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Managing fibromyalgia

Fibromyalgia | Last Active: Sep 9, 2023 | Replies (142)

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Ok, i hope this gets through. I dont know how these posting/socialmedia/forums work or how to tell the top from the bottom...
I was told i have fibrimyalgia in 2015 (although going thru old doc records show i was diagnosted in 2007, with pain going back to 2000) havent been given much help expeciallt since i came to Oregon in AUG to visit & got so sick with gastroenteritis i couldnt return home to work/live in So Cal. Since being here & on medicaid, since i havent been able to work. ive been told so much crap: its all in my head (somatized), its just a 'feeling' & SSA-RSDI will never pay disability to only a fibromyalgia diagnosis because it doesnt have a 'test' to clinically prove i have it & on it goes...
I also have small fiber pheripheral neuropathy & celiac genetic propensity, ( doc calls it:greater than 1 in 10 chance of celiac disease), Digenerative disc disease (which some call NORMAL FOR MY AGE), again CBD is enlarged n ive already had ercp a few years ago to open it up & now its enlarged again. Doc just did a blood test; primary bilary stenosis test.??
Has anyone else had such the run around n negating of your pain?

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Replies to "Ok, i hope this gets through. I dont know how these posting/socialmedia/forums work or how to..."

Hi @dlady, and welcome to Connect.
Congratulations on posting your first message. You posted it to the right group: Autoimmune Diseases. I moved your message to the discussion thread called Managing fibromyalgia so you could meet other Connect members talking about fibromyalgia. To see the complete discussion, including your message, simply click this link https://connect.mayoclinic.org/discussion/hello-everyone-i-am-looking-for-anyone-who-suffers-from-fibromyalgia-and/ Then you can read all the messages from the earliest to the most recent.

I’d also like to introduce you to a few other members who have shared about their experiences in other discussion threads:

- In "Chronic Pain - Let's talk" https://connect.mayoclinic.org/group/pain/ you'll meet @tompet, @briansr and @ladyjane85 talking about fibromyalgia and pain management.
- In "Anyone here dealing with peripheral neuropathy?" https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/ you'll meet @bobsconnect @johnbishop and others

I think you'll find that many people with chronic pain sharing on this forum experience the "run around" you refer to and that pain is largely misunderstood by those who don't experience it, including medical professionals. How are you getting your doctor(s) to listen to you and work with you?

Run around is common. I have had fibro for many, many years, but since<br />
my back issues and surgeries have been worse I cannot bother with it -<br />
I react to all meds. I have been thru 5 surgeries on back and since I<br />
react to meds of many kinds I bear up to 9 pain. I still drive when<br />
needed but am in Independent Care in a facility. I spend much of my<br />
time on the bed in a half recline. I hear you and feel for you. I am<br />
85 and they think I can't have that much pain bec I look so young and<br />
I always fix up to keep my own morale up. Last pain management dr said<br />
there is nothing else they can do for me....Keep yor brain going with<br />
reading, meditation, and whatever you love. My best.<br />

Hi @dlady, if you use Facebook you might consider joining the Our Neuropathy Friends group which has over 3000 members and growing. It's a great support group. One of the posts that may help you was about a lady who helps people navigate through the insurance mess for pain issues. You can read more here: https://www.statnews.com/2016/04/25/insurance-warrior/. Good luck and know that you are not alone. God Bless!

I have a GP for BP and cold meds and see him every four months. I have a<br />
rheumatologist. who I see once a year for osteoarthritis, sarcoidosis,<br />
fibromyalgia, emgus,and other immune problems I have(can't even remember<br />
them all, he gives me soma which is all he can do until I have a flare-up<br />
which works, or helps for fibromyalgia when I get stuck in bed off and on<br />
every month. I'm running a 99.9 today, that's how I know one of them is<br />
slapping me around a bit. No chills just get real hot and eventually take a<br />
Tylenol. These low grade temps can last 2 to 4+ days with my longest being<br />
over 3 months. That's when I take Prednisone if I can drive the 110 mile<br />
round trip. My pain doc is an anesthesiologist who gives me narcs that<br />
don't help much but I take what I can get. He's the cut happy Dr, the best<br />
one I have found in 33 yrs but I'm refusing any more surgeries unless it's<br />
a have to which my last nine have been. His office and him are getting a<br />
bit odd which I don't want to get into now. He flys in surgeons from out of<br />
state and has some on staff.I have an eye dr who got my sarcoidosis<br />
diagnosed, it took 3+ years.I don't even know why i'm typing this much but<br />
I've seen alot of Drs. and these are the best group I've found. It only<br />
took approximately 28 years to find them. These are the kind of Drs you<br />
might need. When they found out I had EMGUS I had a cancer doc who just did<br />
blood work and I got someone else to do that. Google MGUS OR EMGUS and<br />
read, it's very interesting but dangerous. I'm done. I don't know if I<br />
helped you or just confused you. Have to stop now. Thanks. briansr<br />

Thanks Alyse, I'm SO frustrated with these docs! All I've gotten so far is Lyrica n yesterday doc put me on cymbalta, also take Vicodin but there gettin very particular bout that one ( weening my sister OFF because of governmental overreach & she has 3 back fusions!) Denied neuroma/bunion surgery, denied epidural shot for my back. Waiting for physical therapy but I'm kinda thinking they will deny that too.<br />
My doc says there is now way SSA-RSDI will award me disability based on fibro alone, it's just a 'feeling' he says. In pain & so tired of it<br />
Dady<br />
<br />
<br />