Hello. I am new to this group. Recently diagnosed at Mayo Clinic (after 3 visits during past 4 months) with Fibromyalgia, Central Sensitization Syndrome, Sjogren's Syndrome, Dysautonomia (Autonomic Dysfunction), Migraines and Joint Hypermobility Syndrome.
Today, a local rheumatologist in South Florida said "I don't support disability for fibromyalgia." After I questioned this, she said "never, ever" not even when combined with the other diagnoses and symptoms. She said going to work is good for Fibromyalgia. Is she even being medically ethical??????? This is all after we discussed the chronic exhaustion, aches and pain, sleep problems, nausea and dizziness, weakness, etc. She said as far as she is concerned she is ready to send her fibro patients back to work the next day, DESPITE their symptoms and REGARDLESS of their job. This sounds insane to me and unethical. How can a board certified Rheum put all Fibro patients in the same box?
This was my first visit with her. I went there to establish myself as a new patient and discuss some questions re medication and treatment for Sjogren's and Fibromyalgia. At the end of our appointment, I asked her to fill out a one-page form for my short-term disability claim which started in late September. I had no problem getting forms filled out in past 4 months by my local Internist, Mayo's Electrophysiology Cardio, and Mayo's Rheum. But this local Rheum is another story. According to the disability claim manager, they want the monthly form to be filled out by a rheumatologist from now on because of the diagnoses.
I am 49, female, have been working full-time since 22 and always worked summers and part-time during H.S. and college. I am not lazy or crazy (although with these new diagnoses came severe anxiety and mild to moderate depression - taking Wellbutrin and Ativan for that since 6 weeks ago).
So now I have to go to another local Rheum as a new patient (another $300) and hope that he/she will not have the same "all in one box" opinion about fibro patients. Before I do, please share your thoughts about what the doctor said.
She's nuts. I don't have fibro and all the other stuff that you have, but I *do* have Sjogren's, and there are plenty of people on my outside Sjogren's list who are on disability. I can't imagine someone lumping all fibro, or all *any* type of patient into one pile. Another doctor sounds in order. :-( -Truri
Unfortunately it IS probably ethical, however it sounds like you will need to find a different rheumatologist. I have Fibro, Depression, Anxiety and a whole lot of other things going on with a weight loss surgery gone bad etc.
It took me over 7 years to find a doctor that was willing to run ALL the blood tests that I required in order to stay healthy due to my vitamin regimen. I saw DOZENS and DOZENS of doctors and they would see the list and decline and I would leave. They acted as IF I was asking them to either pay for it or have the blood drawn from them!
I had the lab list and the vitamin regimen from Doctors in WA State that followed their Weight Loss Surgery patients for life and watched their health decline from the regimen that the MAYO CLINIC was still advising and changed it so that their patients didn't have to almost die from protein starvation or have severe brain damage before supplementing.
I'm sorry that it will cost you more $$ to see another doctor, maybe one of your other doctors can recommend someone for you? While the Mayo Clinic had the "guts" to remove my entire stomach when it was literally killing me, they were horrible with aftercare. Doctors where I live were ready to let me die rather than redo a test they didn't complete or "take me on" as a patient. My own surgeon had already attempted to "cover up" the issues in a surgery I found out later according to surgery records than admit there was a problem.
I literally "fell" into my awesome doctor and her colleagues. It was only because we moved to a different area of the state and I decided to "try" their Internist that I found the best medical care that I have had since long before my stomach was removed in Novemer 2004. It just goes to show that you never know.....
I highly recommend that you really do some research and ask some of your other doctor's for recommendations. It was through my Internist that I found a fantastic Pain Center too.
Keep the faith my friend and remember there are always more doc's out there. I know that you are kind of under the gun right now with the short term disability so I do recommend asking Doctor's that you like, fellow patients that you may connect with in their waiting room, any support groups if you belong etc......
I am living proof that you never know! When I did finally have all my blood tests it did show that my vitamin A was high and my vitamin D was low. I had to lower the dose of my A & D capsules and take more of the vitamin D on its own. I would have never known that if she had not run the whole list.....
Take care and if I can help, feel free to drop me a note!
Go to the NFA website to check their list of recommended rheumy's in your area. The doc list is submitted by Fibro patients. Bottom line, like the above respondents, you've got to find a new doc. Your STD will run out soon, and LTD requires ongoing documentation as well. good luck
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