Hi, Pete:

Was the methadone the only narcotic able to stop your burning pain? Did you try other narcotics? I am asking these questions because I am interested in knowing why the narcotics I use (Duragesic and MSIR) do not stop the icy cold feeling from running into my veins and arteries. What is the difference between all the narcotics in stopping this icy cold feeling?

You say Cymbalta is an antidepressant. None of my doctors is willing to prescribe any antidepressant for me. Why? No doctor gives me a clear reason. If antidepressants are effective against nerve pain, what would this class of medications do for my icy col feeling which, I think, is not nerve pain? Of course, I could be wrong.

None of my doctors is willing to prescribe diazepan (Valium) for me either. I do not know why. I take clonazepam (Klonopin), but I am not sure if it has the same effects on muscle spasms as Valium. My neurologist, then my primary care physician, prescribed Klonopin for me (with Keppra) to control my seizure disorder (epilepsy). I take one 2 mg tablet of Klonopin daily for my epilepsy, but this dosage is not sufficient to stop the icy cold feeling. Since none of my doctors is specialized in RSD, they would not know what the appropriate dosage would be to stop the icy cold feeling.

Quote: "My migraines are tied to the RSD." So are mine. I take eletriptan (Relpax) 40 mg: one tablet as needed. I am prescribed only 20 tablets per month, even though I can have migraines twice a day. If I, one day, had to have two migraines daily, 20 tablets would not be enough; I would need three times this amount (2 tablets daily X 30 days in a month = 60 tablets).

I have never heard of Thoracic Outlet Syndrome. If it is okay to ask, how does having this syndrome feel like in your body?

I have had RSD since August 25, 2001 (in about two weeks, I will celebrate its 10th birthday with much sadness and despair!) It took doctors less time to diagnose me with RSD; I had to wait about one year. Even though the diagnosis was made, no doctor was willing to manage my RSD, probably because it is such a difficult syndrome to control.

Aaah! If I had the at least U.S. $ 50,000 to try the RSD ketamine coma procedure! When I think my mother is willing to give my healthy and wealthy brother all the money he needs to buy a new, very expensive SUV, even though he and his girlfriend can more than afford it (he earns about U.S. $ 4,000 per month and his girlfriend about U.S. $ 3,000 per month; I barely earn about U.S. $ 1,000 per month), but my mother is not willing to give me a penny for my RSD ketamine coma procedure, it makes me feel sooo sad. It is so unfair! Why help my brother and his girlfriend (when they do not have any financial problems) and not me (when what I earn is not even enough to live a decent life in French Polynesia? Anyway, I am not going to go on and on about this because I will just start crying in despair! I just needed to vent!

I will try to get a check in U.S. dollars from my bank to subscribe to the RSDSA. For Americans living abroad, I am not sure if it is U.S. $ 25 per month or per year. If it was U.S. $ 25 per year, I could afford it if the bank does not demand too much money to obtain a check in U.S. dollars, but if it was U.S. $ 25 per year, there is just no way I could afford it. At the present time, out of the U.S. $ 1,000 I make every month, I have to spend at least U.S. $ 300 just for my medications, maybe more if I need more medications.

Quote: "Keep your chin up, and think of some things that you like to do. Try to do them." I particularly enjoy skydiving, horsebackriding, waterskiing, and rock climbing, which are sports my American friends often invite me to do with them when they come visit me in Tahiti. Otherwise, I love reading. Unfortunately, RSD makes me sooo sleepy when I try to read and I have trouble concentrating.

Quote: "Are there any people in your life that you can spend time with who understand your problem?" Unfortunately, no. No one in my family cares about me and no one among them wants to spend some of their free time with me. I have no friends in Tahiti, only in the U.S. In Tahiti, no one wants to approach me, as if they are afraid I am going to contaminate them with my full body RSD. Even though I explain to them RSD is not a contagious syndrome or disease, they absolutely refuse to believe me. Unfortunately, there is no RSD association in Tahiti.

Quote: "We ALL deserve to have some fun occasionally!" This is so true, but why do people, any people, not want to have any fun with me? I am a human being with a heart and feelings, but they do not seem to be willing to understand it.

Quote: "Be well as you can, and pray for life, not death!" It is so hard to do! I tell myself, as well as God, that dead people do not feel pain or suffer from any syndrome or disease. This is what I am interested in. I feel so lonely that I think even God must not be interested in me!

You are such a kind and loving person. I have no doubt God will bless you for all this! I wish you would be my friend, but dreams hurt too much when they do not become reality.

Thanks for everything, Pete: your kindness, your love, your prayers, and your information.