NFA QuestionsCategory: QuestionsDoctors after diagnosis
Daya Johnson asked 3 years ago

What doctors specializes in FM? I have been referred to Rheumatology after trying two approved medications that had severe side effects for me. In the process of making my appointment with them I was informed that Rheumatology will only see me one time to make a treatment plan then send me back to my primary, due to their office not working with FM patients. I have gained 20 pounds and would love to know, are Nutritionist trained about best eating practices for FM patients? I have also been referred to Physical Therapy, are they trained to be able to understand FM patient needs? As a FM community, are Holistic approches desired among patients more than Western medicine? I’m really frustrated with everything about FM.

2 Answers
Deana Barry answered 3 years ago

I don’t have an answer to your question, but am finding myself in a similar situation only NO Rheumatologist will see me? I was actually diagnosed in 2016 by a Rheumatologist and never really sought treatment as I was dealing with a lower back issue at the time and that was my main pain generator. I got that fixed and was pretty good until mid 2019 and all heck broke out. My primary says it’s just FM and isn’t crazy about treating with meds that are approved for FM as she states the side affects are far worse than the benefits? I did revisit her this week and she prescribed Amitriptyline 10 mg to help with sleep. I went to PT for 7 months for my back issues and have a whole notebook of exercises that are helpful (when I do them) but they don’t last throughout the day or even night when doing them before bed. I’m just as frustrated as you and want some relief. If I’m being completely honest, I’m not a firm believer in the FM diagnosis!

Johnna Worster answered 3 years ago

I go to a pain management doctor.  I have had fibromyalgia since I was 19 and was diagnosed with it when it was called “fibrocitis.” I was 23 years old and had 3 children, 2 in diapers and 1 in kindergarten.  It was very difficult to get any doctor to listen to me. I remember watching an episode of “The Golden Girls,” where Bea Arthur was suffering from chronic fatigue syndrome.  She was so happy that her illness finally had a name. That’s how I felt when I was finally diagnosed after suffering for 4 years and being told that there was nothing wrong with me.  I have had doctors tell me that they don’t “believe” in fibromyalgia,  well BS!!!!! I know that I have had it for the past 40 years, I raised a family, worked full time, and at age 47 had to give up working full time because my body just couldn’t do it anymore. I slept my whole 2 days off just trying to recuperate from the work week. I had no life other than work. It was horrible.  I finally had to give up working completely in September of 2018 because even just doing computer work was too much. My mind suffered so much from “fibro-fog.”Pain management may be your answer but find someone that will listen to you. You know your body better than anyone else.