Kitty,,
for me, the methadone is the one that really does the job! And, it's very inexpensive, it's stops the 'burning pain', (which, for you may be the icy pain). Cymbalta, I was incorrect, is NOT generic yet. It started as an anti depressant, then was found to have some good nerve pain relief too! Diazepam (generic valium) helps stop muscle spasms, headaches, twitches. My migraines are tied to the rsd, and also the Thoracic Outlet syndrome.

I've had rsd and tos since 83, and it took 7 years to get a dx! Hell. But, while it's not curable, it is manageable. Find the right 'cocktail' of meds, rest when you need to, eat good foods, etc.
Here, I pay about 20 dollars/ mos. for methadone and Diazepam. You may want to talk to your doctor about that. I take zanaflex (it's generic , I forget the name) at bedtime.

Also, go to
www.rsdsa.org
there is a load of info there, that you can show to your doctor!
I suggest you join their association. (If you can't afford it, tell them, they'll still help).

Keep your chin up, and think of some things that you like to do. Try to do them. Are there any people in your life that you can spend time with who understand your problem? Seek them out. We ALL deserve to have some fun occasionally!
How long have you had the monster?

We'll talk soon!
Be well as you can, and pray for life, not death!

Pete


asb

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.

Had your thyroid checked? Don't know your age but menopausal symptoms that include your thermostat adjusting, hence hot flashes, but some women get cold bone chilling cold shivers. I have a low body temp97.4 avg, and I get these frequently in the evening, over dressing doesn't help. And this too will pass, and it does within a few hours.

I suffer from Hyperhidrosis (excessive sweating). Though
It is very unpleasant, it CAN BE CONTROLLED
WITH MEDICATIONS.
I see an "Interventional Neurologist". Prior to him I was
Treated by an "Anesthesiologist" --- HE WAS AN
EXPERT IN RSD , but stopped taking my
Insurance.
ANYWAY, I woul look for an Anesthesiologist
Who specializes in RSD. If none within driving
Distance.
Take Care of yourself. In end, you have no one but you

L

Hi, gramE and yiisd:

GramE, my thyroid was never checked. My primary care doctor refused to prescribe this exam for me. I believe it is because he is being harassed by the public health insurance company that covers me, all this because my medical care costs this company a lot of money. It is not my fault; I did not choose to be sick and to have full body RSD. I am not responsible for my health conditions (epilepsy and RSD); the woman who injured me with her car when I was a pedestrian is. Of course, the world is unfair because she got away with it while I have to live with this monster of RSD for the rest of my life.

I am 36 years old; I will be 37 years old in about three months. Maybe I can have early menopause symptoms at my age, I do not know.

Yiisd, if I am not being too indiscreet, may I ask you what medication you take for your hyperhydrosis? Besides having this feeling of icy cold running through my veins and arteries and having this feeling of insects crawling through my veins and arteries, I sometimes sweat a lot, as if I had taken a sweat bath.

My two neurologists want nothing to do with my RSD and its symptoms. They just have no heart. I would like them to walk in my shoes for five minutes so they know how I feel. Unfortunately for me, where I live, no one specializes in RSD so I have to rely on documents (reliable) found on the Internet to educate my doctors, those who are willing to help me with my RSD. I know RSD is not an easy syndrome to deal with, but it is not a reason for any doctor to abandon me. How would they feel if it happened to them or to their loved ones!?

Thanks for your help and for letting me vent.

Just chiming in after reading some posts.
I get bouts of being chilled all over. My wife freaks out as I sit outside in the sun in 90 deg. weather and shake from being cold. All the while being in burning pain. My RSD started in my left wrist but has spread to the my left side of face, chest, kneck and I'm noticing tingling in my left leg from the knee to my toes. The Lyrica I take usually controls the pain good except when this happens....

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.)

Kitty,
So sorry for what you're going through. This 'Monster in us' is very hard to live with. More harder at times than other.
My wife is very supportive. She has trouble understanding things I tell her at times but listens and helps when she can.
Lyrica is the only med I'm taking now but my neurologist suggest that I try narcotics. She has also prescribed anti-depressants which I'm trying to avoid.
Like you, when everybody else is hot and needs the a/c on I'm cold and the cool air bothers my RSD. So I have the air vents closed in my music room and I stay in here a lot.
When I go anywhere that's got a/c it bothers me. But the worst is when I get the chills and feeling like the flue. Also sometimes my head shakes up and down like small convulsions.

Hope for better days...

I get the icy cold thing but for me it's more a distraction than a problem. It just feels like liquid nitrogen in a section of my arm for a while but there's no real pain and very little discomfort. I just ignore it.

I find the creepy crawlies to be far worse. It just fels like a large insect crawling on the region between the RSD and the non-RSD (mostly on the torso). This isn't painful either but it's much more uncomfortable. Again, I try to ignore it.

As a rule I just try to ignore all of it from the burning pain to the screaming paranoia. It can be difficult but I find talking to people or thinking about something else usually will work. The fear wants to take over sometimes. There are just so many symptoms and it seems there's a new one almost every day. I'm afraid a new symptom might not be so manageable or that a few symptoms might hit me at once.

I do try to look at the bright side of things but I guess today is one of those when it's more difficult.

Kool, Kool Kitty.
I'm not feeling well, but I will be back....

Keep your chin up, and head held high!
You are NOT a victim, YOU are a SURVIVOR, and a SUPER PERSON!
This, is what your child needs to know!
After all, they don't do what we say.....
They do, what they SEE!

God Be with you!

Pete


asb