Hi, everybody:

I have RSD in my left knee/leg. For a very, very long time now, I have been feeling something really strange in my whole body. I often feel like something very cold, very icy, runs inside my veins and arteries.

I have no idea what this might be. I wonder if this is linked to my RSD. If the answer is yes, does this mean my RSD has spread to my whole body?

I do not know if I am the only RSD patient with such a strange symptom. Do you have answers to my questions and more information? If you know of any links to online documents mentioning such a strange thing as a symptom of full body RSD, please let me know by posting them so I can educate myself, my boyfriend, my other loved ones, and my doctors.

Thank a lot for your help. It seems to me that, with this monster of RSD, we never stop discovering something new. If only it were positive!

Hi, everybody. I forgot to add that, when I feel something very cold, very icy running through my veins and arteries, I often do not feel good and I start shaking a little. It really feels like someone is pouring something very cold, very icy into my veins and arteries. I haaate this feeling! Aah! If there was a way or another to get rid of this weird feeling! Even wearing several layers of warm clothes and/or wrapping myself tight in a blanket does not help.

It's not beer in there is it? (sorry, bad joke).
It sounds to me as though you're not getting proper pain relief. Have you spoken to your doctor about this? Any unusual perspiration?
I would venture this guess, that it's not actually your vascular system, it's your sympathetic nerves. Which could mean it's gone full body (it usually does, imho).
Please, talk to your doctor about this!

My prayers for you getting proper treatment and resolving this issue!

Pete

asb

Hi, Pete:

Quote: "It's not beer in there is it? (sorry, bad joke)." Just to reassure you, I can swear to you I do not drink, except sometimes some champagne during birthdays, Christmas, and New Year's Eve celebrations. I do not like the French champagne my family buys, because it is not sweet like American champagne.

Quote: "It sounds to me as though you're not getting proper pain relief." I thought I was getting proper pain relief because I usually do not feel much pain on any day of the week. The pain medications I take are:
-Duragesic (fentanyl) 125 mcg: one 100 mcg patch and one 25 mcg patch every 72 hours
-MSIR (morphine sulfate immediate release) 30 mg: one capsule once or twice daily
-Tambocor (flecaïnide extended release) 200 mg: one capsule daily
Sometimes and as needed, I take some Celebrex and some Tylenol.

Quote: "Have you spoken to your doctor about this?" Only my primary care physician is willing to take care of my RSD and its pain by prescribing for me the necessary medications to make this monster pain bearable. The only pain management doctor in my area is unreliable to me: he told me the new type of fentanyl patches, those without a reservoir, can be cut in two, which is not true at all. He would have killed me if I had listened to him. I also did not like his treating me as if my RSD and its pain were in my mind, even though some American Emergency Room doctors, primary care physicians, neurologists, orthopedic surgeons, pain management doctors, and psychiatrists have absolutely no doubt my RSD and its pain are real. I kept the medical records (copies) as proofs of my having RSD and pain.

What kind of doctor or specialist do you think I should speak to? I have no idea who could help me. Even though I am in French Polynesia at the present time, going to the U.S. or Canada or elsewhere is not a problem for me.

Quote: "Any unusual perspiration?" In French Polynesia, where it is often hot, I sometimes perspire, like any person in a hot place. However, perspiration happens rarely.

Quote: "I would venture this guess, that it's not actually your vascular system, it's your sympathetic nerves. Which could mean it's gone full body (it usually does, imho)." I thank you very, very much for telling me the truth; I prefer hearing the truth, even if it is bad news, than hearing lies. I think getting more information on this particular symptom of full body RSD will teach me new things and, in a way, reassure me.

Quote: "My prayers for you getting proper treatment and resolving this issue!" Thank you for your prayer and kind words. You might say I am crazy, but sometimes, I wish I would just die so this syndrome and its pain would permanently go away. It is not that I do not like life; it is just that I am sick and tired of RSD and its pain.

Hi, Pete:

This morning, on August 5, 2011, I again felt something very cold, very icy running through my veins and arteries. I was feeling sooo bad I thought I was going to go crazy. If I did not hate Emergency Rooms so much, I swear I would have called the firefighters to come pick me up with their ambulance. I put on my coat and a thin blanket; this is all I have in my workplace. No effect. Then I took 2,000 mg of Tylenol, 200 mg of Celebrex, 30 mg of MSIR, and 40 mg of Relpax (eletriptan). No effect, at least not yet. Three hours after taking all these medications, I felt the cold and the ice running through my veins and arteries go away. My extremities still felt icy cold, but not the rest of my body.

I just wonder if this icy cold running through my veins and arteries are only a symptom of full body RSD or if it could be a flare-up of my full body RSD. I am asking this question because I do not have this feeling of icy cold every day, even if it happens often enough.

Is there a specific medication for this type of icy cold feeling? Even warm or hot drinks do not do anything, apart from hurting my stomach.

Thanks again. Thanks to your information, I at least do not have to spend my time worrying and wondering about what is wrong with me. This symptom is very scary to me because it is uncontrollable. I just have to wait and suffer. Aah! If I someday have the money, I swear I will try the RSD ketamine coma procedure. I am sick and tired of this syndrome! Thanks for letting me vent.

Hi, everybody:

When one of my doctors asked me for more information on the very cold, very icy "thing" running through my veins and arteries, I was unable to reply. He told me to get more information the next time it happens.

On the morning of August 6, 2011, I again felt something very cold, very icy running through my veins and arteries. I again was feeling sooo bad I thought I was going to go crazy. I noticed, this time, that this icy cold feeling seemed to start running from the center of my body (possibly the spinal cord) through my veins and arteries all the way to my extremities.

Does this new information help tell if it is full body RSD? I find nothing, absolutely nothing, on the Internet about the symptoms of full body RSD. I just find information about symptoms of RSD in an extremity or joint.

Thanks again. Thanks for your information,

My husband has RSD. It started on the upper left side, spread to right, now going to lower body. He has always had the icy cold feeling. His left shoulder is the worst, then his left foot, to a lesser extent, back and right shoulder. He always has 2 shirts on, and a blanket on his left shoulder. now, a blanket around his left foot. 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.
Mary

Kitty,
I don't see how Tylenol can help RSD, at all!
I take, FYI,

Methadone, 50/60 mg/day.
Valium 20/mg/day
Cymbalta/60mg/day
then some zanaflez (all these are generics) when possible and docs do and can give you samples, zanaflez 10/20 mgs per nite to sleep

Imetrex, and the like for Maigraine.

Lidocaine patches for where I have some herniated discs.


I've had this, TOS, discs, TBI, and etc. for 28 years.
It's no joy ride, but, you CAN manage it, and it WILL take you down 2-3 times/week.
Get used to that.

My prayers go to you!

Pete

asb

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.

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!