Something cold & icy runs inside my veins & arteries
 

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. :( :confused:

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? :mad:

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! :Sigh:

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 :mad: 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. :rolleyes:

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.

Horrible, horrible morning
 

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,

Icy cold
 

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 :Sob: 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. :Sob: :hug:

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. :mad: 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. :mad:

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! :hug:

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. :Sob:

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

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

Hi, everybody:

I feel sooo, sooo sad and desperate, especially since the morning of this day, August 18, 2011. Since this day, one of the most horrible days in my life, all my thoughts turn around one thing: death, death, death, and death. No, I am not happy to be alive. *admin edit*
You must be wondering why I want sooo much to die. I do not remember if I told you what my main RSD problem has been for the past few years. Here it is. I have a feeling of icy cold running through my veins and arteries and I have another feeling of insects crawling through my veins and arteries. For much people, including people with RSD, my problem with these two feelings might not seem like a big deal, compared to the problems they have. However, for me, it is a very, very big deal. These two feelings, which occur practically every day, make my life pure hell, an icy cold one full of insects. These two feelings just drive me crazy. When these two feelings happen, I feel sooo horribly bad that, when I am home, I lie on my bed to cry until my pillow is soaked wet with my tears and I writhe in all directions on my bed.

There is no RSD specialist in French Polynesia. The only pain management doctor in French Polynesia is not knowledgeable about RSD and he is not reliable, kind, compassionate, caring, and understanding: what would you think of a pain management doctor who treats you like your RSD and its pain and other symptoms are in your mind and who tells you the new kind of fentanyl patches without a reservoir can be cut in two? The neurologists in French Polynesia, including my two neurologists, do not want to take care of my RSD problems for reasons they refuse to share with me. My primary care doctors and all other primary care doctors do not know much, if anything, about RSD. So what do I do?

This morning, August 18, 2011, I went to see my cardiologist, after reading on many RSD associations’ and other reliable medical web sites, that my two feelings (icy cold and insects; see description above) can be vasospasms linked to RSD, full body or not. After doing an EKG, the cardiologist dismissed me, telling me these two feelings are not vasospasms but are symptoms caused by anxiety and stress, which is absolutely not true. I do feel anxiety and stress, but they are caused by my having these two feelings of icy cold running through my veins and arteries and of insects crawling through my veins and arteries. The contrary (these two feelings causing anxiety and stress) is completely false. If I do not have vasospasms, caused or not by RSD, then what do I have? I strongly, strongly believe it is not just psychological symptoms.

Result: the cardiologist prescribed nothing to help me with these two feelings of icy cold and insects. He just prescribed anti-anxiety and anti-stress medications for me, which I have already taken these past few years when I had these two feelings of icy cold and insects. I have even taken anti-depressant medications also. All of these medications, anti-anxiety, anti-stress, and anti-depressant, are not effective at all at controlling these two feelings of icy cold and insects. This is proof to me that these two feelings are not caused by anxiety, stress, and depression. Otherwise, these two feelings of icy cold and insects would have been cured or at least controlled by these medications.

So what do I do? No doctors in the United States or elsewhere would prescribe any medications for me to help control the feelings of icy cold running through my veins and arteries and of insects crawling through my veins and arteries. If they did, the pharmacists in French Polynesia told me they would accept their prescriptions.

My other option is to order some medications on the Internet. In this case, I would have to “play doctor” and choose the medications I think will help me most with these two feelings of icy cold and insects. Of course, I am not a doctor or other medical professional who can write prescriptions, but what other choice do I have left? The only one I see is: DEATH! This is a solution I am not ruling out. The five problems I see when ordering medications on the Internet are:
1) Will I really get all the medications I ordered?
2) Will these medications be counterfeit?
3) Will the Internet web sites selling prescription medications without asking for a prescription only take my money without sending me the medications?
4) Will these medications be expensive, much more expensive than in pharmacies, for example?
5) Will the customs in French Polynesia seize the medications? I know no people coming to French Polynesia regularly or from time to time that would be willing to bring the medications ordered on the Internet. If this were the case, these people would have to order the medications I choose themselves and have them sent to an address of their choice so they can pick them up and bring them to me. Of course, I would reimburse them for all the costs incurred.

*admin edit*

Thanks for everything and for letting me vent. I will reply to your individual posts tomorrow.

http://www.wilsonssyndrome.com/wilso...rome-symptoms/

Try here and see if any of it sounds helpful. I had the bug crawling issue but since 5 epidurals that has slowed down a lot, but not the cold. The supplements this dr offers seem to help me with the cold, doesn't totally go away but isn't as frequent. Try taking your temp as they suggest for 30 days and see what the average is. Mine is 97.4. I had some as low as 95.9. I seldom if ever sweat, but heat really bothers me. I've had to find a compromise in dressing and take a jacket everywhere. Avoiding getting too cold is very helpful to me.

I'm so sorry you are suffering this way as I know it is stressful enough but when you add that everyone thinks you are a head case, well, it really complicates things. You are the one who needs to learn and care for yourself, not harm yourself. Try finding an endocrinologist who can help diagnose you maybe.

Don't give up hope. Dr's are human, and it is easier for them to put it back on you in the way of mental illness instead of saying, I don't know what is causing this. I use distraction because many time meds don't work. Maybe during a particular difficult time you can walk intensely or do a puzzle, something that takes total concentration.

don't give up. I'll be praying for you, Kitty.

Very interesting website. Thanks for the info gramE!

Hi kittycappucine

so sorry you are struggling this way

I hope you understand but I had to do some edits to your last post because our guidelines ask that members not make graphic suicidal posts and also to preferably discuss thoughts of suicide on our SOS forum here
http://neurotalk.psychcentral.com/forum29.html

The members there are very caring and understand what you are going through.

I would also like to leave you a link to a website
http://www/metanoia.org/suicide

I do hope you find help to deal with the pain, and hope for Life.

Hi, jimbo:

Thanks for your kind words.

It is great you have a very supportive wife. People with RSD need support, physical as well as emotional. Without this support from family, friends, coworkers, and doctors, it is so much harder to deal with this monster of RSD. You are so lucky to get such support from your wife. I do not have this chance: my parents scream at me so loudly that even the neighbors not living that close can hear their screams.

It seems that lots of people with RSD take Lyrica. I think Lyrica is an anti-convulsant used for RSD neuropathic pain. My neurologists refuse to prescribe Lyrica for me, claiming it is not covered by the public health insurance company. The truth is that I think they refuse to prescribe this medication for me, not because the public health insurance company does not cover it, but because it is a very expensive medication for this company to cover. The doctors always want to save the public health insurance company's money, without worrying about the harms that might happen to a patient not geting Lyrica when needed.

Narcotics, such as fentanyl and morphine, have always been effective against my RSD pain, but unfortunately not against the feeling of icy cold and the feeling of insects I described in previous messages. Anti-anxiety, anti-depressants, and anti-stress medications have always been totally ineffective for me, whether it is against the RSD pain and the feelings of icy cold and insects.

Quote: "She has also prescribed anti-depressants which I'm trying to avoid." You are right to do this; there are not that many RSD people who are helped by this type of medications.

Quote: "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 am not crazy and I am not the only person to feel this way. Has any of your doctors told you this feeling was caused by your being stressed or anxious? This is what my soon-to-be ex-cardiologist told me even though he does not know anything about RSD. He prefers to harm me by prescribing ineffective anti-anxiety and anti-stress medications (which, BTW, do not calm at all my anxiety and stress) rather than prescribing medications that would truly help with these icy cold and insects feelings I have had for a very long time now.

Quote: "When I go anywhere that's got a/c it bothers me." This is also the case with me. Since I am not the only worker in my bureau, I cannot turn off the a/c because the other worker in my bureau would complain of the heat. So of course, I just have to suffer and cry. Lately, I have been bringing my black sunglasses to the job so people do not see I cry or cried.

Quote: "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." This is exactly what I feel also, among other feelings.

Quote: "Hope for better days..." This is the only hope I have left. If I cannot even hope for that, I can at least hope to die. Dead people do not feel pain or icy cold or insects.

Dear Kitty -

I was out of town and apologize for not reading this thread earlier. I am sorry for the suffering you are going through.

For many people, oral Baclofen (up to 50 mg./day) is the best thing going for CNS induced muscle spasms. Have you tried it? It takes a little getting used to, but it's more effective than anything other than cannabis, in my experience. Plus it shouldn't be too expensive.

Another drug, typically prescribed for anxiety, does wonders for my shooting nerve pain, but it works on maybe half the people who use it. In the U.S. it's called Xanax (Alprazolam - a benzodiazepine) and I take a total of 2.5 mg./day with NO psychotrophic effects.

Finally, there's a whole class of meds called calcium channel blockers that are great for vaso-spasms and neurogenic vaso-constriction of any kind, as well as being dirt cheap, the only thing is they can't be taken if you already have abnormally low blood pressure or edema, where they will contribute dramatically to any swelling. I found out the hard way on Norvasc (Amlodipine). But again, if it works, it should be affordable for your health system.

I hope this is helpful. And keep up the hope for better days!

Mike


PS To the best of my my understanding, the only test currently capable of directly measuring small-vessel vaso-spasms/constriction - outside of the brain - is a CT profusion study with contrast, as opposed to an EKG. And one thing a CT profusion study is not, is inexpensive. ;<(

That said, a lot of work has been done through the years with thermal imaging, which is used as an inferential measurement of small vessel blood flow. Whether thermal imaging is clinically available on Tahiti is another question altogether. My guess would be, probably not. And on that point, I refer you to my post # 30, below.

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, Pete:

Quote: "Keep your chin up, and head held high!" It is hard when you keep your chin and head down so no one sees you crying. Crying is all I can do now. I cannot put a gun to these barbarian doctors face to force them to prescribe something for me to help control the feeling of icy cold and the feeling of insects. One of these days, I will just call these doctors Nazi doctors from Hitler's time. After all, do you not remember these doctors enjoyed letting their patients suffer?! I see absolutely no difference between them and those of today.

Quote: "YOU are a SURVIVOR, and a SUPER PERSON! This, is what your child needs to know!" Thanks for these kind words.

The cold
 

Hi kitty, I am pretty new to this disease. I've had it for half a year now, been told by doctors I've had it all the way from back then, but I've just been "officially" diagnosed by a "wcb doctor" today. Today actually is my worse day yet aswell. It's a beautiful hot and sunny summer day, and I am FROZEN to the core. I only have it in my left foot/leg, but I feel the cold all over. I've got the chills right now, and am actually shivering as I write. I don't think that death is a viable option for anyone, I do understand how you feel though. I myself am just coming to grips with what this stupid disease is capable of. I find myself more depressed than EVER, but I'm still managing to look forward to the next day. I'll try anything twice, until I DO find something that works for me. I hope for your sake an mine that tomorrow will be a day that doesn't hold quite intense of a pain as today.

follow up
 

I understand that although French Polynesia became a full overseas collectivity of France in 2004, it is not a Department per se. Nevertheless its citizens are French, with representatives in the National Assembly and able to vote in French presidential elections.

From everything you have said, your level of medical care for CRPS/RSD is markedly below what a resident of a major French city would expect and receive.

Accordingly, have you considered consulting with an attorney to see if it is lawful and/or constitutional to provide two levels of health care to French citizens, depending on where they are situated?

Mike

Hi, gramE:

I clicked on the url you posted and I registered on this web site. The amount of information provided by this web site is amazing and really interesting. Thank you so much for sharing this link with me and the rest of us.

It seems to me that I have a lot of the symptoms of Wilson's Syndrome. I just wonder how to know if these symptoms are caused by RSD or by Wilson's Syndrome, since both syndromes share many, many of the same symptoms. What kind of medical specialist can diagnose Wilson's Syndrome? You mentioned an endocrinologist. Hopefully, there is at least one in French Polynesia.

I will never be able to get epidurals in French Polynesia because these are only given to patients who had surgery to control their post operative pain or to women who are going to give birth. Are there no oral medications to control the symptoms of this syndrome, if this is the syndrome I have?

Both the heat and cold bother me.

Quote: "It is easier for them to put it back on you in the way of mental illness instead of saying, I don't know what is causing this." This is so true.

At the present time, I cannot concentrate enough to use distraction.

Quote: "I use distraction because many time meds don't work. Maybe during a particular difficult time you can walk intensely or do a puzzle, something that takes total concentration." Like reading? I enjoy reading a lot.

Thanks for your prayers, your kind words, and your information.

Kitty,
This is going to be a long reading / learning journey for you.
You may want to print some things, and take them to your doctor.
I think I told you what meds I have settled on after 28 years of this, TOS, TBI, blah blah blah...

Learn, then take action!
I've learned, that probably no one, will take action for you, unless you find a VERY KIND ADVOCATE!
But, try everyone, every organization, from the Red Cross on out.

It's No way to live, BUT, You've got to fight those feelings of suicide!
You'll scare any friends you have! And, it won't help. Keep to your prayers!
You need those, more than those Devilish thoughts!

We're All here for you, so keep us up to date, ok?

Pete

asb

Good description of what is now starting to effect my left leg. Shortly after the icy tingle pain, my leg almost feels like it falls asleep but still hurts and if standing or walking I fall.
I just fell the other day walking into my PT office. Crashed into a bush by the door. That was embarrassing!
This is due to my RSD spreading up my left arm to my neck and head now going south. Excuse my language but the monster sucks....

Hi, Chemar:

I would just like to let you know that, when I typed my suicidal message, it was not to push other users of this forum to kill themselves. I would never do such a thing. In this message, I was just trying to get these desperate and sad feelings out of myself

*admin edit as per NT guidelines*



2) This message was first about the feeling of icy cold running through my veins and arteries and the feeling of insects crawling through my veins and arteries. When I did not get the help I so much needed and was expecting from my doctors, only then did I have thoughts of suicide. If I chose not to post this in the suicide forum, it was because all of my problems were caused by RSD and I felt only RSD patients or caregivers could understand me. If you take a look at the McGill Pain Scale and at other RSD documents and testimonies, you will realize RSD is a special, rare, and very, very painful syndrome: this is why I felt RSD patients and caregivers would better be able to understand me, even if I am not saying the people in the suicide forum are not caring.

Thank you very much for your kindness, for your information, and for the links you provided. *admin edit as per NT guidelines*

Quote: "I do hope you find help to deal with the pain, and hope for Life." I hope so also, because I sincerely think that no one, whether it is me or somebody else, should have to suffer from RSD and from pain. Everyone deserves a life they can enjoy with their loved ones, on this beautiful Earth God gave us.

By the way, I hope it is okay with you that I printed in colors the beautiful and very funny image with the German shepherds and the cat. Just looking at it or thinking about it makes me smile or laugh so hard my ribs ache.

Hi, fmichael:

Are you by any chance Michael Frind? If you are, I will take this opportunity to thank you for all the advice you gave me in another forum to help my two-year-old baby boy. I decided to take a certain time to test your ideas with my treasure and, bingo! they worked. The only thing is that my son refuses to wear a mask, for fear, I think, of being rejected as different by the other children. So I have to ask the parents or other caregivers of the children my son plays with if they are sick (they know why I ask this). He is able to play no more than an hour with the other children, then he wanders around looking for me. If he does not find me, he throws such a terrible tantrum you could hear him from far away. One of the times it happened, I ran to him which, of course, my RSD knee did not appreciate. I convinced my baby to play with the other children by telling him it would make his Mommy very happy to see him have fun with other children, even if she hurts a lot.

Quote: "For many people, oral Baclofen (up to 50 mg./day) is the best thing going for CNS induced muscle spasms. Have you tried it? It takes a little getting used to, but it's more effective than anything other than cannabis, in my experience. Plus it shouldn't be too expensive."

I tried baclofen when I was in the United States. Unfortunately, at that time, I did not have the feeling of icy cold running through my veins and arteries and the feeling of insects crawling through my veins and arteries, so I would not know now if baclofen would work on these two feelings, unless I tried it again. The other problem is that my body absolutely refuses to tolerate baclofen for some reason I do not know. Baclofen gives me very strong nausea and makes me throw up sooo hard that bile comes out, sometimes with traces of blood. An American primary care doctor of mine told me it was because the stomach walls are "torn" (I do not remember the exact word she used), which makes these walls bleed.

Quote: "Another drug, typically prescribed for anxiety, does wonders for my shooting nerve pain, but it works on maybe half the people who use it. In the U.S. it's called Xanax (Alprazolam - a benzodiazepine) and I take a total of 2.5 mg./day with NO psychotrophic effects."

A long time ago, my primary care doctor prescribed Klonopin (clonazepam) for my epilepsy. I still use this medication. I take one 2 mg tablet at night. For my epilepsy, I also take Keppra (levetiracetam): two 500 mg tablets twice daily; the night time dose is taken with Klonopin and, sometimes, MSIR. I did not notice any good effect of Klonopin against my icy cold feeling and against my insect feeling (better known in the U.S. as the "creepy crawlies"). Could it be because the dosage of Klonopin is too low or could it be because Xanax and Klonopin do not have the same effects on the two feelings I have, even though they are both benzodiazepines and belong to the same family of medication, if I am not wrong?

Quote: "Finally, there's a whole class of meds called calcium channel blockers that are great for vaso-spasms and neurogenic vaso-constriction of any kind, as well as being dirt cheap, the only thing is they can't be taken if you already have abnormally low blood pressure or edema, where they will contribute dramatically to any swelling. I found out the hard way on Norvasc (Amlodipine). But again, if it works, it should be affordable for your health system."

I know you are not a doctor, but do you, by any chance, know the differences between calcium channel blockers and beta blockers?

1) Do these two types of medications have the same effects on the two feelings I described?

Since my cardiologist refused to help me on August 18, as I mentioned in my long suicidal post, I decided, on August 20, to give it a try with my primary care doctor, even though I know full well this doctor does not like to prescribe medications for off-label uses. This is why I expected him to dismiss me. I described to my doctor all my symptoms. When he came next to me to take my blood pressure, I even touched his arm to show him that I was not lying and that my hands were not just cold, but icy cold. I almost jumped to the roof with happiness and hope when my doctor prescribed Avlocardyl (propranolol) 40 mg. This is a beta blocker. I have to take, at 9 AM and at 9 PM, 1/2 tablet of Avlocardyl for one week, then next week, starting on August 29, I have to take, at 9 AM and at 9 PM, one full tablet of Avlocardyl. Since I started Avlocardyl, even if I am still at half dosage, the feelings of icy cold and of insects in my veins and arteries seemed to have stopped. I hope my body will tolerate this medication when I go full dosage next week. I would be even more desperate to be obliged to stop Avlocardyl if my body decides not to tolerate it at full dosage. In this case, I could maybe try calcium channel blockers (this is why I asked the question #1 above).

2) Do you know if beta blockers (or calcium channel blockers) are dangerous to take for chronic use, especially with Tambocor (flecaïnide)?

Tambocor is an anti-arrhythmic with oral anesthetic effect when used off-label. I take one 200 mg extended release capsule once daily. Tambocor stopped the paresthesia on the lateral side of the scar of my left knee, who had a revision ACL reconstruction. Before, I had to use Lidoderm (lidocaïne patches 5%), which was not fun because these patches absolutely refuse to stay on my knee, even with tape. Besides that, I was obliged to use my old patches because Lidoderm is not commercialized in France and its territories.

3) Do you know if there are dangerous interactions specifically between Avlocardyl and Tambocor?

It would be too bad for me to have to make a choice between these two medications, which I equally need.

You mentioned the CT profusion study with contrast. I never heard of it, so I will do some research on the Internet to get more information about it. You say this test measures directly small vessel vasospasms and vasoconstrictions outside of the brain.

4) What kind of doctor prescribes and does this test?

5) If this test measures only small vessel vasospasms and vasoconstrictions outside of the brain, what about the large vessels?

6) Can this test measure the small vessel vasospasms and vasoconstrictions outside of the brain when they are occurring? What is there are no small vessel vasospasms and vasoconstrictions while the test is being done? Will the result be a false negative?

I have decided not to worry anymore about the costs of tests and medications in French Polynesia. A lawyer there told me the public health insurance company is obliged to pay, unless they want to get sued by me, all the way to the European Court for Human Rights. I will not hesitate to do this and they know it, which explains why they run away every time I go there. I will always fight for my rights, even if it is not easy when you have a monster like RSD living in your whole body.

I would also be interested in thermal imaging to measure small vessels blood flow. Tests, like those you mentioned, often deal with small vessels. What about large vessels? Does testing them have any importance?

Once, in 2004, I needed a scintigraphy test for my RSD. Since this test is not available in French Polynesia, several doctors (an orthopedic surgeon, a neurologist, a physical medicine & rehabilitation physician, a rheumatologist, and my primary care doctor asked to the public health insurance company's doctors that I be evacuated to France for this test. Of course, the public health insurance company's doctors refused, on the pretext that this test is useless (then why does it exist?) I was sooo angry I told the public health insurance company's doctors that they would spend a LOT of money on my medical care because, whether they like it or not, my RSD was there to stay. Just for my medications, the public health insurance company spends more than U.S. $ 600 per month, every month, for the rest of my life (I am 36, almost 37, years old). They care so little about me that they also refused to pay for my evacuation to France so I could receive lumbar sympathetic nerve blocks. I am convinced it is because I did not get these blocks (it was still not too late) that I now have full body RSD. The chief of nurses, who works at the new and largest hospital in the South Pacific (it is in Tahiti), told me that localized RSD is rare and that full body RSD is even more rare. Now that I know my rights, I will force the public health insurance company to pay for whatever I have the right to. I will always remember their famous: "Pain has never killed anybody!" Even if some people do not believe the scientific study on severe chronic pain being a killer (in another forum), I believe this study with all my strength and all my heart. All my American and all my French doctors believe this study.

Thank you very much, Michael, for all the information you provided in your message.

Hi, theoriginalcool:

If you have had your RSD for six months, can your doctors, working together, find a cure for you? I sincerely hope so, as I know it is not funny to live with this syndrome for months or years, let alone for the rest of your life.

Where is your RSD? Is it localized to one area of your body or do you have full body RSD? What is your treatment to control your RSD pain and other symptoms?

Quote: "Today actually is my worse day yet as well." No kidding, we will all be companions of pain and misery. I am saying it again: "What the h*** are scientists or researchers waiting for to find a permanent cure for RSD?" It seems to me that they are interested in cancer or AIDS, for example, but that they do not care about RSD because there are not enough patients with this syndrome to allow pharmaceutical companies to earn as much money as they would with cancer or AIDS.

Quote: "It's a beautiful hot and sunny summer day, and I am FROZEN to the core." I understand you so, so much. I can stand under the hot sun, with a jacket and thick blanket, and still be FROZEN, just like you.

Quote: "I only have it in my left foot/leg, but I feel the cold all over." Are you saying you have RSD in your left foot/leg? I first had my RSD in my left knee. Then my RSD moved all the way down to the tip of my toes and all the way up to half my thigh. Years later, my RSD finally became full body RSD. I think you should ask your doctors if your RSD is not moving into your whole body, so they can help you better, according to your needs.

Quote: "I am actually shivering as I write." Before I started Avlocardyl (propranolol), a beta blocker, I could shake so bad that, like you, my writing would be unreadable.

You are going to think I am crazy, but I wish I could take RSD in my grip and throw it in a burning fire, so it knows what it does to us before it dies.

Quote: "I hope for your sake an mine that tomorrow will be a day that doesn't hold quite intense of a pain as today." I hope so too!

Hi, Michael:

Quote: "I understand that although French Polynesia became a full overseas collectivity of France in 2004, it is not a Department per se. Nevertheless its citizens are French, with representatives in the National Assembly and able to vote in French presidential elections." You understand right. I wish French Polynesia would become a department, but there are people who do not want this; this is the independantist political party, who wants independance from France. Then misery, especially for the poor people, would set in in
French Pölynesia.

Quote: "From everything you have said, your level of medical care for CRPS/RSD is markedly below what a resident of a major French city would expect and receive." You are right again.

Quote: "Accordingly, have you considered consulting with an attorney to see if it is lawful and/or constitutional to provide two levels of health care to French citizens, depending on where they are situated?" Since 2004, health care is not a competency of France, but of French Polynesia. This was the choice of the i****** who voted for tthe political party that chose political autonomy from France, except for a very few things, like jails. The next time I see a lawyer, I will make sure to ask him the question you just mentioned.

Hi, Pete:

Quote: "You may want to print some things, and take them to your doctor." Doctors do not usually appreciate over-informed patients who come with printouts from the Internet. They do not trust Internet, although many of its web sites are reliable. They do not like to feel challenged, if what the printouts say is different from what they say. They do not want to take the time to read and discuss what is on the printouts... However, I always have some printouts with me, in case I meet a more open doctor who is willing to read and talk about what the printouts say.

Quote: "I've learned, that probably no one, will take action for you, unless you find a VERY KIND ADVOCATE! But, try everyone, every organization, from the Red Cross on out." You are right, I need an advocate but, unfortunately for me, advocates just seem to be impossible for me to find. In French Polynesia, there is not even one patient advocate organization, including the Red Cross.

Quote: "It's No way to live, BUT, You've got to fight those feelings of suicide!" If my body decides not to tolerate the full and effective dosage of the beta blocker (Avlocardyl - propranolol) I need to control the feelings of icy cold and of insects and if the same thing happens with calcium channel blockers, the questions concerning what you said would be: "Who will win the fight of the feelings of suicide? Me or these feelings?" and "What about the feelings of icy cold and insects if my body refuses to tolerate beta blockers or calcium channel blockers at their full and effective dosage?" Hopefully, I should find out some time next week.

Quote: "You'll scare any friends you have! And, it won't help." True friends should be there in good as well as in bad times; if they flee in bad times, then they are not true friends.

Quote: "Keep to your prayers!" I have prayed God to cure me for almost ten years and nothing happened. Maybe God is fleeing me also. *admin edit*

Quote: "You need those, more than those Devilish thoughts!" You are right, but it is difficult when RSD is so, so much stronger than me.

Quote: "We're All here for you." You are all good friends.

Thanks for your kind words.

Just some food for thought.

When things get tough for me I remind myself that although I have CRPS I have a lot to do with how much I do or do not suffer.

I also remind myself of my 43 year old neighbor who recently died of cancer leaving two small children behind. She would have gladly changed places with you or me.

Please think about seeking psychiatric help to help you develop coping mechanisms. We can't control our pain but we do have control over how we react to it and cope with it.

Hope there are better days ahead for you!

Hi, ballerina:

Quote: "When things get tough for me I remind myself that although I have CRPS I have a lot to do with how much I do or do not suffer." Are you saying that you play a role in how much pain you have or do not have? Are you saying that you could feel less pain if you wanted?

I am sure your neighbor wished she were alive and happy with her children. I understand there are cases much, much worse than mine but I also understand there are cases much, much better than mine. There are even many, many more cases of healthy people. I wish I were healthy and did not have RSD. I know we all do wish we were healthy and did not have RSD.

Quote: "Please think about seeking psychiatric help to help you develop coping mechanisms. We can't control our pain but we do have control over how we react to it and cope with it." The only problem is that I have trouble going over the hatred I feel for shrinks when they treated me like a nut case in the past. Even worse, they treated me like a druggie even though I told them I needed my narcotics to control my RSD pain. To top it off, they did not believe I have RSD and pretended it was in my mind even though I had proof of the contrary. The only psychiatrists I trust are in the U.S., not in French Polynesia, where I am.

Thanks for your advice and kind words.