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!!

Jeanie...You my friend are very welcome and I am tickled I could help you...so cute in that you remembered that I am medicine free..sometimes I think either stupid or made of steele!!!

Hugz, Kathy

My daughter was first diagnosed with RSD in 1997 at the age of 10 following a broken wrist. It has become a series of flares with skin lesions covering her entire body that burn, erupt and bleed. IN addition, she has internal involvement as well including the GI tract with Gastro Paresis and lesions in her throat and GI. She has lung involvment and kidney as well, with constant blood in her urine. Looking for a great RSD doc currently as most dont know what to do at this point. Nerve blocks worked in 1997 but they dont know what to do at this point. Dr Schwartzman not scheduling appts until 2012 and we cant wait. Anyone have any suggestions? Glad you are all here

"After having this for so long I just try to blow things off as whatever,I don't even bother telling my family or friends [who are supportive of my situation] about the new adventures of RSD, because I just think it's all just old for them to have to listen to.Do you ever think that it just gets old? Or that they just have listened to it for so long?"

I was just talking about this with my BF who lives in NW Iowa(I live in CA now). I finally told her a few weeks ago about these horrible flares I have been having. And I said if you have noticed that for a long long time I haven't actually talked much about having RSD & pain etc. And she said I know & she had been wondering if it was gone or what was going on. I had told her I finally figured out that there is only just so much to be said & then it gets old, real fast & when nothing new is happening what is the point. Also having good pain control has helped & that I have had for the most part ever since the end of 2005. So I agree, it has to get old to them because it sure as heck gets old for me. And there is only so much to be said about it...............

I had IBS way before I ever had RSD. In fact I have had probs since I was a kid. Constipated all the time & then after gal bladder removal in 1981 loose to diarreha........... Now due to years on pain meds back to constipation. Thank Goodness for Miralax. or it might take dynamite *LOL* I also had heart burn off & on for years & years........I took Nexium for years now have been off of it for 2 yrs almost. I use Tums once in a while is all now.

Debby

My daughter has been diagnosed with abdominal RSD. I recently read with great interest a report written on the rsds association website about organ involvement in RSD. Dr. Philip Getson writes that they have found good results in treating abdominal RSD with Botox. We are having our daughter screened this week to see if she is a candidate. Hope and pray that this may help some of you!!

Steele....definately (LOL). I too was med free until about three years ago and then I mentally just started to break. I am breaking down my meds now, I am going to try to go it alone and see what I can tolerate. If you have any suggestions....feel free to jump in. I do have to have my left foot (good one) fused in April. So I am trying to level off my pain meds now so I can tolerate the post op surgery and the invasion of the RSD. Thanks again for your reply, it helped the confusion....wishing you a pain free day and a great nights sleep.

God Bless All

Jeanie

Jeanie~ Thanks again as "steele" is here...humm..suggestions..I am happy that you are trying to back off on your meds although I am not against the little buggers just my tummy can't take stuff..but if you are having the fusion in April be sure to leave yourself on stuff to cover you for pain then..as far as other suggestions.. well..I think trying to stay positive and not allow the pain to send you away..keep a warm, happy heart , which you already have that part conquesred and also know that our pain is only part of our life..the rest is good stuff..so I think..you are good to go!!!

I pass back a good nights rest and painfree day to you too my friend...

hugz, kathy

Kathy...strong you are...but the size of your heart and sincerity is amazing. Thanks once again for your encouragement you are truly a special lady and you totally deserve an award for Excellent Attitude. I really hate to have this surgery, but I needed it done about 9 years ago and have put it off due to the other foot being such a mess. They are going to put a pump in the donor site, but I cannot handle the pcp thing, so I figure if I wean myself off most of the meds now and deal with pain, I should have a better response to pain medicine for post op. So where are you now with Dr. S, what is the strategy of your treatment? Tanx again your a tweety!!!

Jeanie

Good morning Jeanie~~

I know I sound nutty but we have RSD but thats not all we are..I refuse to let that bugger consume me in fear I will miss other stuff in my life that will give me pleasure..I could miss the fun stuff while focusing my efforts on totally RSD..and the good stuff makes my ticker feel good esp. if I can help someone else feel better and I love that feeling!!

You are very wise in weaning due to having a better response for you pump to take over from your surgery, btw I am really sorry you have to have that done!! I heard the other day from Dr.S's office that because I am not a medicine person..I will repond better to the Ketamine...so I hope the same holds for you with you fusion...I had a pump after my second knee surgery, manual manipulation surgery..it was not too bad having the pump in..it helped with the pain .....

Well myself and Dr. S..I am now addressing coverage, possibilites with my ins. I am having a third appeal plus I have contacted my NYS ins. dept. group to investigate it on my behalf...otherwise..Dr. S has sent me info for my appeal and Dr. S's office have already scheduled clearences to be done in Sept. so they are moving ahead while I babysit the ins...This is a fustrating thing for everyone here...hopefully I can get some good news then share with everyone here to go about it and WIN!!!!

I love hearing from you...enjoy your day, my friend and I pray for an easier day for you!!

Kathy

Hi Debbie, it was good to hear that you too feel that you RSD info. gets old to our families. The problem that I have is that my family wants to know what is happening with my health all the time. I tell them I'm fine, but they can tell when I'm having a bad day. I was kind of regulated for quite a few years until about 2 years ago, that is when the stomach problems began. I had terrible pain in my stomach and I couldn't go to the bathroom[constipation] First I was diagnosed with IBS but the pain was still terrible. Then my blood pressure was just getting higher and higher. The Dr. put me in the hospital and they found erosion in the esophogus and erosion in my intestines. But none of the meds they have tried on me work. With in the last few months I have the rsd discoloration on my skin of my abdomin. Does the Miralax really work? I hate drinking that stuff. My Dr. wants to put me in the hospital anytime I haven't gone to the bathroom for 3 or more days. NO THANKS!
your friend wendy