Hi, jimbo:

I can also get the feeling of icy cold running through my veins and arteries, as well as the feeling of insects crawling through my veins and arteries, when I am under a very hot sun, covered with a thick jacket and blanket. My mother tells me I am not normal: I am hot when she is cold and I am cold when she is hot. I tell her I did not choose to have full body RSD just so I could be "abnormal".

Quote: "The Lyrica I take usually controls the pain good except when this happens..." It is the same thing for me. My fentanyl patches (Duragesic), my morphine capsules (MSIR), and my flecaïnide capsules (Tambocor) usually control my severe chronic pain very well, but these medications unfortunately do nothing for my icy cold feeling and for my insect feeling.

Have you found anything (medication or other) to help you? Does your wife bring you some support? It is not an easy feeling to live with, especially when you have family that do not understand.

As a mother, what can I tell my two-year-old son? That my American anesthesiologist told me I have vasospasms caused by my full body RSD, vasospasms that could give me a heart attack and kill me? That soon he might not have a mother anymore and be an orphan? That he will be raised in an orphanage where he will be only a number or in a family that might not love him? My son had a disease called cystic fibrosis and he had a one heart, two lungs, and two kidneys transplant, so it would be a very demanding job for a family to take care of him because of his medical needs. To those who are wondering, my answer is, no, I am not joking. I would never joke on such serious subjects as RSD, life, death, and my beloved son. What breaks my heart in pieces is when my son tells me: "Mommy, booboo, baby, booboo."

Thanks, jimbo, for sharing your experience and I sincerely hope you will find something to help you because no one deserves to live such a horrible life. (I love life, but not these feelings the RSD in my life gives me.)