Pistol Posted February 28, 2018 Report Share Posted February 28, 2018 Hi - I am wondering if anyone here has problems with joint pains. I have noticed that my joint pains ( in all joints, even the one's in my feet ) get much worse when I have a flare - up of my POTS symptoms, such as BP swings, palpitations, syncope, GI issues etc. Even when bedridden I exercise to keep my joints from hurting but when I get bad from POTS they hurt really bad. I was tested for RA several times but do not have that. Does anyone here have problems like that? Quote Link to comment Share on other sites More sharing options...
dancer65 Posted February 28, 2018 Report Share Posted February 28, 2018 Yes I have joint pain all the time also muscle pain not so severe in the summer months but still there , one of those symptoms when I complain about it that is ignored by Dr's . Tried all sorts of remedies , soaking in Epsom salts and using essential oils gives a little relief but my nova sonic machine helps the most for me just another time and energy consuming self help thing to add to the daily list ! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 28, 2018 Report Share Posted February 28, 2018 2 hours ago, Pistol said: I was tested for RA several times but do not have that. Your ANA and the Rheumatoid Factor were both negative or your RF was negative but your ANA was positive? Doctors sometimes split hairs on this. My ANA was positive but nothing else was. I was told I was fine. I have RA, but my bloodwork was negative for years. I was lucky enough to have a doctor who would still make the diagnosis and treat me. It made a world of difference. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 28, 2018 Author Report Share Posted February 28, 2018 @KiminOrlando - all I know is that my RF and ESR were normal, I guess my ANA was as well. I have heard that there is a thing called sero-negative RA, I wonder if it could be that or just POTS? --- It's difficult for people with dysautonomia because we can never be sure if the symptoms we have that seemingly have no proof are caused by POTS or need to be looked into further. Neither do our physicians - apparently! Oh well - I guess we just have to wait until the medical community catches up!!! Until then - this forum is extremely helpful. Thanks! Quote Link to comment Share on other sites More sharing options...
TCP Posted March 1, 2018 Report Share Posted March 1, 2018 I've had joint issues for years and I know now that I have Ehlers-Danlos type 3, neuropathic pain and mast cell issues. All of these cause joint pains. Quote Link to comment Share on other sites More sharing options...
p8d Posted March 1, 2018 Report Share Posted March 1, 2018 I was tested every five or so years for 30+ years before my ANA came up positive. After I developed POTS I was tested 3 times in 18 months and finally that was the positive one that got me to a decent rheumatologist (2nd I saw after developing POTS) who agreed that treatment, even without a positive ANA, is necessary. I started Plaquenil which helps the joint/muscle pain and fatigue somewhat. I still get bad flares but that drug has really been beneficial. Keep requesting tests!! Or find a decent dr that will treat without a positive test. It’s worth it. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 2, 2018 Author Report Share Posted March 2, 2018 Thank you all - I will keep at my PCP and maybe see a rheumatologist ( if I can ). Quote Link to comment Share on other sites More sharing options...
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