my health problems all started when in 01 i went to the er for kidney stones and ended up with crps caused from an iv. since then i have had a complete hysterectomy had half my thyroid removed and told i didnt need any meds for either of these two things now i also have cfs and fibro as well as ankylosing spondilytus which is a form of arthritus is which yoor spine fuses together and on top of all of these things i have parrromberg syndrome which means that for the past four years not only am i stuggling from the horrible chronic pain from crps and fibro and having all the things from weight gain fliud retention and chronic fatigue my face on the left side has caved in or atrophied so it has been devastating and when you not only have one rare syndrome in the crps but to add to it all the rest getting help has been a nightmare i know exactly what michelle is talking about i have had to diagnose myself on many of times because my blood work always comes back normal and that seems to be a trend with people with crps no matter what other medical problems we have it takes us years to get a diagnoses i have been fighting for four years about my face and my thyroid and hormone levels to only find out now they should have never taken out half of my thyroid but just put me on medicine and even after removing my thyroid still said my levels where fine the other side is now being effected i also have low cortisol and low blood sugar and no hormones of any kind so i know what it is like to have all of those problems but i am also in not only one type of chronic pain but three and crps is the worse known as of today so i get to add that on top of my face and things are a little overwhelming since my faceis so rare it is hard to find a doctor who even can help with the other problems it causes like loss of eyesight or seisures and ymj which i also have i understand michelle wanting to help others i do as well i have started a support group here in oklahoma for people with crps/rsd and fibro sice most of us with crps/rsd end up with fibro as well i have found out alot like the link between thyroid hormones and cfs and fibro have a big connection so if i can help anyone with one of the things i have i would love to my site is oklahomarsdcrpssupport.com if i can help plese contact me that is why we are here to help one another since most of these things happen to women twice as much as men
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Hi jonestra - You've certainly had your share of health concerns. Thanks so much for sharing your story and coming to our site.
Your support site for those with CRPS looks like it's going to be a valuable service. Borrowing from your site, I see that Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is a chronic neurological syndrome characterized by:
severe burning pain.
pathological changes in bone and skin.
excessive sweating.
tissue swelling.
extreme sensitivity to touch.
We wish you the best in your own journey with your personal medical conditions, and hope that you're successful in helping others get the support they need. There is a lot of power in support groups!
Take care,
August 19, 2010 - 6:09pmPat
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PAT THANKS SO MUCH I AM GREATFUL TO HAVE FOUND THIS SITE I KNOW THIS WILL MAKE A DIFFERENCE IN PEOPLES LIVES
August 20, 2010 - 8:34amThis Comment