Hi; I have RSD in my left knee/leg. I have the feeling of icy cold running through my veins and arteries and the feeling of insects crawling through my veins and arteries. Could this be full body RSD? What medications to take to stop these feelings that are driving me crazy and make me feel sad and desperate? Thanks for your information
Pain - Icy cold feeling & insect crawling feeling in veins & arteries (RSD)?
Question posted by kittycapucine1974 on 17 Aug 2011
Last updated on 22 August 2011
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Answers
sTigerrr
17 Aug 2011
Hi, I have RSD as well (left foot/lower leg all the time and right foot/lower leg when it wants to chime in) and among all of the other symptoms, experience painful cold symptoms and other "weird" cool symptoms, but only at the sites of where my RSD is located and not exactly like you're describing. But I don't want you to worry and think you are now getting full body RSD. From what I have read, I think that IF one's RSD is going to spread (and it can, but even if it does, that does not mean it will go full body), it tends to either jump from one limb to another and/or work its way from an extremity inwards towards the trunk (i.e. hand-->arm-->shoulder-->chest or foot-->lower leg-->upper leg-->hip, ect). This does not happen to everyone! It could start anywhere that an injury occurs and stay in that spot. Mine started in my left foot, went to my right and spread up to both of my lower legs as I was not diagnosed for 13 months. It's been 18 months since the initial onset of sympoms and it has not spread further, but I feel some referred pain in my hip. Are you feeling these cold and insect in your veins feelings throughout your whole body or only in your left knee/leg? What kind of Dr to you see to manage your RSD pain? What medications are you currently taking? I am taking Lyrica, Tompomax, and percocet- and could not live without my electric heating pads both at home and at work (that really helps with the pain!! even the burning pain not associated with cold). I totally understand the feelings that all of the symptoms are making you feel, sorry you are feeling this way- I hope that someone can answer your question better that I could asap... hang in there- there are a lot of great people on this site that will be along to help you that have been living with RSD for many years and are very knowlegable. -Shannon (also born in 1974 ;) )
Kathi808
17 Aug 2011
I also have been diagnosed with RSD. I broke my neck and lower back etc in a horrible car wreck (head-on) It's been 13 years and i have icy and hot shooting pain in my arms, legs, and spine. I have been on everything you can name. Finally off the oxy's, morphine, and percodans. Now I take Gabapentin and Methadone (10mg-4-6x a day). I take 150mg Seroquel to sleep. This is the best I've felt in years!! I now have some 'new' things happening due to nerve damage. The Lower Rt. muscle in my abdomen has dropped. Has anyone ever had this happen? It's bulging like a potato from my rt. tummy from belly button to hip bone. It hurts a lot on my back from T-11 to L-1... I've been told it can not be fixed!! Any info appreciated.
PS I got a good book about RSD online. Lot's of info.
Aloha
sTigerrr
18 Aug 2011
Hi, Kathi... glad that you are feeling better with your current medication regimen. I don't know about the new muscle drop that you are experiencing though, sorry. What is the name of the book? I'm always looking for new ways to educate myself about RSD. Sometimes my feet feel like they are getting frostebite!! Other times they are just burning or my leg muscles are aching, throbbing, twitching, ect. and NOBODY seems to understand that doesnt have RSD- it's so crazy. People don't think you're in pain if they can't see it.
kittycapucine1974
19 Aug 2011
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. Yes, I want to die now, right now. I know for sure that, sooner or later, I will find the courage and strength to kill myself. I just have to find one way to die: one way that would be quick and painless, and especially one way where doctors could not save me when I commit suicide. Someday, I will find the way to death. I have no doubt I will. As Abraham Lincoln said: “Always bear in mind that your own resolution to succeed is more important than any other one thing.” My success will be to be dead, even if I will not be here anymore to see myself dead.
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.
My next task is to look for suicide forums, where I could very well get some good ideas on how to die quickly and painlessly, without leaving doctors a chance to save me. Even without these forums, I know I will someday find one of the only two possible solutions:
1) Medications to control the feeling of icy cold running through my veins and arteries and the feeling of insects crawling through my veins and arteries
2) Death
Kathi808
19 Aug 2011
The book I sent away for also is available as an e-book (perhaps for free)
It's called Reflex Sympathetic Dytrophy. It's a guide presented by Medifocus.com, Inc It's very informative.
Yes it's true.. no one really understands what they can not see or FEEL.
sTigerrr
19 Aug 2011
Please don't do anything rash. I know and understand the feeling of not wanting to live anymore because of RDS and because of nobody believing you, including Doctors and not getting the help that you deserve and are entitled to. I believe everything that you are saying. Don't give up just yet. Like I said before, it took me 13 months to even get diagnosed with RSD which in the meantime it had spread. What I had left out was that for the past 12 years, I have been working for the biggest neurology practice in my area and still couldn't get help. I figured out my diagnoses myself and ran to a pain management Dr and a new Neuro outside of where I work. And I was treated horribly at my job on top of it all. There has to be an answer for you. It seems with some doctors that if they do not have the answers or the knowledge, they will never admit it and just dismiss something alltogether, or write it off as something else because of their ego/pride.
Let me check out a couple of things and maybe contact a member or 2 on this site and get back to you tomorrow after work- hang in there please... xoxox -Shannon
Inactive
19 Aug 2011
Hi Shannon, good to see you!!
Kitty, please do NOT HARM YOURSELF, suicide is a permanent solution to a temporary problem! Please think of the people that love you, that you love... how will they feel when you do yourself in? I don't mean to be a judgemental witch, yet think of other people in much much worse curcumstance, I realize tis all relative. But there ARE doctors out there that care and that will HELP YOU!! You must persevere, keep trying to find a doc that gives a rats arse!! Don't cave into the pull of death.
RSD is hellish indeed, and so is Fibromyalgia and RA, yet I persevere, I go on, I smile when tis the last thing I want to do, I attempt to give in a loving way to others. This is what keeps me going during excrutiating pain, pain that is unbearable 24/7!! Just keep your chin up KITTY, IT HAS TO GET BETTER!!
I wish you nothing but the best Kitty and you too Shannon and all that suffer with hideous chronic pain.
Your friend,
sTigerrr
19 Aug 2011
~Hi, Sweet La La ;) !! I haven't been on here in a good while- very nice to see you on here, and thank goodness you responded here! Please, if you can think of anybody that may be able to help kitty with some more RSD advice or where kitty can go from this point- please ask them to help!! ~~KITTY, I hope you are feeling better tooday than yesterday- or at least more hopeful!!! Please look on this site under RSD for the RSD Support Group (or come to think of it, there may also be groups listed under the names Chronic Regional Pain Syndrome, or even Causalgia), or anything else of your interest (peripheral neuropathies, anything cardiologic, ect) and you can see other RSD related questions formerly asked and all of their answers and comments as well as see all of the members that belong to the RSD Support Group. I'm going to send you a friend request right now, you may accept it if you'd like :)
kittycapucine1974
19 Aug 2011
Hi, everybody:
Shannon, it is not that I want to give up now and it is not that I do not enjoy life. It is just that I do not enjoy life with RSD and no love. My parents do not love me. My father keeps telling me he is ashamed of having a disabled daughter. He also tells me I should leave the house because he is sick and tired of seeing me every day. In this case, I would have nowhere to go, except on the streets with other homeless people. What I earn in my job (about U.S. $ 1,300 per month) is not enough to pay for rent (minimum U.S. $ 1,300 per month), medications plus doctors’ fees (minimum U.S. $ 350 per month), transport (minimum U.S. $ 100 per month), food, gas, electricity, water, etc. My mother tells me that she wished she had aborted me and that I would kill myself to rid them of my presence.
Unfortunately for me, on a small h****** island like Tahiti, there are only one pain management doctor and a few anesthesiologists and neurologists. I already know the pain management doctor, who is not reliable (what would you think of a doctor whose specialty is pain management and who tells you you can cut a fentanyl patch with no reservoir in two?), who does not believe me, and who does not want to treat me. The anesthesiologists do not take chronic pain patients; they only take patients to anesthetize them for surgery and to care for their post-operative pain. All the neurologists do not want to see me for my RSD, but only for my epilepsy.
Quote: “It seems with some doctors that if they do not have the answers or the knowledge, they will never admit it and just dismiss something altogether, or write it off as something else because of their ego/pride.” I totally agree with you.
I am trying to hang in there but I do not know if I will still be there tomorrow.
Quote from sweet lemon: “Suicide is a permanent solution to a temporary problem!” RSD unfortunately does not seem at all to me like a temporary problem. This includes the feeling of icy cold running through my veins and arteries and the feeling of insects crawling through my veins and arteries.
Quote: “Please think of the people that love you, that you love... how will they feel when you do yourself in?” No one in my family loves me. I have no friends who love me. I have no coworkers who love me. No one loves me, no one.
Yes, there are people in much worse circumstances than me. However, the contrary is also true. There are even more people in better circumstances than me, including people who are completely healthy.
Quote: “But there ARE doctors out there that care and that will HELP YOU!!” If you can find one such doctor in small French Polynesia, where I live, congratulations! I will run and see him or her! There are quite a lot of doctors there, but none cares about me. None of these doctors wants to prescribe anything to help me with the feelings of icy cold and insects. I have seen so many doctors in French Polynesia they practically all know me. Those who do not know me are told by those who do know me to avoid me like the pest. Why? I do not have any idea. I am not perfect, but I certainly have qualities that make me deserving of being treated by doctors. So what do I do? Win the lottery so I can see a foreign doctor? I know full well I will never win the lottery, even though I have tried to play so many times in the past. The odds at winning the lottery are extremely low.
Quote: “You must persevere, keep trying to find a doc that gives a rats arse!!” I have been in French Polynesia for five years and I have been trying to find helpful doctors for five years. So far, no success!
Quote: “I persevere, I go on, I smile when tis the last thing I want to do, I attempt to give in a loving way to others.” To be able to do this, you must receive at least some love from some people. This is not the case for me. How to persevere when you are not loved? How to go on when you are not loved? How to smile when you are not loved? How to give in a loving way to others when you are not loved?
Quote: “Just keep your chin up KITTY, IT HAS TO GET BETTER!!” I hope so because, as a human being, my patience has limits and I am very close to reaching mine.
I am very seriously considering shopping on the Internet for prescription medications without a prescription since this so-called paradise of French Polynesia has yet to have a doctor willing to help me. I am still waiting. Since no doctor here wants to be my doctor, I will be my own doctor. Like a Spanish proverb says: “Que sera, sera.” Whatever happens happens.
Inactive
19 Aug 2011
KITTY!!!
I cannot believe what I am about to type but here goes... buy the meds you need ON THE INTERNET, do it gurl. You've nothing to lose.
And hey, we on this site can love you. God gave me a gift ; the ability to LOVE OTHERS!! I am here for you.
I too am in horrible excruciating pain today, and I know of what you speak gurl.
Tis enough to drive ya mad at times.
xoxo
kittycapucine1974
19 Aug 2011
Hi, Everybody:
Quote: "KITTY, I hope you are feeling better tooday than yesterday- or at least more hopeful!!! " I am sorry to say that I am not really feeling better today. All the doctors' refusal to help me hurts so much! I trusted them with my care, I really did, and look where I got! I think I will never, ever trust a doctor again.
Quote: "I'm going to send you a friend request right now, you may accept it if you'd like :)" I would like to, but I am not sure how to do that.
sTigerrr
19 Aug 2011
That is a terrible, unfortunate story, Kitty. You are ready, willing, able, and educated to fight the battle of RSD- but those around you are trying to pull you down for some reason. How cruel. Not that I haven't seen that in my own life. But not by my own parents, the live out of state and don't even really understand RSD at all actually. Do you have siblings? If not, who are they expecting take care of them when THEY need it in the end? Hell, even if you do have siblings, you NEVER know what may happen in the future with your siblings, they may end up not being reliable, ect.- you could have your RSD well in control down the line and your PARENTS could be disabled (they could be disabled TOMORROW for all they know, or end up with RSD THEMSELVES) or end up with Alzheimers and where will you be when they need you??? This behavior from them would make me want to do whatever it takes to get the hell out of their home asap and never look back.
Let's see what we can all figure out collectively, there's got to be some answers for you- just give us some time. Shannon
sTigerrr
19 Aug 2011
Sorry, Kitty- I just sent the friend request so you probably didn't see it before- you should see it now...
kittycapucine1974
19 Aug 2011
Hi, sweet lemon:
I can understand your not liking my buying prescription medications on the Internet without a prescription. I really can. You do not want anything bad to happen to me from these Internet medications and that is really kind of you. I am not the only guilty one here though. The doctors in French Polynesia share a very large responsibility in this also, believe it or not. If the doctors in French Polynesia had done their job, that is, help me with these feelings of icy cold and insects with medications prescriptions (since nothing else works), I would not have had to shop on the Internet.
Quote: "You've nothing to lose." Yes, I know I could lose my life by using Internet medications. But I feel like I have no life worth being called a "life" anyway since these horrible feelings started.
Quote: "And hey, we on this site can love you. God gave me a gift ; the ability to LOVE OTHERS!! I am here for you." My parents repeated when I was a young child and still repeat that I am not worthy of being loved. A psychologist told me that when children grow up hearing this all the time, they end up believing it. This is what happened with me. This is why I am afraid of not being worthy of the love of this forum's users. It is nothing personal against anyone.
Quote: "I too am in horrible excruciating pain today, and I know of what you speak gurl. Tis enough to drive ya mad at times." Even if my two horrible feelings never get better sooner or later, I sincerely hope your pain will get better. When I see someone in pain (physical or emotional), my first thought is to want to help that person.
sTigerrr
19 Aug 2011
Also, i've been trying to rack my brain... are there any Universities where you live? How about any research studies that pharmaceudical companies might conduct there??? I know it might be a long shot but I'd rather ask and have you say "no" than not ask and miss you having an opportunity.
kittycapucine1974
19 Aug 2011
Hi, Shannon:
Quote: "You are ready, willing, able, and educated to fight the battle of RSD- but those around you are trying to pull you down for some reason. How cruel." The people around me who are trying to pull me down are especially my parents and doctors.
My parents love, really LOVE my younger brother because he is good looking, is healthy, is instructed (Master's Degree in English), is intelligent, is not shy, has a very good job (teacher in a high school), earns a high salary (at least U.S. $ 4,000 per month), has a girlfriend (also earning a good salary; at least U.S. $ 3,000 per month), has a biological child (aged 15 months; I cannot produce biological children), has a luxury house with a beautiful garden, swimming pool, jacuzzi, and gazebos. When they compare me to him (which they do all the time), I do not reach my brother's ankle.
My father had a stroke a few years ago; he still has some trouble articulating words correctly. He also has high triglycerides. However, he is still ashamed of me and my disabilities. He calls me all the time a "druggie" because I need narcotics for my RSD pain, but he enjoys drinking alcohol and he has no medical reasons for doing so while I do have medical reasons for using narcotics. My mother has hypertension, diabetes, high cholesterol, and a cataract.
I would have left their house if I had had the financial means to. I am not healthy enough to live on the streets.
Thank you, everybody, for your answers and kind words. Now, I am starting to feel better, thanks to all the support and love you all give me. I will be forever grateful to you all for this.
sTigerrr
20 Aug 2011
No need to thank us! (Though you are very welcome). That's what we are here for, and believe me, there are many, many days that we all are down and need help to go on through the pain, the stress, the anxiety, and the feeling of being all alone. How are things between you and your brother and between you and your sister in law? I haven't spoken to my sister in years. It sounds like your parents are being a bit hypocritical, and have placed all of their eggs in your brother's basket. Like I said before, unforeseen events may not make him available to be there for them in the future. Let's just say that Karma is a bitch! Just know that you DO NOT deserve to be treated the way that they are treating you and that these hurtful things that they say hold NO VALIDITY! The ONE thing that they CAN NOT take away from you is your self worth unless you let them, so be strong- and let that be one of the things that you work on.
Do you know of any other people in your area that have RSD, fibromyalgia, neuropathy, chronic pain? Are there any kind of support groups/meetings where you live, something like that, that you can find out about online? Anyone maybe that you've met in the waiting room at Dr appointments? I'm just asking because sometimes it can be helpful to have friends that understand (and believe) what it is that you ARE going through- someone that can relate. I actually don't myself, and it really sucks. Maybe you can even start one. Maybe there are others like you that are feeling that they are alone and wish there was a group in your area that existed for them to join. Your parents don't even have to know anything about it. It can be held @ a church maybe (off hours), or meet @ a cafe or coffee house, a library, maybe your brother's place- even his garage or basement- anywhere! I'm just trying to throw some ideas out there until I can think of something to do about getting you a proper Dr, medication, or a clinical research trial study, or seen at a university- something. Just brainstorming.
Kathi808
20 Aug 2011
Aloha Kitty... I know that everyone on this website understands how hard it is to carry on with our lives while in this constant chronic ever present PAIN.
I have hot/cold & shoting fire in my arms,neck, legs and feet... my skin feels sunburned all over my trunk..
ugh.. I can hardly be touched. I do not feel pleasure in my body any more... I don't even feel hunger. I am telling you this so you 'know' that I do understand. My husband of 20 years left me "not fun anymore" !! OMG
I had 2 teen sons w/ him and 3 upcoming surgeries. He went to the Bahama's with another woman to have 'fun'. OK OK Enough of MY Story.
BUT I did want to die, I wishedI had died in the accident that broke me and my life apart. It sucks to feel that low... and it can take over...
Please don't hurt yourself honey-girl... there are ways to get what you need.
I feel we all need a medical advocate.. it's often hard to seem 'too informed'
Dr.'s hate that!! I know because I'm all about researching and asking a ton of questions.. they hate me... But I do get good maybe even better care from them.. they get the books out..etc.
by LUCK I looked into a private meditation session with a man here on Maui..
Richard Alpert.. he's in a wheel chair now.. but still a GURU !! (known as Ram Dass around the world-quite a helpful soul)
We worked on my state of mind.. CAN'T deny the pain.. it's real. What we worked on was how I could accept the feelings and work toward simply allowing the pain to serge without judging it. I know this sounds far fetched to some people. BUT.. it has helped me so much!!! I'm still the same as far as RSD.. and een the lastest... muscles starting to ?drop?? ugh. Still have the crap.
But I feel different about it in my mind and heart.. it's there but it's not demanding all my attention because I already sort of shake hands with it.
I do take Methadone now 10mg 4x..Also Gabapentin.. together they are helping... neither was great alone...
. I used to take 4 -80mg oxy. That really wasn't working... it did not kill the pain. It has taken me 13 years to do this... (and the last 8 I was alone w/ my teen boys.. no job.. lying to re-fi my house to get some $$.) geez...
I Wish my sharing could help save you some time... to be happy with 'what is' .. can't really fight what is.
. Finally I have SSDI and they send me a monthly ck. 900.
Not enough to live on Maui.. so I have to be creative.
OK this is getting too long.. forgive me for that.. it's late.. I use MMJ at night and it's the best!! I make my own 'make you sleep..no matter what!' butter
I think you can get that in certain States? Do you have any of that where you live (Where??) And finally... I read that there are LAWS against Dr.'s under medicating a person. Why can't you get what you need? Is it about money?
The MediFocus.com Guide to Reflex Sympathetic Dystophy has lists of Dr.s
and the best treatment/protocol etc...
Please Don't give up on yourself!! Get away from ALL negative people
even if it's your family. Look for Women helping Woman org. in your area.
Where are you??? Maybe I could research for you? in your area OR a new area??
Aloha for now
Inactive
22 Aug 2011
Kitty,
Don't you have a two year old son? I thought you said you are not able to have any children of your own? I am confused now, for I found you on another site, and well... your story just doesn't seem to add up atall. Do you live with your parents, or do ye live in your own appartment?
Perhaps you can clarify some of this confusion?
kittycapucine1974
22 Aug 2011
Hi, Kathi808:
As soon as I find someone willing to let me use his/her credit card, I will order the paper version of the Medifocus guidebook on RSD, as well as all the other paper versions of RSD books I can find on Amazon.com. I prefer paper versions of RSD books because I can take these books anywhere with me, for example to show my doctors and physical therapists so they can get more education about this syndrome. Since I do not have access to a computer, except at my workplace, paper versions of RSD books are more interesting for me. Of course, I am not saying at all that e-books are not useful; on the contrary, I believe they are truly helpful to those who have a permanent or, at least, easier access to computers. After ordering all the paper versions of the RSD books I can and reimbursing the person who will have loaned me his/her credit card, I will start by educating myself.
Education is very important for an RSD patient so he/she can better know his/her syndrome and manage it.
Quote: "No one really understands what they can not see or FEEL." I could not agree more. Unsupportive and uncaring family members, friends, coworkers, and doctors really, really need to realize this instead of judging us, RSD patients, as if we were basket cases.
Thank you for letting us know that RSD books do exist. I had been wondering about this for a long time.
kittycapucine1974
22 Aug 2011
Hi, Shannon:
Quote: "I figured out my diagnoses myself and ran to a pain management Dr and a new Neuro outside of where I work." I forgot to mention that, like you, I sometimes feel obliged to make my diagnoses myself, with the help of some reliable medical web sites. How to do otherwise when no doctor will help us? It is not that I pretend to have the education of a doctor but, sometimes, these doctors drive us crazy when they refuse to admit they do not know what is wrong with us (because of their pride). They prefer to say that nothing is wrong with us and that our symptoms are in our mind or caused by stress, when it is not always true.
Quote: "I was treated horribly at my job on top of it all." This happened to me also before I found the job I now have.
Quote: "It seems with some doctors that if they do not have the answers or the knowledge, they will never admit it and just dismiss something alltogether, or write it off as something else because of their ego/pride." You expressed prefectly what I feel.
Thanks for your help and understanding.
kittycapucine1974
22 Aug 2011
Hi, Shannon:
There are no medical universities where I live and no pharmaceutical companies conducting any research studies. Even in France, these are extremely rare. I think Michael Moore is completely wrong in what he says in his documentary "Sicko". You used to be able to get good medical care in France and its territories (including French Polynesia) but that has completely changed, maybe because of the financial crisis?! Of course, the poorest people are always the first ones to pay the price for bad medical care. The rich ones have no problem: not only they can afford to pay the private doctors and the medications they need, they can also afford to buy complementary medical coverage. I lived in the United States for about eight years, and if I could, I guarantee you I would go back there right away. I love this country sooo much! But with the FDA's REMs program, I do not know what to think anymore...
I am afraid that, with this program, I would have to kiss good bye to my Duragesic and MSIR, especially because the dosage I use is quite high (equivalent to about 360 mg of morphine daily... ) Unfortunately, opioids do not stop the icy cold feeling and the insect feeling...
kittycapucine1974
22 Aug 2011
Hi, Shannon:
I really and sincerely want to thank you all because one thing I do not forget is that people I do not know and who do not know me, like the people of this forum, care more about me and give me more love and support than my own family. This caring, this love, this kindness, and this friendship you all give me is priceless. I particularly appreciate it because I know it comes from your heart and is sincere.
My brother is just like my parents. I do not exist for him, certainly because I am different from him. It is often said that rich people do not like to mix with poor people (my brother is rich and I am poor). It does not matter to him that I am his sister. I have no doubt he does not consider me like his sister. Every time he organizes a lunch at his house between the young people of the family, I am never invited. My presence at his house greatly displeases him.
His girlfriend, even if she tries to be kind, would never do anything for me that would displease my brother. When she comes into my bedroom to talk to me, my brother gets angry. He certainly does not want her to support me. To him, I am like s***. Even the dust he steps on is more important than me.
Quote: "I haven't spoken to my sister in years." It is the same with me. Even when I ask my brother a question that requires a simple yes or no as an answer, he does not reply. He does not even look at me when I talk to him. I have the feeling of being invisible to him.
Quote: "It sounds like your parents are being a bit hypocritical, and have placed all of their eggs in your brother's basket." This is sooo true.
Quote: "Let's just say that Karma is a bitch!" Oh yes, she is! My brother gets all the good things in life while I get all the bad things. I do not claim to be perfect, but I still think I deserve some happiness on this Earth. After all, I also have qualities, even if my family refuses to see them.
Quote: "Just know that you DO NOT deserve to be treated the way that they are treating you and that these hurtful things that they say hold NO VALIDITY!" Your kind words really do touch me.
Quote: "The ONE thing that they CAN NOT take away from you is your self worth unless you let them, so be strong- and let that be one of the things that you work on." My parents try to take away my self worth by telling me I am worth nothing. Like I said in a previous message, after hearing this for decades, since I was a young child, I then end up believing it, even if I do not want to.
Quote: "Do you know of any other people in your area that have RSD, fibromyalgia, neuropathy, chronic pain?" Yes, but each of these persons has their own life, their own family, and does not have the time (or does not want to take the time) to be with me.
Quote: "Are there any kind of support groups/meetings where you live, something like that, that you can find out about online?" The only support groups I can find are on Internet forums, like this one. In French Polynesia, there are no support groups or meetings for patients to meet face to face and help each other.
Quote: "Anyone maybe that you've met in the waiting room at Dr appointments?" Unfortunately, no. When I tell these people about my RSD and chronic pain, they seem to want to go away as if I was a leper and as if I was going to contaminate them. No matter how much you tell them RSD is not contagious, they do not want to believe you. I find people in U.S. doctors' waiting rooms to be more open and caring. I am really sick and tired of French Polynesia. It is not the paradise that postcards show.
kittycapucine1974
22 Aug 2011
Hi, Shanon:
For some reason, the computer would not let me continue typing my message in the same answer box, so the rest of my answer to your message is here.
Quote: "I'm just asking because sometimes it can be helpful to have friends that understand (and believe) what it is that you ARE going through- someone that can relate." Friends like you describe would indeed be very helpful but, unfortunately, I have no friends like these, except on this forum and on another forum.
Quote: "I actually don't myself, and it really sucks!" I really do not understand why people do not want to be friends with a person as wonderful and caring as you are. I am not at all ashamed to say that I am proud and honored to count you as my friend. You are a very special person and people who do not want to be your friends do not realize they lose a lot by not counting you as their friend. People like you are true friends, real friends, always there when you need them, always there to help you.
Quote: "Maybe you can even start one. Maybe there are others like you that are feeling that they are alone and wish there was a group in your area that existed for them to join." If I could make my shyness go away, I would like to do that. I have been shy since I was a young child because I have not received love from my family and because I have been rejected by so many people.
I thank you again for everything that you are doing for me. Instead of having a brother like mine, I wish I had a sister like you. You are one of those special ones.
Inactive
22 Aug 2011
Quote "Karma IS a biznitch babe"!!!
kittycapucine1974
23 Aug 2011
I am infertile, which means I cannot produce any biological children. Once, my best friend got pregnant. She wanted to have an abortion because she never intended to get pregnant. She called her pregnancy an error. She does not particularly like children, even if she does not hate them. I told her she should keep her baby because she has the chance of being able to produce children and she can learn to love her baby. She refused to keep her baby. She said she would have the abortion unless I accepted to sign court papers stating I was adopting this baby as my own after its birth. Since I looove babies and I always wanted to have one, I accepted. When the baby was born, I adopted him and called him Bradley. He is about two years old now, almost two years and a half.
I live with my parents. My baby recently arrived from the United States. Since my parents hate him (due to the fact he is not my biological son), another Polynesian girl friend of mine accepted to let him live in her house with her and with my soon to arrive police officer boyfriend. By the way, I live in fear my boyfriend will abandon me one day because of my RSD. I want to believe my boyfriend will be my boyfriend for the rest of our lives or maybe even become my husband one day, but I am afraid RSD will separate us. I love my boyfriend so much; losing him would be not only a terrible heartbreak for me and my baby, but it would also give my family an opportunity to make fun of me, with words like: "No man wants a disabled girl who takes morphine." I love putting my head on my boyfriend's shoulder and I love it when he holds me very tight in his arms. He calls me his princess or his treasure and I call him my king or my woolf. He always tells me, every single day: "If you ever leave me, I am going with you!" I did not tell him about my new RSD problems because I am afraid he will abandon me. I love him so much I could not live without him! Remember, I told one of the posters in this thread that men often abandon women with RSD. One day, he caught me trying to kill myself by jumping off the 11th floor balcony. He saved me. If I post the details here, the moderators will erase it. Each forum has different rules on what can and cannot be posted.
I go to my girl friend's house every day to take care of my baby till he falls asleep for the night. Then I go to my parents' house. I do not want to impose myself on my friend by moving in into her house. I am waiting for my boyfriend. He earns enough money to rent a house for the three of us (him, me, and our baby). Yes, he considers my baby as if he was his own. My baby also loves him. I most certainly hope this f****** RSD will not break up our family.
Right now, my baby is at my workplace, right next to me. He is sleeping on a mattress on the floor. My boss is so kind he does not say anything. After all, my baby does not prevent the work from being done. He had cystic fibrosis and had a one heart, two lungs, and two kidneys transplants. I did not want to talk too much about this because he got his transplants illegaly. My lawyer does not want me to add more details on this site, for fear I will get in trouble. I was posting on another forum, which I quit because I did not appreciate being criticized for publishing a scientific study on severe chronic pain being a killer.
I had my own apartment (in fact, my cousin's) in Honolulu, Hawaii, not here, in Tahiti, French Polynesia.
If you have more questions, feel free to ask. My lawyer just does not want me to talk about the transplants my son got.
Related topics
pain, reflex sympathetic dystrophy syndrome
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