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.