How to find a rheumatologist to treat fibro

I had a wonderful Rheumatologist at Ohio State Medical Center. He's an expert on fibromyalgia and nationally known. Unfortunately for me, he is now the head of Rheumatology at University of Texas at Austin. He told me before he left that there isn't a Rheumatologist at OSU that treats fibromyalgia.

The rheumatologist was no help with my fibro. My best help has come from my PCP, who is a very experienced Nurse Practitioner, working in concert with a Pain Management Specialist and a Physical Therapist who specializes in pain management.
Sue

I moved to Texas 20 years ago from Indiana and previously Ohio. One thing that was immediately apparent about the rheumatologists here, they are not interested in treating you with a diagnosis of Fibro, which I have had this diagnosis since a car accident in 86 in Ohio.
I finally got into seeing one with the help of another doctor, since she trains her staff to screen and turn down callers with fibro. She is top notch, educated and even though highly known and recommended she has tried but not been much help. There doesn't seem to be an easy answer to treating fibro. I am loosing hope. I would love to have more info on this doctor in Austin so I might look him up.
Thanks

Yes, fibromyalgia has been and continues to be a widely misunderstood syndrome, and after over 40 years it is still not accepted as a diagnosis by many.

That is why I think it is important to seek a practitioner who "believes in" and will help me manage my fibro, rather than someone in a particular specialty. Since some of the hallmarks are chronic pain, fatigue and hypersensitivity, learning to manage these and live well was my goal. In addition, I live with arthritis & lung disease. That led my primary to partner with a pain management specialist and therapists.

This is by far the most effective treatment I have ever had, but it was no "magic pill" - it involves my efforts every day to manage my pain & expectations, monitor my activity, stretch, exercise, eat healthy & rest as needed. Most of all, it requires me to be a "person who lives with conditions" and not a victim of those conditions, or a person who identifies by them.

Do you think this is something you would consider taking up with your doctor, in place of finding a sympathetic rheumatologist?
Sue

I think it’s a hit or miss when looking for someone that can effectively treat fibro.
Like you said, many doctors still don’t believe it’s a disease and many just won’t even try.
My kids were lucky to be treated by a pediatric rheumatologist 25 years ago- they were doing a clinical study at the time.
My daughter in Sweden (42) has found one doctor who seems to have read up on it and is trying to get the right med to interfere with the pain signals- she is not very hopeful though.
I had some pediatric patients with fibro when I was still practicing.
I remember one teenager in the early 1980s who had all the symptoms. The term fibromyalgia did not exist then. She was diagnosed with fibrositis, I think. That was the term then.

I have also had very little help from rheumatologists. I have had some success working with a neurologist (mainly for the migraines) but I am now leaning toward pain management specialists. Also, be wary of massage therapists or physical therapists who don’t understand FM. I was in bed for a week after getting triggered by a PT. She didn’t mean to, of course, but I should have been more careful in screening the person I allowed to do my Physical therapy. It’s a rough world out there! Good luck.

Hi,
I go to a neurologist for my fibromyalgia, he is very compassionate, you may want to give a different specialty a try.

Kaiser won’t even refer you to a Rheumatologist for Fibro. I was referred to a neurologist for some of the “symptoms”, but Fibro was not part of the discussion. And when I explained some difficulties I was having, my PCP said “oh, that’s just your Fibro” and it was Literally the end of the discussion.

My GP referred me to a Neuro guy,he sent my MRI spina reports and he just said there was nothing he could do without even talking /seeing me

My new primary/geriatrician said I have no need to see a rheumatologist for my fibro. I too use a pain management doctor and if I ever do PT again, I need to find one very gentle or else it causes more pain!