Sonya

Joint pain and burning x 1year

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Anyone else suffering with pain? I am cannot tolerate many medications, since small doses cause significant side effects usually /hypotension/confusion etc.  I was first diagnosed with Idiopathic Adrenergic POTS in 2011 at Cleveland Clinic, in 2013- I had a AVNRT Ablation and my POTS symptoms resolved soon after thank the Lord once I was taken of Beta Blockers and SSI. I recently had POTS reagravation in 2017. I first developed bilateral wrist pain, elbow pain and burning pain into forearms, frequent headaches, frequent infections x 1 year, and now POTS again. Anyone else suffering with pain? The last time I had POTS I had the migraines/headaches, but never joint and burning pain. 

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Yes I have joint and muscle pain on a daily basis the severity varies each day though. When my POTS was at its worst I had burning pain in my feet and hands they would turn bright red and itch it then progressed to my shins , forearms and deltoid area. Since I started midrodine the burning pain has significantly reduced whether it was related to my low BP or not I really can't say.

I hope you can find a treatment that helps 

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I have severe pain in my joints every day as well, blood tests for RA or auto-immune causes have all been negative. I can not take steroids or NSAiDS or even painkillers. I take a good quality  turmeric supplement which helps the most, plus I do exercises for my joints. I do believe this must be related to POTS but it also is possible that it is related to the inactivity due to dysautonomia. ( I am bedridden often ). 

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Yep, mostly joint pain but also muscle aches and occasional really bad GERD-like feeling.  I have been diagnosed with an autoimmune disease but which one is flaring is almost impossible to differentiate.  PT, OT, heat, cold, 3 or 4 supplements to decrease inflammation, gluten and dairy free, low sugar, little processed food and occasional extremely short rounds of prednisone all help a little but often not enough.  I just started OT for my hands and am hopeful that will help somewhat.

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Thank you  for your replies. I am at a loss. I developed bilateral wrist pain over a year ago and very tight forearms I thought it was from my computer use at work. I didn’t have joint pain when my POTS  began back in 2011 only headaches. My joint pain from my wrist then went to my elbows.  I have burning from my elbows into my forearms if I bend my elbow‘s and my hands get very cold and stiff with use. They do not turn blue or red though so the doctor say I don’t have Reynards.  I am now diagnosed with bilateral carpal tunnel, bilateral cubital tunnel, owner neuropathy. Every doctor I see states I need to go to Mayo I’m too complicated.   They state that my complaints don’t match up to my MRI reports. I’ve been tested for every other immune disease in the planet at Mayo clinic now and everything  comes back negative. Except for my ANA is positive. They are telling me it’s muscular skeletal and neuropathic. Possibly even fibromyalgia.  Ive been trying to do physical therapy and occupational therapy and during therapy I ended up herniating my neck. And now I have bursitis in both my hips from trying to do lower body exercises so my pots doesn’t get worse. When I go to see the doctors they dismiss me as if it’s not significant. Even though I cannot use my hands To do anything heavy now for 15 months. I have now had to go off work again. I was working for three years. I am very disheartened I’m not sure where to go.

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A good rheumatologist should diagnose and treat you with some autoimmune disease with a positive ANA and bilateral lower joint pain.  What the diagnosis might be, UCTD, MCTD, fibromyalgia who knows.  Many rheumatologists won’ diagnose with this presentation but good ones will base it off positive ANA and symptoms.  I saw two who dismissed me until my PCP suggested one who did.  There are medications that can help.  

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@p8d - which meds help you with your joint pains?

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@PistolI take generic plaquenil and occasional low doses of prednisone.  The plaquenil helps the fatigue also but I am 99% certain my POTS is autoimmune.  

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