I've had FMS long enough and done enough of my own research to know that someone who suffers from FMS needs to have, at a minimum, in their "doctor arsenal" is a Rheumatologist We'll in the wonderful hospital system (sarcasm), I've been referred to the Rheumatology department 3 times that I can remember in the last 5 years and each time they send me back to my primary care physician because "they don't specialize in Fibromyalgia". My PCP is at a loss because he is not an expert when it comes to FMS. He said he will do the best he can, but apologized that he can't do more. I was also sent to see a doctor in Physiatry, boy that was a joke! I only had 4 appointments with her and they were the biggest waste of time. I almost lost my job over them. EVERY single one I had to wait at least 90 minutes past my appt time ( I was either the 1st or 2nd of the day) in the waiting room, then at least 30 minutes in the room before the idiot Dr finally comes in for 5-10 minutes. My 2nd appt was the ONLY one she did anything to try to help me and all she did was 2 trigger pt injections which did nothing except cause my back to go into severe spasms for 4 days. The other 3 appts all she did was as for an update on my pain then tell me to reschedule for the next month. For the 5th appt, after waiting 1 hr and 45 mins past my appt time, I got up bawling my eyes out and told them to just forget it since she doesn't give a crap neither do I and I walked out. Now I'm expected to go back to her because she is the only "Fibro expert" in the health system that has monopolized all of central PA. What do I do? How do I begin to fight this? My PCP is a good Dr., but that's like having a great car mechanic build your new house. I am soooooo sorry I went on so long, but I really need some advice on this. I have no clue where to turn on this. Thank you all so very much! God bless you!!!
Hi, I don't know that you can make a doctor step up.
I found that I kept my sanity by going to different doctors until I got the right fit for me. It's sort of like finding Mr. or Mrs. Right. ;)
Good luck and feel better.
L.
I really feel your pain! Been through 1 primary care doctor who diagnosed me but never told me he figured I had FMS and only kept treating my migraines and I was sent to 2 different neurologists who were awful, one rheumatologist this summer who told me all he could do was diagnose me but not treat me, but ruled out lupus, Lymes, etc. Then got referred to a pain management doc via my TMJ doc, who is supposed to “treat” FMS but I also got the wait for her for hours to have her see me for 5 minutes and not answer any questions. It took her 6 weeks to fill out my FMLA papers for work to reduce my schedule (which was her recommendation in the first place)! I fired her after I got the paperwork, went back to the sleep doctor with no success, and after talking to my new PCP and the pain management doc who has helped me with my back (she wishes she could help more, but specializes in more surgical procedures: injections, RFA, nerve blocks etc). She referred me to another pain management doctor at the hospital who also practices holistic medicine and I am really hoping this is the one.
I have found that it is my responsibility to hire the person who is going to work for ME and get me as pain free and get me sleeping - and I’ll keep searching if I have to. We know our body better than them and its just a matter of expressing it to them, which can be really hard when you’re in pain and have a head full of fog! There has to be someone else - keep looking. Google rheumatologists, pain management and Fibromyalgua in your area and call and quiz the receptionists. They will tell you how the doctors treat FMS patients. When I called rheumy office they told me outright that they would just send me to a pain management doctor.
That seems to be one of our biggest hurdles is finding the “right” doctor. Some have been through many and taken years (not to discourage you) but don’t give up. I’ve had FMS since 1990 and am still seeking my miracle worker. I know and pray that I’ll find someone to help me through this and I know you will too. I’ve had many days where I say I never want to step foot in another doctors office but I get up the next day in lots of pain and I’m back on my mission. I have taken some great advice from others on this site by eating differently and taking supplements that are keeping me fighting. God bless you in your journey! Let us know how things are going. ~ Sandi
Sandi, that is wonderful advice you just gave her. I agree with you. I have been very fortunate with my doctors. Although the last time I was at the rheumatologist she was a little rude. She always asks me what one thing hurts the most. I tell her I have widespread pain through out my body but yes my hips,back,heels of my feet and neck. She looked at me and I could sense she wanted to roll her eyes. I currently get all my meds from my PC and neurologist so she really doesn’t do anything for me anyway. So If she is like that again, I will have no problem mentioning this to her.
Leanne L
Good for you Leanne. I never used to be so bold in my reactions to doctors until I asked for my PCP records since 1989. What a rude awakening! He made me sound like an anxious depressed person, when I really wasn’t at the time. Was I a tad depressed when I came to him for a severe migraine because it had been going on for 4 days? Maybe. But to see it in writing and he never asked me about other symptoms, etc. and taking advice from others on here who have been through the ringer - they gave me the strength. Why should I pay a doctor $234 for a 5 minute visit where she doesn’t do a thing! Or $174 for me to work with a physical therapist in a pool - which the water was so cold the 3 of us only managed to walk back and forth 3 times because we were shivering do much! Utterly ridiculous. I felt so much better letting them know that I thought we were being taken advantage of at our expense.
We are very important patients and doctors need to realize that they could have very rewarding careers if they became compassionate, knowledgeable physicians if they read up and studied FMS. Now to get off my tiny soapbox and go grocery shopping - yuk!
You hire your doctors and you can fire your doctors. I would keep looking until you find someone you're happy with.
Maybe call Rheumatology offices in your area (or even a little outside of your area. Isn't there a University hospital in Pittsburgh?) and ask the staff if the doctors there treat fibro? Not all Rheums do, but I think many do.
My internist is extremely familiar with it and has treated many people over the years. There's another option. If you can't find a Rheum and your PCP knows nothing about it, try calling some internists in your area.
I have found that the single most important thing you can do for yourself is find a good doctor who listens and can help you. There's no point in seeing a doctor for fibro who knows nothing about fibro or refuses to treat it.