htberg Posted September 17, 2015 Report Share Posted September 17, 2015 I was diagnosed with dysautonomia in 2008. Also have small distal fiber neuropathy, hypothyroidism, asthma, factor five leiden, endometriosis, etc. etc. etc. About 10 weeks ago I thought i injured my shoulder exercising. Then I thought i hurt my foot (dog stepped on it). Then nearly every few days another joint (or maybe bone or muscle, not sure) kicked in (some other ones improving some not) and I'm now up to 11 sore joints. My primary took blood and said it is not rheumatoid arthritis. There is no obvious swelling and they are not the pressure points for fibromyalgia. I also got off my thyroid meds abruptly b/c i suddenly turned hyperthyroid and usually you are never supposed to go off them once you start so i blamed it on that. Then i thought it might be a reaction to Cipro b/c i was on that for a UTI twice in the last six months and at the time the initial pain started. Just wondering if this could just be part of a dysautonomia flare of some sort? The doctors once again don't seem to feel that exploring this further for a cause is worth it and just want to prescribe steroids and only b/c its to the point where i am actually having to hold my arm w/my opposite hand when moving, walking, etc. B/c its 11 joints i don't think its tendinitis unless of course that darn Cipro caused it--it does have a black box warning for tendon ruptures. I'm also concerned that taking the steroids is only going to mask the pain and not really treat the underlying issue. Any suggestions or ideas? Quote Link to comment Share on other sites More sharing options...
dancer65 Posted September 17, 2015 Report Share Posted September 17, 2015 I have this problem too. I have hip bursitis , tendonosis, inflamed insertion of oblique muscle, damaged shoulder tendon and my all my muscle hurt constantly. I was told there was nothing really that would help and it was part of POTS they didn't understand. I have found relief from using infra red lamp especially for the coat hanger pain and headaches which seems to come from either my sinus or from my base of the skull. They can be bought quite reasonably online.Of course I would check with your Dr this is ok to use. Quote Link to comment Share on other sites More sharing options...
Nymph Posted September 18, 2015 Report Share Posted September 18, 2015 Since you have had joint pain in multiple joints for more than 6 weeks, I think it would be helpful if you'd see a rheumatologist. They are the experts at diagnosing things. I think a blood test cannot rule out RA. There are also lots of other things that can cause these problems. It is worth getting an expert opinion and full work-up as soon as possible because some conditions can cause permanent damage, and many have a better course if they're treated early. You're conditions seem to line up with many autoimmune diseases. Diagnosis can often take some time, but a good rheumatologist will initiate appropriate treatment even if he does not know which one it is exactly yet. Good luck! Quote Link to comment Share on other sites More sharing options...
htberg Posted September 24, 2015 Author Report Share Posted September 24, 2015 I agree about seeing a rheumatologist and unfortunately my primary doesn't think i need to see one and hence, won't make the referral. I've asked my urologist to make the referral (b/c she's the one that prescribed the Cipro) and she won't make the referral either, saying its my primary's responsibility. I've called some rheumatologists on my own to no avail, they all want a direct referral. I have read that even if it is the Cipro, that can cause permanent damage so I am worried about this. I am seeing my endocrinologist next week...maybe she'll be willing to refer me. Very frustrating. On a positive note, things are improving with Advil and not stressing the joints--not exercising or doing anything else to stress them. Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 24, 2015 Report Share Posted September 24, 2015 I have had tendonitis from Levaquin, an antibiotic in the same class as Cipro. The pain is very specific and runs along the tendons. It feels different than joint pain.How hard have you pushed your PCP for a referral? Have you said, "I'm in pain and if you don't have a plan as to why and how to treat it, I would like a referral to the appropriate specialist for diagnosis and treatment because I'm not going to live this way." I had to really put it out there with my doc in the beginning and point out that if he didn't have the answer, he needed to refer me to someone who might. Quote Link to comment Share on other sites More sharing options...
fitnesskelly Posted September 24, 2015 Report Share Posted September 24, 2015 Do you take Vitamin C? I was taking some higher dose Vitamin C to help my adrenals and stopped because it was theorized that I might have hemochromatosis. Within days of stopping Vitamin C, most of my joint pain cleared. More is not better when it comes to Vitamin C.Regarding the cipro, I was told if you get floxed from Cipro, you will know it because it's the most painful pain ever. Quote Link to comment Share on other sites More sharing options...
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