 am
September 12, 2008
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Dolly
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I dont know about other countries but here in the Netherlands only a specialist in the hospital can *make* the diagnose fibromyalgia, which is a good thing cause now I can allways show the paperwork which tells I have it, so that they dont ask who diagnosed, or did you look on internet and decided you have it (this question was asked a lot in the beginning). A good doctor is a must, but people who you can talk to/with about fibro was and is a good help for me. But I try to avoid big forums where a lot of people complain or are very negative about themselfs, their life…. Okay firbro is no fun, but at least I try to make the best of it and I think most people here are like that
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9:56 am
September 12, 2008
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Helper
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I find the same thing Some of the fibro groups out there are scary. Some are a little too sickly sweet, “give everyone hugs”, and others just seem to bring you down.
Currently I'm only a member here and at Live Journal.
I find you also have to watch which books you read, and which websites too. There are alot of people out to make money on fibro.
The best advise I can give a newbie is /REALLY/ think hard before you take the doctors up on those meds they offer. From what I've seen of people talking about it, Teenagers and Newbies seem to get obsessed with medications….and in the long term they don't really work well as an option for most people. Often the medications cause as much or more trouble than they are worth. The following link kinda gives you an idea what a cross-section of a Fibro Community think. (I've desicorvered there seems to be a silent Majority who don't take medications.)
http://www.livejournal.com/community/fibromyalgia/362730.html
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10:01 am
September 12, 2008
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Dolly
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Yeah i find that a lot of the people i talk to that have fibro have the same outlook as i do. I mean you can’t wallow in neg. it wont help anything…There are great things in life to see and know and fibro cant stop that. i will continue to look for a doctor .. if i complain about anything it is about how frustrating it is….
thank you for your advice …its so awesome to be able to talk to people about this. It makes me feel some kind of bond with the people who are suffering with things similar to .
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10:06 am
September 12, 2008
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Helper
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Some FMS societies keep lists of doctors. Or you can ask the arthritis society.
My specialist is Dr. Ronda Schuckette in Vancouver. She's really nice and very understanding. However one time I had to see this other doctor in a nearby city here. He was clueless and discriminatory. He acted like he'd never seen someone that wasn't an 80 yr old with arthritis. I was about in tears when I left his office. I think my other doctor(or perhaps doctors as I complained also to my GP) might of called him up and had a few words with him. I had a bone scan around time of that appointment and it showed wide spread arthritis as did a some other tests. But I think he also didn't quite believe FMS existed either. 
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10:07 am
September 12, 2008
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Helper
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My family doc is pretty good. And my regular specialist. Tho I've only really seen her twice. I'm tolerant to most drugs and allergic to several others so there isn't alot they can do for me.(I also have more than just FMS wrong tho my specialist before said there can be something like 37 coexisting things with it) I also for awhile turned the antidna test positive with a +2… I had the test redone last year and it was normal finally. But prior to that they figured another one of my things was MCDNOS… and they've still not fully discounted it.
Out of curiosity tho how many here are also neuroatypicals? I've found several people I know on the autism and ADD spectrums seem to have symptoms or dx of FMS as well.
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10:10 am
September 12, 2008
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Tears
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We were talking about this today.
I'm dyslexic, and there are theories that it's something to do with mixed signals from the inner ear. And Fibro apparently you can have problems walking into things, and being unsure of your location in an enviornment.
My husband makes fun of me or may be he thinks this all is funny…because I seem to have little depth perception when for example, I try to put a glass down I just keep moving it till it stops. Occationally though this means I slam it into the table, as I expected to have farther to go.
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10:13 am
September 12, 2008
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MaX
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My family Dr dropped me, because he had been prescribing opiates, but suddenly became uncomfortable when the feds started cracking down on things in the New Orleans area. We had a lot of fly by night pain specialists. Now I see a legimate pain specialist who writes my scripts. I also have restless leg syndrome, which drives me even crazier than the fibro, if you can imagine that!..but the specialist to say the least..can make me comfortable..though I have much pain to talk about all of them..but he seems to kind of understand things…and not like anything I feel that he doesn’t understand my problem or my pain.
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