Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Cathy, Have you ever thought of going to the same Doctor that Tom goes to? Just a thought.... Tonia -------Original Message------- CathyI know that there are many drs out there that just dont seem to care, that they would rather we disappeared than to ever show up at their offices again, BUT just the same there are those out there who would search high and low to find a treatment that works for us and those are the ones you need to try and find! Call every Dr you can locate and ask them if they know what RSD is? If they can give you an explanation about then your onto a good start, if they dont, steer clear of them! But don't ever ever give up Cathy. Keep fighting for yourself, your family and your friends!We care Cathy, never doubt that!Hugs and wishes for a less painful day!Donna ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Cathy, None of us can be strong all the time, where do you live is there anyone in the group here close enough to you or how about friends or family? Do you take any anti-depressants? Because if not you may want to try it, also if you can talk to your pastor if you go to church. I wish there was more than just words and my prayers. You are correct to say this disease is not fair, but I haven't met one that is. So Cathy I hope and pray that this despair you are feeling will go away. Lin hello linda. i cried when i read this. my hut is burning and i do notknow what to do. all i am doing is crying. it is not fair. the victimgets the worse of this. i will try to ne strong but failing mierableyright now. thanks cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Cathy, None of us can be strong all the time, where do you live is there anyone in the group here close enough to you or how about friends or family? Do you take any anti-depressants? Because if not you may want to try it, also if you can talk to your pastor if you go to church. I wish there was more than just words and my prayers. You are correct to say this disease is not fair, but I haven't met one that is. So Cathy I hope and pray that this despair you are feeling will go away. Lin hello linda. i cried when i read this. my hut is burning and i do notknow what to do. all i am doing is crying. it is not fair. the victimgets the worse of this. i will try to ne strong but failing mierableyright now. thanks cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Cathy, None of us can be strong all the time, where do you live is there anyone in the group here close enough to you or how about friends or family? Do you take any anti-depressants? Because if not you may want to try it, also if you can talk to your pastor if you go to church. I wish there was more than just words and my prayers. You are correct to say this disease is not fair, but I haven't met one that is. So Cathy I hope and pray that this despair you are feeling will go away. Lin hello linda. i cried when i read this. my hut is burning and i do notknow what to do. all i am doing is crying. it is not fair. the victimgets the worse of this. i will try to ne strong but failing mierableyright now. thanks cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 I wish I could answer why we were the "lucky" ones who wound up with RSD.. I do note some patterns.. fibro and raynauds are fairly common co-diagnosis.. I find that MOST people who have RSD currently or have, smoked... but not all. I've tried keeping track of hundreds of people and what they all have in common, and the answer to that is not everyone has everything in common. Must be some pre-disposition to develop RSD, much the same one is pre-disposed to other diseases, such as cancer, diabetes, etc. If anyone finds the reason why, a cure can't be far behind.. I'll keep praying for that! Hugs, JO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Cathy, I know that with auto-immune disorders the T-cell gets damaged alot...I know my blood tests have shown that I have damaged and mutated T-cells. I wonder how many know they have this because it's not usally tested for. Hope you have a great day..Hugs..Ginny wrote: Cathy, I am sorry that you have to add another problem to RSD, is there anything that they can do to help you with the blood, or is this something that you have to live with, does it make the RSD worse? Take care I will keep you in my prayers. Lin i have a blood disease called iga deficiency with t cell defect. i didnot know i had this until my son was 18 months old. no ne in family hasthis blood disease. so i was born with blood and immune disord.cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Lin, I found a site that is doing a poll on RSD..here is the link...maybe we could set up something similiar but with the questions we want answered...and I filled out the questionaire..hope you do too...Hugs..Ginny RSDSA :: welcome fill out the survey on this page...very interesting questions.. wrote: Ginny, Yes that would be very interesting, I will ask my Doctor and see what he says, I think it would very interesting, they have probably already thought of it but we can dream of coming up with something all on our own. Lin Lin it would actually be very interesting if we all had T-cells that were damaged...it may be a link that we all never thought about including drs...Hugs..Ginny wrote: Ginny, I think my doctor tested for that, I will have to ask him about this and if my t cells were strange. He ran every test he could think of trying to find out what was wrong, before the bone scan actually showed where the RSD sites are. My next appt is on December 2nd. Now the hard part will be trying to remember, which can be a very interesting prospect. take care, Lin Cathy, I know that with auto-immune disorders the T-cell gets damaged alot...I know my blood tests have shown that I have damaged and mutated T-cells. I wonder how many know they have this because it's not usally tested for. Hope you have a great day..Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Lin, I found a site that is doing a poll on RSD..here is the link...maybe we could set up something similiar but with the questions we want answered...and I filled out the questionaire..hope you do too...Hugs..Ginny RSDSA :: welcome fill out the survey on this page...very interesting questions.. wrote: Ginny, Yes that would be very interesting, I will ask my Doctor and see what he says, I think it would very interesting, they have probably already thought of it but we can dream of coming up with something all on our own. Lin Lin it would actually be very interesting if we all had T-cells that were damaged...it may be a link that we all never thought about including drs...Hugs..Ginny wrote: Ginny, I think my doctor tested for that, I will have to ask him about this and if my t cells were strange. He ran every test he could think of trying to find out what was wrong, before the bone scan actually showed where the RSD sites are. My next appt is on December 2nd. Now the hard part will be trying to remember, which can be a very interesting prospect. take care, Lin Cathy, I know that with auto-immune disorders the T-cell gets damaged alot...I know my blood tests have shown that I have damaged and mutated T-cells. I wonder how many know they have this because it's not usally tested for. Hope you have a great day..Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Lin, I found a site that is doing a poll on RSD..here is the link...maybe we could set up something similiar but with the questions we want answered...and I filled out the questionaire..hope you do too...Hugs..Ginny RSDSA :: welcome fill out the survey on this page...very interesting questions.. wrote: Ginny, Yes that would be very interesting, I will ask my Doctor and see what he says, I think it would very interesting, they have probably already thought of it but we can dream of coming up with something all on our own. Lin Lin it would actually be very interesting if we all had T-cells that were damaged...it may be a link that we all never thought about including drs...Hugs..Ginny wrote: Ginny, I think my doctor tested for that, I will have to ask him about this and if my t cells were strange. He ran every test he could think of trying to find out what was wrong, before the bone scan actually showed where the RSD sites are. My next appt is on December 2nd. Now the hard part will be trying to remember, which can be a very interesting prospect. take care, Lin Cathy, I know that with auto-immune disorders the T-cell gets damaged alot...I know my blood tests have shown that I have damaged and mutated T-cells. I wonder how many know they have this because it's not usally tested for. Hope you have a great day..Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 you say stop chasing for the cure. well if yo cannot chase the cure thenthere would be no hope for cancer or any of the other illeness. i ambattling cancer again. they have come a long way with curing cancersoone day they may do the same with rsd and the other diseases, rememberrsd has been around for a very long time. but it has only been resentlythat it was even acknowledged. more people know about this than when iwas first diagnosed 11 years ago. so in time there will be a lot morehelp. i live for the hope. it may not be the cure but hope no one willever take this away from me. it is imne and i will be selfish and notgive it to anyone. cathy Cathy, I am so sorry to hear that your are battling cancer again, I hope you can beat it again. Also I don't think anyone should take hope away from you or anyone. So keep on hoping and good luck with all your cancer treatments that you will have to have. my prayers are with you, Lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 you say stop chasing for the cure. well if yo cannot chase the cure thenthere would be no hope for cancer or any of the other illeness. i ambattling cancer again. they have come a long way with curing cancersoone day they may do the same with rsd and the other diseases, rememberrsd has been around for a very long time. but it has only been resentlythat it was even acknowledged. more people know about this than when iwas first diagnosed 11 years ago. so in time there will be a lot morehelp. i live for the hope. it may not be the cure but hope no one willever take this away from me. it is imne and i will be selfish and notgive it to anyone. cathy Cathy, I am so sorry to hear that your are battling cancer again, I hope you can beat it again. Also I don't think anyone should take hope away from you or anyone. So keep on hoping and good luck with all your cancer treatments that you will have to have. my prayers are with you, Lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 Cathy, Chronic Pain Syndrome (CPS) is different from Complex Regional Pain Syndrome (CRPS). I'm not sure how, but I don't think that CPS is psychological, I think that it is actually a physical pain syndrome. Its just not RSD is all. Tonia -------Original Message------- could you please expplain chronic pain i thought you said it ws a psy disorder. could you clarifly. i have chronic pain and was never told this. please explain. cathy Quote Link to comment Share on other sites More sharing options...
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