Fibromyalgia doctor advice?

mrsk0403

Active member
Joined
Jul 25, 2020
Messages
31
Reason
DX FIBRO
Diagnosis
02/2019
Country
US
I see a Rheumatologist for my FM and have been seeing her since 2019. She was the one who diagnosed the FM and has been great... up until a few months ago. I've found that this summer has been especially hard on my FM and I only see my Rheumatologist every 5-6 months. That being said, I have the flexibility to have messages sent to her if something comes up in the meantime. Moving my appt's with her are extremely difficult because she's always booked out months in advance. Having said this.. the messages that I send in between appointments are really important because I don't have other options to see her in between scheduled appointments. The last couple of times I've called to get advice or tell her about something that i'm struggling with i'm ALWAYS referred out to see a PCP. It got to the point that I had another message sent to her, honestly asking "why do I see you if you're referring me out to other Dr's??" I also asked that the message state that i'm so frustrated to the point of finding a new Dr. Any suggestions or advice? I don't understand why I see a Rheumatologist for my FM if when I have problems with my FM she just refers me out to see another Dr. Not even a specialist of sorts... a PCP. I also stated in my messages that the symptoms i'm seeking advice for are direct symptoms of the FM. It makes NO sense to me and i'm extremely frustrated. Any words of advice or encouragement are welcome :)
Thanks.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,047
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
If you are not happy with your doctor, get a new one. That's really your only option because you won't change how this one does things.
 

Dooi

Moderator
Joined
Feb 4, 2013
Messages
170
Reason
DX FIBRO
Diagnosis
06/2012
Country
CA
Very true @sunkacola I've had the similar experiences.

While it may take some time and research finding a doctor that is already compassionate and understanding of Fibromyalgia, that time is much better spent than trying to convince a doctor who is not compassionate and understanding that your suffering is real.
 

Rhyl

Member
Joined
Aug 15, 2020
Messages
18
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
KY
What did she say in response to your message? It could be that she sees herself as just the one who needed to evaluate and diagnose you - and do occasional follow-up - and that now you are diagnosed, she wants your PCP to manage it. Some rheumatologists will follow a patient on a regular basis, but some won't.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
283
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Agreed! But want to add that I've never stayed with one specialist alone and each has contributed a baby-step, for examples see my post:
Doctors that treat fibromyalgia. I wouldn't want to forgo any of them.
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
123
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
I have also struggled in finding a doctor to treat fibromyalgia for me. I have been to a couple of different rheumatologists but they have been really condescending to me and unhelpful. Just my experience but the last one literally said within 3 minutes "You are not exercising enough. You are exercising too much. It's all in your head. You must be depressed, you should go on an antidepressant." And I was seeing him for joint pain, not a mood disorder. While I don't dispute that chronic pain can cause depression it's been really frustrating.

I don't really have a good answer but I think that finding a PCP that can see you regularly for all the little things that come up for FM is a good idea. In the book "The Fibro Manual" the author recommends finding someone to work with regularly, where you can go see them once a month and check in on the progress of different treatment approaches and any new symptoms. She also recommends that you make a double time appointment each time so you have time to really go over all of your concerns if there is a lot going on with you. I like the idea of this approach and I did try it and at first the NP I was working with seems really open to the approach because I asked her ahead of time if we could do this and she was agreeable. But then after a couple of months she seemed to be losing patience with me and the office was refusing to continue to give me double time slots so I got frustrated and quit going. I have been delaying going back because they weren't very nice to me at the end and I have also delayed finding a new PCP. I have moved since then so I think I plan to find a new PCP closer to home even though that office is still only like 20 minutes from me. Anyway, I wish you luck in figuring it out. One thing I will add is that I think the approach of trying to solve things one at a time instead of all at once works best. That book recommends starting with sleep and then going form there because FM and sleep issues are so strongly linked and by solving sleep the FM automatically improves. Luckily my sleep is pretty good and right now I am working chiropractor, a physical therapist, and a nutritionist, all of whom I have worked with independently and not at the request of a doctor. I am also trying to establish counseling which I can do virtually through my insurance. I feel like I should at least find a new PCP and get an annual physical but I delay even doing that because I get really frustrated working with doctors and so I delay. But the PT especially has been really helpful to me in a short time and so I feel pretty good about where I am at, even if there is a long way to go.

Not sure if that is helpful to you but at the very least I do recommend that book. It is written by a doctor and discusses a lot of treatments based on different medications which I am not really interested in but overall it helps to create a roadmap for managing FM.
 
Top