Hello wswells and welcome to the forum. I am somewhat new here also, but not to the disease. Your question sparked a great interest and I hope I did not rain on your parade. I am just curious, like you, to know the involvement of the internal organs and also some concern for that matter. I believe alot of the medications that I use to treat the disease also have side effects and that is why I asked KS about the internal involvement because I know she does not take medication for her pain.

You have had this a long time, has the pain and limitations progressed? Do you somewhat get use to the pain or is it never ending? I have been diagnosed for six years, I denied it for about four and did not treat it. I had no knowledge and did not want any. I just assumed it was from the obscure fractures that I sustained in 2001 with traction tibial nerve injury. Unfortunately, it did progress rapidly in 2006 and I now have major causalgia. ( I still am denying that one).

I have learned alot here from the members of this forum. They are very supportive and knowledgeable. I just get so confused and scared as to where this disease is going, as I am sure most of us do. This stomach issue is very painful, it has bedridden me for days and it is a severe burning pain. But again, the medications can also cause these side effects and I really do not take a major amount. Thanks for your post, this is how we all communicate, we feed and support one another through another symptom and that is where we learn. Best wishes and I hope you have a pain free day and do share.


Jeanie

P.S. Thanks KS, your information it was very helpful!!