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| | | From: kdutton | Sent: 5/15/2006 3:09 PM |
I am so sorry to hear you are going thru this dreadful disease. I was diagnosed with RSD in 1995 in my left arm. By 1999 it was under control and I thought I was one of the lucky people. In 2004 I broke my knee cap at work and thought ok got thru that so the RSD won't resurface. I was wrong. On May 1st of this year I was out of remission and now have stage 2 RSD in my left leg. The doctor tells me there is a 99.9% chance it will move back into the original affected area within 6 months. I work as a nurse and I will tell you, even people in the medical field are thoughless. My nurse manager when I told her what was going on told me that she has been in constant pain for years and "I just need to get over it and live with it". Out of the 45 people I worked with only 2 of them have even been kind enough to call me to see how I was doing. I am on crutches for the time being. My doctor tells me that it is only a matter of time before I will become wheelchair bound. RSD causes contanst burning pain that only people who have it can understand. Others just can't understand why we can't function the same way we did before. |
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Thank you for the support. Your right until you acctualy feel the pain you really dont know what its like i wouldnt wish this pain on my worst enemy. I am so sorry that your not getting the support you need from your work or friends. If i was you i would tell that nurse manager were to go lol...At least we have each other even if its chating on a computer to peolpe we have never meet. For me most of the best support and answers i have gotten have been from peolpe in these online support groups, i think its because they really do know what it feels like. What are you doing for treatment? What have you had side effects from? If you don't mind me asking. It helps me to hear from real people and not just docs and med journals. Best Wishes Christy |
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| | From:  BM_Fike | Sent: 5/18/2006 4:44 PM |
 Hi Christi, i am sorry to hear what you are going thru. i to have rsd. but i have it in my entire body. i was told by several dr. that i was crazy also and it was all in my head, that went on for 18 months and finally a dr. believed me and told me what i had. we all have to hang in there together. write anytime melanie |
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Hi Melanie Iam sorry to hear you have been suffering for so long. I am still new to all of this and trying desperatley every day to cope and hold on to some form of normalsey. I have just started to turn to these groups for support and friendship from people who know what it is like and truley understand. In the hopes that inturn i can be there for a new comer. How long have you had rsd ? What kind of treatments have you tried? If you dont mind me asking. Thank you for your support. Christy |
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| | | From: BM_Fike | Sent: 5/24/2006 2:17 PM |
hi christy no i dont mind you asking any questions, like i said i have had it for several years. when i was first diagnosed, i had all kinds of treatments. i was a human guinnie pig, you might say. i had spinal blocks, total epideral block, then tens unit, several meds. but everytime they tried something, it would just make the rsd worse. then i was in the hospital getting a block and fell and that was it. i finally had to say, stop, this is not working. so i just do the pain meds, and pray daily and try to deal with it as best i can. like all of us. these groups are neat, cuz you can come on when you want and just vent and everyone understands our good and bad days and no condemnation. we really are not crazy. well write anytime and i am praying for you. god bless melanie |
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sry it took so long to for you dx. if u read my post u will see im rare in the fact that it was discovered right away after my surgery and my treatment as been wonderful. now if i can control my stress i wouldnt be in remission but meds would work better. i hope u find what u are looking for here. bless u and hope u are having a wonderful day. lynn |
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Welcome {{{{{ KRISTY }}}}}} wowow,, it is horrible pain that I would not want too wish on my worse enemy neither.. We are certainly guinea pigs ,,, blazzing new trails for those after us praying that they do not go thru what we have.. I certainly hope.. Reason they call it practice of medicine.. Hope one day,, they do get it rite.. As we all know that rsd treats each person differently,,, what may work for one may not help another.. That is sad part.. I know that I am certainly researching,, looking for other ways too treat also .. I certainly get tired of the side affects.. They are certainly horrible.. I hate them.. One day we will have answers.. Get hold of me,,, on messanger anytime be happy too chat with you ,,, n give you other sites.. That have alot more information.. Have a safe great weekend.. [email protected] annie |
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 {{{{{{{{{{{{{{{{{{{{{{ Melonie }}}}}}}}}}}]]]] good too have you here.. Thanks for the support n input here.. Soo good too know that noone is alone in suffering. I been going too drs. for shots,, n other meds for some other things.. It is hard for me also.. I am online,,, answering when I am feeling like coping.. WOW,,, I hate the side affects.. Tuesday I will be going in for another treatment,, I should be back on Thursday.. I am feeling better when I do not have too deal with side affects or weather.. Uggs we been going thru that last couple of weeks... Thank you soo much for sharing.. annie
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Hi Christy, I am so sorry you have rsd. Miserable to have. I have had rsd in both my hands for 2 1/2 years. I have learned alot from reading and 'talking' to people in these support groups. Some days the pain in my hands is bearable, other days it's ridiculous! I have had over 15 stellate ganglion blocks, epidurals, spinal stimulator, etc. The ganglion blocks used to work but they have slowly stopped working. The others were worth trying and hoping & praying they'd work! I have also tried an enormous variety of meds. Right now I am using cymbalta and getting some positive results. It has helped with the burn. What are you doing for yours?
You are right, without a sense of humor, and some support no one can make it through this. Every once in a while I think, I could be worse, nah, this is bad. But, then, it seems God is showing me how much worse I can get and my hands feel as if something is ripping off my skin! Or I read about someone else. My husband has been wonderfully supportive. Like everyone, I have had some good docs, some awful docs and some arrogant ones! I hope this has helped.
I wish for you to have a low pain, high movement day.
Jennifer |
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| | | From: mggone | Sent: 6/16/2006 8:47 PM |
hi, i have had rsd for 2 yrs. it started in my left foot now is in both legs and up the middle for my back hips included.i walk with a cane because i force myself i was just not willing to give up walking just yet it keeps getting worse i have a neuro stimulator but that does not help much. every step i take makes me want to scream .sometimes that reminds me i am still alive. if you need to talk or ask any ? please do be well ericka |
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Hi Christy, I have had RSDS for 10+ years. I know alot about the diseasein the 1st and 2nd stage now my doc has told me I'm going into stage 3. I got it from bloodwork, how did you get yours? email if you would ever like to chat. [email protected] |
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Hi there dear ones,,,,,, WOWOW,,, so sorry that you are all suffering there. {{{{{ROBIN }}}} {{{{CHRISTY }}}}} {{{KIM}}}}} glad you have found something too calm it anyway. That I have not found anything too soothing. WOW , for me is been 7 yrs tho,, n goign on 8 now. WOWOW wish we all could get more help. Talks soon.. Going too send you some invites.. there. talks soon,, live chats n more information. annie |
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{{{{{LYN}}}}}}}}}} I am so sorry,,,, that I have missed your messages here. And some others. I really truly trie. I have been sick . Wishing I could goo hide,, O well we all have things we do not like. We all having badd days,, sad part is that more badd ones than good ones.. If you need anything give a holler. Will be happy too help in anyway possible. talks soon. annie |
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WOWOW,,, I know it can spread fast thru the body. {{{{{{BM }}}}}}} I feel for ya.. Welcome,, n soo glad you found us here. If you need more info,,, let me know I will email ya.. talks soon,, anything I can do let me know. annie |
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I have been playing with this for almost 18 years now!
I know about being a experiment trust me.
i guess the best advise I could give is if you have friends and family that support you keep them close.
People that call you crazy and such..............Ditch them!
A very good sense of humor really helps! |
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