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.

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.

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