Hi, Pete:

You are right; Tylenol does not help all by itself. This is the reason why I usually take one 1,000 mg tablet of Tylenol with one 30 mg capsule of MSIR (morphine sulfate immediate release), hoping to potentiate the effect of MSIR or hoping, at least, to make MSIR work more quickly. Waiting for hours and hours for MSIR to start working is indeed more than annoying!

So, your methadone controls your pain. If I may ask, what are the Valium and Cymbalta used for in RSD?

My doctor refuses to give me any sleep medications. I have no doubt it is because he is being harassed by the public health insurance company's doctors, which is why he might be afraid to prescribe more medications for me. The doctors of this public health insurance company are more worried about saving money on my back (not on theirs) than about helping me as needed. I call these doctors Hell's accountants; they spend their time complaining about how expensive my medical care is. I did not choose to have RSD! I really sincerely wish they would get full body RSD so they know what it is like to walk in my shoes. I have never hated people as much as I hate them, except the woman who injured me, knowing she should not have driven because her Alzheimer's disease reached a stage where she could not drive anymore. However, Madam did not want to lose her freedom of moving; she preferred injuring people. I also wish she would get RSD so she can know what she did to me and walk in my shoes to feel what I feel.

You take Imetrex for your migraines; I take Relpax. Are your migraines linked to RSD, like mine are?

Lidocaine patches are not available where I live. I used to use them in the USA but unfortunately, I am not there anymore because I do not have medical insurance in this country.

Quote: "It's no joy ride, but, you CAN manage it, and it WILL take you down 2-3 times/week. Get used to that." How? How can I do that? In the several years I have tried to do so, I have miserably failed.

Quote: "My prayers go to you!" Thanks for your prayers! I really appreciate them. If only God would just cure me! In my dreams!

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.

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

Hi, Imahotep:

Quote: "I get the icy cold thing but for me it's more a distraction than a problem." Is it because your icy cold feeling is not strong? Mine is sooo strong I feel like I am naked in the North Pole, with liquid nitrogen being poured into my veins and arteries.

Quote: "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." How lucky you are when you say this icy cold feeling does not cause you real pain and is responsible for very little discomfort. I wish I were like you.

Quote: "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." So, like me, you also have this feeling besides the icy cold one. I have absolutely no doubt it is the RSD causing these feelings, not some supposed anxiety or stress. Unfortunately, my feeling of creepy crawlies, also on the torso region and much worse, is sooo strong that it will not let me ignore it.

What the *edit*are these so-called, *edit* doctors waiting to prescribe something to control both these feelings? *edit* I just cannot imagine there are no medications in this world, not even one, to control both these feelings. It is just that these *edit* doctors do not want to prescribe them. They just want to wash their hands off of us. I swear, I will never, ever trust ANY doctor again, especially those doctors in French Polynesia which, BTW, is far from being a paradise for pain patients. Indeed, it is hell for RSD pain patients.

Quote: "It can be difficult but I find talking to people or thinking about something else usually will work." For me, it is impossible. No one wants to talk to me; no one cares about me. Thinking about something else does not work for me because I cannot concentrate long and well enough.

Quote: "The fear wants to take over sometimes." For me, it is just the sadness, despair, *edit*.

Quote: "I do try to look at the bright side of things but I guess today is one of those when it's more difficult." There is no bright side in my life because there is no love in my life.

Hi, Mary:

Did your husband's doctor tell you both what causes this icy cold feeling? Is there a medication he takes to control this feeling?

Even if I put on several shirts and jackets, with a thick blanket to cover my body, I can still feel this icy cold feeling.

Of course, the boss, colleagues, and clients at my workplace look at me in a strange way, as if I am an alien, because it is not supposed to be cold in the tropical island (Tahiti) where I live. I told them it is my RSD, not the weather. Those who do not believe me roll their eyes and grimace; those who believe me do not want anything to do with me, as if what I have will contaminate them.

To some people, it might not seem like a big deal to live with this icy cold feeling but to me, it is. My RSD pain is controlled very well with my various medications (Duragesic, MSIR, Tambocor, Relpax...) but nothing seems to help with this icy cold feeling. I feel sooo depressed and desperate that sometimes I just want to die if it is the only way to stop this symptom.

Quote: "On the days he is able to take showers, he freezes and has cold through his entire body, with chills. He has mentioned this to various doc's, but no one really pays attention." How can a doctor be so uncaring? Does he even have a heart? I wonder!

Thanks for your information. When I finish typing the reply to the next post, I will just take my two-year-old baby boy with me to the restroom and cry silently until I have no more tears left (I am at my workplace). I cannot continue living like this. No, I cannot. What kind of mother can I be to my son since I am always sick with one RSD symptom or another? Thanks for letting me vent.

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.