So I was basically told by my neurologist that I have fibromyalgia, in fact her husband has it too. She sent me to a rheumatologist who told me since there are no tests to confirm fibromyalgia, she was going to call it a “chronic pain condition” so that the other rhematologists in the clinic don’t dismiss me as they don’t believe fibro is real. So she gave me a muscle relaxed prescription and enrolled me in physical therapy. One thing she said really upset me. She said that most people who have fibro have stiff joints later in the evening and never in the morning. She then told me to visit WWW.myalgia.com for more information. So i went to the site and it says people have more stiffness in the morning upon awakening. She totally contradicted herself! I want to go to a competant doctor. Not one who doesnt even know what fibromyalgia is. I live in La Crosse, WI and I don’t know which doctors here are able to help.
The Neurologist was right by sending you to a Rheumatologist, unfortunately it sounds like the wrong practice. My suggestion would be to look for another one, away from this office! The National Institute of Health and the American College of Rheumatology both acknowledge Fibromyalgia as a distinct disorder, so it's discouraging to see that some doctors are still skeptical.
Hang in there Candi, and keep looking for that doctor that will help you. Sometimes it takes a lot of weeding through the doctors like you saw, but the good ones are out there, just keep searching!
Hugs,
Renie
I don't have any advice as I am newly diagnosed and inexperienced with doctors. I am wondering, what attributes we should be looking for in a Fibro- friendly doctor? I hope that's not off topic to this discussion and can build on your question.
Hi Jasmine,
Basically the best doctor is a Rheumatologist who will listen to you, is knowledgeable about Fibro, and is willing to work with you.
If they don't believe in Fibro, or they brush off your concerns, run the other way!
From a clinical standpoint, it's usually best to look for someone who is Board Certified, and preferably has their Fellowship with the ACR. But I don't think that credentials mean too much, if they won't take you seriously.
Good Luck!
Renie
Hi Candi,
I strongly suggest that you save yourself some time and aggravation and seek out an Integrative MD or DO or Holistic/Naturopathic physician. They will be able to help you. I mean really help you, and be supportive in your diagnosis. They won't load you up with drugs that just treat symptoms, they will try to address some of the root causes.
Take care,
Ally
Hi Candi,
My Chiropractor refers to my condition as myofacial pain syndrome, he feels it is more precise than fibromyalgia.
http://www.medicinenet.com/fibromyalgia/la-crosse-wi_city.htm This may help you find a Dr.
http://www.gundluth.org/nurse-advisor http://www.gundluth.org/healthlibrary/content.aspx?id=4118&sid=1&productid=117&pid=1&gid=000427
Hopefully these links will help you!
Wishing you well,
SK
Thank you! The Rheumatologist I was sent to seemed knowledgeable and she did diagnose me with Fibro. So that's a start. She sent my results to my family doctor and he can now prescribe medications for me based on her diagnosis. So, in that sense I guess I got a good one.
I'm Canadian, so I had to get a referral to see the one I went to. It took 6 months just to get in to see her. I won't be able to see her again unless things get much worse.
Since naturopathic visits are covered under my extended medical plan, I'm going to see one in January.
Oh hey! I live in La Crosse, WI as well! :D
I have pretty stiff joints in the AM sometimes and am a card carrying fibro. Fibro is a disorder, like many, with a huge variety of individual and maybe even idiosyncratic symptoms. I’ve had horrendous back or other pain for weeks that I initially get concerned about and then remember, oh, it’s undoubtedly fibro. so far, for twenty years, it always has been. Don’t ignore an acute pain that could be appendicitis or. Heart attack, LOL, but even severe muscle or joint pain, for me, has always been fibro, always eventually gets gets better, in that spot anyway.
It sounds like you're on the right track then Jasmine. I know things work differently in Canada, that waiting must be horrible! We have doctors here in the States that have a 3 month waiting list, and depending on the insurance we carry, we can be locked into that situation too. A friend in the UK had to wait a year for a Rheumatologist.
I hope the Rheumatologist was able to set up a treatment plan that is helping you, and it will be interesting to learn about treating FMS from the Naturopath. The best thing you can do is explore every option that available to you!
Candi,
My suggestion is to find a Naturopathic MD…they not only recognize and treat fibro etc…but they try to get to what is causing it! Because something is. A good Rheummy is fine but generally speaking they wont reach out past their medical box. Yes, this suggestion might sound off the wall…but I hate to see my autoimmune family waste time with docs who dont know what they are doing. Good luck girl!
Tracy 
I started out with my internist who sent me to a bone & joint doc who sent me to a reumatoligist who sent me to a chronic pain doc & now the latest is a psychologist because they cannot give me anymore meds they have decided its all in my head!! Yeh, right. All this vicious pain I have I’m creating myself for pity. I’ve lost my job don’t really go out much anymore & this is starting to take a toll on my wonderful husband. Is there any hope for us??
Hi everyone, I’m trying to find an informed doctor also. I live in the mountains of Pennsylvania, so there’s not a wide selection. I have to drive 1 1/2 hours into NY state to get to a shopping mall. By the time I get there, I’m too tired to carry my bags around, so now I bring a baby stroller around with me to carry the bags. I’ve had this condition for at least 25 years, been legally disabled for 10, and I need help with this pain. Lyrica worked initially, but not any longer. I’ve been taking Vicodin for about 8 yrs.,and it helps with pain, but I’d like to find something to prevent the pain in the first place. Is anyone on Guafinisen treatment? Does it help?
Hi Mary, Mary Beth here. You might want to do a search re: the guaifensin treatment. I have looked into it and have found nothing that indicates that it would be helpful. But I am not a doctor so maybe talk to yurs. There was a discussion some time ago on here about it and I think there were some good links posted re: the treatment protocol. BTW, guaifensin is the generic name for Mucinex and Mucinex is a decongestant. Good luck. Let us know if you find any good info.
Candi,
Guaifeneisin was an old theory. I know several fibro sufferers who tried it with no relief, just for the record.
Ally
Hi Mary,
Is Towanda anywhere near Spring Grove? I'm asking because there is a member on the Lupus forum (Kimberly)that is also in PA and looking for "informed", actually holistic doctor. I've been trying to google search.
Ally
Candi - I too live in Wisconsin and I don’t know what it is with rheumatologists here, but every office I have called within 50 miles of Milwaukee (biggest city near me) has told me that they will diagnose but will send you to a pain management doctor or clinic for treatment. Who needs to be told over and over and pay money to be reminded again and again! After a terrible experience with a pain management doctor who was supposed to specialize in fibromyalgia, I have an appt. at the end of January with a neurologist who also specializes in pain management, holistic medicine and acupuncture. I’m getting by on muscle relaxers and migraine meds, and am working with a neuropathic chiropractor who knows more about Fibro than any doctor I have seen in 20 years!
Your best bet Candi, may be the Mayo Clinic. It’s a few hours away, but they may then be able to refer you to someone near LaCrosse. I’m not surprised that you’re having a problem, but you would think that the Gunderson Clinic would have someone who could help?! Just keep dialing away and like everyone said, ask the right questions.
Good luck with your search as well! I will try all of the suggestions I have been given.
just in case if no one has mention it there is group just for finding doctors. I would suggest you post over there as well plus take time to read answers others have given. There are some great suggestions and ideas about what to think about you might want in a how a doctor treats you that you have not yet thought about.
I know most people agree...if you have local support group to go ask them as they have hands on experience with most doctors in your area. If you get a doctor you really like and fit well with than ask them too...most doctors tend to refer doctors like themselves. Last, if you know RN's working at hospitals you might ask them.
Good luck!
Personally I found a unique combination of specialists after a couple years of major struggles
My neurologist integrates Eastern and Western medicine into his practice. His office offers acupuncture, massage, yoga therapy and classes, NAET, homeopathy, nutrition, as well as Western medicine
He and my pain management physician ultimately recommended my rheumatologist, who also embraces all treatment options. I have struggled through many alternative treatments just as I have medications. Having a larger tool chest to work from had been paramount. I am only a newbie- diagnosed end of August. Best of luck!!