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htberg

joint pain part of dysautonomia?

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Went to a rheumatologist for joint paint that I've been having for over a year now.  She said the large joint pain was due to Cipro (which i had been on 6x in 2 years for UTIs and it has a black box warning), but seemed to dismiss the small joint pain (fingers, thumbs, elbows) as dysautonomia.  I was diagnosed with dysautonomia in 2008 and I've never heard any physician tell me about pain associated with it.  The rheumatologist said that nerve pain (shooting, searing) is common with dysautonomia.  I don't have that type of pain for one and i question her diagnosis and if she was just being dismissive.  She further said my pain wasn't that bad if i wasn't taking meds (I've been told by several physicians that i have a high pain tolerance and b/c i can't swallow pills or food b/c of the dysautonomia and have odd scary reactions, i just use alternative things like heat, ice pack, etc,).  She asked me at the end if i wanted meds like Lyrica or wanted to 'suck it up.' 

Curious if others have joint pain and if so what it feels like or what others have been told about pain with dysautonomia.

Thanks!

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I have constant joint pain in both my large and small joints but I am diagnosed with EDS and MCAS in addition to my POTS. The joint pain has been attributed primarily to the EDS by my docs with a side of inflammatory response from the MCAS.

I recently revisited with a new rheumy who is very educated in EDS. I wanted to make sure I didn't have something rheumatoid going on because my pain is at a point that I am having to live on low dose prednisone to function or my joints get to the point of disabling. He explained that they have found chronic tendonitis and bursitis in EDS patients, particularly at the tendon attachments, which are right in the joint capsule.  He said the pain levels from this can rival the pain levels of his patients with lupus and rheumatoid arthritis.

I do find that when my migraine pain is bad or I've had several days of bad POTS symptoms,  my joint pain tends to be flared up. But I don't think that's surprising since this is a weak spot for me and my body gets very run down at these times. I believe my body struggling to maintain itself contributes to additional inflammation at these times. If I eat something that causes a mast cell degranulation, I will also have a flare in my joints. 

Edited by Katybug

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katybug, have you ever asked your doc, while lightly touching say,  your elbow area or outside of ankle, "should this hurt? And they just say , "No"  and dismiss it? I have bursitis in lots of areas too. Interesting what your doc said about pain too. I think some of us (me anyway) don't even KNOW where all we hurt! No wonder were tired, huh?

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Milliesgirl,

Yes. Several doctors have dismissed my pain. They aren't my doctors anymore. I made a decision at one point in this journey that if I wouldn't have accepted a certain level of service from a vendor at my place if business, I shouldn't and wouldn't accept that level of service from my health care providers. Once I started managing my medical needs the way I managed the business I was responsible for, I started receiving much better care. If a doctor doesn't care to provide a high level of service, then I find one in that specialty that does. I'm ok with them saying they don't know but I'm not ok with dismissals. It was quite liberating to make that shift.

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t was diagnosed with POTS 15 yrs ago. I noticed joint pain within a couple of years of my diagnosis. My rheumatologist told me that joint pain was common with POTS and other autoimmune conditions.  I was taking so much Advil that he wrote a prescription for a narcotic pain mad. I didn't want to take it so I continued to search for a solution. Another doctor suggested IgG food testing. The results showed I have a delayed hypersensitivity to asparagus and shrimp, 2 foods I ate all the time. Within 2 weeks of cutting them out of my diet I noticed considerable improvement and within a month I was free of join pain. After 6 months I tried adding them back into my diet and the joint pain was back in 2 days so out they went and I haven't experienced joint pain since.  Many doctors will tell you that a delayed hypersensitivity isn't an allergy. Call it what you like, my joint pain is gone. 

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Thanks.  That's quite interesting.  I might look into IgG testing since I'm not getting answers anywhere else.  I had food allergy testing when I was at Mayo 9 years ago and that was all okay, but previous to that when i was in college (many many years ago) I only had about 3 foods i didn't react to. 

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