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Fibromyalgia -- Need help on how to handle severe pain

Fibromyalgia | Last Active: Oct 29, 2023 | Replies (156)

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@delia74

@ripley: I re-read your original post, and I was struck that you say your rheumatologist diagnosed your fibromyalgia, but then sent you to your GP...in my estimation that rheumatologist FAILED.
A rheumatologist diagnosed me, prescribed medications, etc., and along the 30 yrs or so that I've had the misfortune of dealing with fibromyalgia, it has been rheumatologists who have monitored it along with the medication(s).
You need to concentrate on locating a QUALIFIED rheumatologist to monitor your fibromyalgia. If you belong to the site Nextdoor, write a post asking members within your area for names (and contact info, of course) of RECOMMENDED rheumatologists, particularly if members are being treated for fibromyalgia. This does not violate privacy guidelines. I've belonged to Nextdoor for about 3 yrs now, and have obtained leads which I then vet and decide whether or not to contact the recommended doctor(s). I did that recently, asking for recommended private practice neurologists who are certified to do nerve conduction studies (not all neurologists are), and also private practice podiatrists. I invested the time and energy into researching the names given to me and now have upcoming appointments with doctors that have backgrounds and credentials within what I require to address specific needs. You can do likewise if you want recommended doctors from within whatever medical group you belong to (in the event that your insurance doesn't provide the freedom to see "outside" doctors). JUST MAKE SURE TO ALSO VERIFY WITH YOUR INSURANCE THAT the chosen doctors are IN-NETWORK, and thus avoid unexpected (and unwanted!) surprise costs.

But BOTTOM LINE: You need a QUALIFIED rheumatologist who is educated in all the aspects of fibromyalgia. Mine is, and she knows the intricate and most definite contributing factors of other pain producing disorders that I have, such as polymalgia rheumatica and a host of others. She has offered medications but respects that I am highly sensitive to whatever unfortunate side effects/complications they can cause, so she does not "push" when I decline. She is fairly young, around 40'ish, which to me is a godsend because she won't be retiring anytime soon! TWO absolutely wonderful former rheumatologists retired within last 12 yrs, which devastated both my husband and I (we see the same doctor, he for osteoarthritic and rheumatic issues).

I EMPHASIZE: Search for and establish a relationship with a knowledgeable, compassionate rheumatologist who respects the fact that fibromyalgia is REAL.
Please let me know how you make out on this journey. If you are at all interested, I'll share with you what has/hasn't worked for me, and aim to answer questions. What I used to tell our children and my students: No question is ever a dumb one if it's meaningful to you.

For now, invest in a medium-large heating pad. I love using it, and it really helps with the leg pain, and all areas that benefit from the warmth. Our daughter gifted us a model that covers the base of head/shoulders/back, but I use it wherever I need it. Has 4 heat levels: Warm, Low, Medium, High. Check out Sunbeam, has this info on the label: P.N. 12899-Y.
I'm going to hit REPLY and hope that this will actually post....the last two that I tried sending to you have not...If it doesn't work, I'll try again. I copied what I've written just in case, so the info doesn't just go into cyber-limbo. 🙂

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Replies to "@ripley: I re-read your original post, and I was struck that you say your rheumatologist diagnosed..."

Are you taking any of the drugs for fibro, like Cymbalta or Lyrica? I would like to avoid those so am trying medical marijuana--still trying to find a dose than helps. I have called many rheumatologists in my state and haven't found one yet that helps treat fibro, and not just diagnose. But I'll keep trying. (As far as your Dr, you don't happen to live in MN, do you?)
Have you ever gone to a "functional" doctor? They try to treat naturally w/o drugs. Very long wait time here to see one, I couldn't get in earlier than January 2024. Thanks.