scarfgirl Posted July 9, 2007 Report Share Posted July 9, 2007 I know a lot of us experience joint pain or something similar, but I'm curious to know if anyone has any clue why chronic pain develops in some of us. I'll go through periods where every single joint in my body is just screaming. My doctor hasn't a clue why I'm hurting so bad (it now surpasses dizziness as my biggest complaint), and I haven't read anything that suggests a reason either.Anybody know what causes their pain? or at least have an idea? Quote Link to comment Share on other sites More sharing options...
mkoven Posted July 9, 2007 Report Share Posted July 9, 2007 This may not be relevant for you, but it seems many folks with pots also have ehlers-danlos syndrome-- a collagen defect that affects tissues throughout th body-- and joints are the big one. Are you overly flexible/hypermobile? WWW.ednf.org has good info.All my joints are on the loose side and are easily injured. Of course, you should work with your doctor for the other more common (in the general population) causes of joint pain. But eds is underdiagnosed and doctors often look for extremes. I am not a contortionist, but still have too much movement in my joints, and they often slip out of place, clink/clank, hurt, etc. In the general population, I've heard that eds is 1 in 5000. Quote Link to comment Share on other sites More sharing options...
flop Posted July 10, 2007 Report Share Posted July 10, 2007 There certainly do seem to be a lot of folk on here with both POTS and EDS (type III / hypermobility mostly). Another condition that can cause chronic widspread pain is Fibromyalgia - it might be worth doing a search for that too.Flop Quote Link to comment Share on other sites More sharing options...
Sunfish Posted July 10, 2007 Report Share Posted July 10, 2007 one other possibility that MAY apply for some is a constellation of autoimmune disorders. often those with an autoimmune disorder have more than one so in theory someone could have dysautonomia with an autoimmune etiology as well as another autoimmune disorder causing pain. just conjecture though on my part...i don't have anything to specifically back my theory up... melissa Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted July 10, 2007 Report Share Posted July 10, 2007 uhm i dont have any answers why as you have joint pain.. but i wanted to throw out a i cant relate to waht you are going thru!!i suffer from horrible joint pain as well.. at times i can barely bend my finger or toes.. or move my wrists or ankles...it unknown why im like this only that i am..wanted to also suggest a few thing to help...1. i know that when joint pain is really bad that they last thing that you want to do is move the sore puppies.. but try and keep your joints moving...it hurts.. but not mvoing will make the pain and stuff worse...also aspecreme.. to rub in the jopint big or little can help... uh ive found that TYlenol arthiritus does helptake the edge off.. i have not be dx w/ arthrisitus.. but these pills work.. you can get a bottle of tylenol arthritus at walmart or a drug store for about 11-12$ a bottle.. it is in my opion worth every penny if it gives relief....hope you feel better soonhugs Quote Link to comment Share on other sites More sharing options...
briarrose Posted July 11, 2007 Report Share Posted July 11, 2007 Ehlers-Danlos, Connective tissue disorder, Auto Immune Dx, Over-active Neurotransmitters, etc. There can be many different reasons. Joint pain was one of my earliest symptoms and most painful complaints. Dr. Grubb started me on Neurontin, at the time it was the first relief I had in 10 years of joint pain. Quote Link to comment Share on other sites More sharing options...
scarfgirl Posted July 12, 2007 Author Report Share Posted July 12, 2007 Thanks for all the input. So basically, the cause of the pain is as poorly understood as everything else. Makes sense. I first panicked and thought rheumatoid arthritis (it runs in the family) but tests for that are negative. So now I'm just trying to figure out ways to cope with the pain w/o resorting to meds that'll dope me up too much. Warm baths, yoga, and I'm gonna try some strength training focusing on my knees and elbow joints. I was wondering if maybe all this inactivity from when I was more severely ill has made my joints weak and unable to handle daily activities. I am hypermobile (no other symptoms that would make me suspect ED, just the "normal" freakish flexibility that comes with being tall and skinny) so it would make sense that my joints might wear out a bit quick. Anybody had any succes with using strength training for management of joint pain? Quote Link to comment Share on other sites More sharing options...
scarfgirl Posted July 12, 2007 Author Report Share Posted July 12, 2007 Oh and Briar Rose, tell me more about neurontin and what it did for you. Thanks again. Quote Link to comment Share on other sites More sharing options...
mkoven Posted July 12, 2007 Report Share Posted July 12, 2007 If you are hypermobile, and have pots, it would make sense to try to get a diagnosis to rule out eds. (There are plenty of tall, thin people who are not flexible). Seeing a doctor to figure out or eliminate causes of the pain would be good, as the treatments differ. At the very least, hypermobile joints are more vulnerable than "normal" joints. I've worked with physical therapists to find a routine that strengthens without stressing. It's important to find someone who does not focus on range of motion as much as control and strength. Quote Link to comment Share on other sites More sharing options...
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