After two years of my general physician ignoring my concerns about possibly having fibro, I am switching doctors. My sister, grandmother and a cousin all have fibro so I am familiar with the symptoms and how it has affected their lives. In 2005 a doctor told me he thought I developed it after a surgery but it was just an informal discussion and not documented.
For years I’ve dealt with the pain without treatment but it has gotten progressively worse. Moreover, I don’t know if I have really bad fibro fog or possibly some mild cognitive decline, or both. It has gone from moderate to severely affecting my life. I recently lost my job of 10 years because of performance problems related to my cognitive issues. I am 54 and have never been terminated in my life. I fear between the pain and cognitive issues I will not be able to get a job ever again. I know this doctor helped my sister with her fibro diagnosis so I am hopeful he can help get to the bottom of what is going on with me. Does anyone have any advice for me for my first appt? What should I expect?
Hi rjc, welcome! -
you know such a lot already about what fibro means,
did you take 2 years to realize your ex-doc hasn’t helped you, or did you just not act upon it?
Praps you’ve thought about all this already:
Firstly, I wouldn’t put too much pressure on the first appt. & just note if your new doc is one that takes him time for you, listens, thinks, asks & suggests.
Secondly, so the cognitive issues and praps flurry/nervousness don’t hinder you too much, write down what you want to say & ask and don’t worry about using that openly, that will prove the point.
Then I’d concentrate on the central issues: where do you think you might need further diagnoses, what treatments do you consider trying and what differences does he see to what your sister has gone thru?
In or apart from the appt.: Which pain/ache types are your biggest problems? Can you try any treatment already? Seeing as you’ve lost your job to cognitive decline, which then can’t be that mild, you’d obviously want to get a neurologist to check & help with that, before accepting it too quickly as fibro. It does seem as if for some reasons you have waited too long in both areas as with your ex-doc - I’d suggest that it’s of central importance to pinpoint these reason and ‘treat’ those first. If your fear of not being able to get a job again is realistic, then you could turn the fear into an acceptance and starting a new life, with a different kind of happiness. If it is simply a vague possibility then you could turn it into a motivation to do something about it. As you’ve never been terminated before, you obviously have enough competences to work, it’s just you’ve neglected self-care?
I’d be wary of hoping too much that any doc alone can help you - getting to the bottom of things is not really possible as far as fibro is concerned, and it is definitely a long hard slog needing a lot of your own participation. In the past year, my full flare, my 40+ docs and 60+ treatments have ended in finding about 8 treatments which help (6 I do on my own, 2 by my “physiotherapist” = acupressure & cryotherapy), I’ve got my pains pretty much down, my Ache only partly, I’m struggling with trying to work again, but I haven’t got to the ‘bottom’ of things and most definitely no doc has got to the bottom of things, even though all served me as well as they could and about 6 are still supporting me fairly well. Even my acupressurist is not getting to the bottom of things in the sense of knowing how this is working (altho she has/had fibro herself she claims), I often do not feel completely understood by her - but she listens and tries and keeps finding new things (“points to press”) which helps me more than anyone else…
Hope this helps and sort of answers your questions, even though it is diverting them a bit?
I wish you all the luck, tho - when is the appt? Keep us informed, if you like!
Hi, rjc0704! Welcome to the community! I read on your bio that you are the mom of twins! May I ask how old they are? I’m sure that being mom of twins is both rewarding and challenging! I can’t imagine!
First off, I’d like to say I’m so sorry about the loss of your job. That is enough stress, in itself, to throw you into a major fibromyalgia flare!
JayCS had wonderful ideas for you - He’s great at that, btw! I agree that you should write down all of your symptoms and questions for the doctor. I’m sure that, having FMS in your family, you are aware of the pressure points on your body that are an indicator of this condition. But, I also agree with JayCS that, even if it is FMS, you could have other conditions as well. Many of us on this site have also suffered with arthritis, degenerative discs, IBS, depression or anxiety, etc… Any other pains that you have, from another condition, will be remembered and magnified by the fibromyalgia.
Best of luck in your doctor appointment and with the changes you are experiencing in your life. Feel free to post anything or everything that you are feeling during this time. We are all here to listen and give support!
I wrote down a very detailed description of my symptoms and history before I went, because every time I go to the doctor I forget a bunch of stuff. I made two copies and handed one to the doctor while I used the other for reference to describe things in more detail. I think it helped that I had it all written down.
Hey, that’s a nice doc taking your notes! Mine always refused, but I think it was probably too much. But I don’t care since I’ve realized that they can’t help much anyway. I had to try out & find out myself what works and tell the docs what I need. And just use them to check the serious stuff and for what few ideas they have themselves…
Hi there! You’ve gotten excellent advice here. I also take a list with me. It includes a list of all medications, dosage, and any supplements. At the bottom, I list any questions or concerns that I want to discuss. My doctor absolutely loves it. That being said, I just saw mine for the last time today, since he’s retiring. We’ll see if my new one (yet to be determined) will like my approach.
Please let us know how your appointment went. I’m sorry about your job. You’re in a group of people who truly understand how that affects you. Sending you hugs tonight. Let us know how you’re doing!