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| | | From: Nukez | Sent: 9/30/2007 1:17 AM |
Welcome to the group! I'm also relatively new to RSD. It will be a year in November so I understand where you're coming from. It's really frightening to hear the most you can hope for is remission. My RSD started in my right knee and has spread pretty quickly. I now have it from my rear end to the tips of my toes in both legs. So when I say that feeling of "why me", will pass you can believe me. You really do have to go through the 5 stages of grieving before you accept this diagnoisis. And while you're doing that, find a good doctor that understands RSD. Here's to a 2 on the pain scale, Tamara |
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Tj,,,,, So sorry that we have too live with this!!!!!!!! It really helps too know that we are not alone at all!!!!!!! Do not be afraid too go into the other links here on site with the other groups!!!!!!!! There are alot of us around... Make sure that you do go thru the grieving process.. Please behonest with you!!!!! It really does help alot!!!!! We have too keep the stress out as much as is possible... We all search for remission!!!!!! Please know that we are all searching.. We understand!!!!! With drs who understand is other need that has to be filled!!!!!!!!!! We are here!!!! Most all of us are msn messenger and or yahoo messenger... Just look around.. If needed holler we be happy too answer!!!!!!!!!! With my time on hands,,, I am signed in alot most all the time. But following drs. order rite now being off feet as much as is possible.. Since being new too this all.. Do not be scared of looking into natural therapys neither... We use all and anything that will help.. remember what works for one may not work for someone else.. But we use all that we find n keep searching!!!!!!!!!! Family support is important also...Hard hard one when not understanding the kind of pain that we are going thru... Hard one!!!!!! So please know that we care n are around or soon will be!!!!! Huggzz my dear!!!!! Annie |
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thank you soooo much. this is the first time that i have heard from someone else that has rsd and I am overcome with emotion of not being so alone. my kids found me passed out at the bottom of my stairs today from a reaction to a fentnyl patch and i am not having the best day. how does one go on with their life when they know that each day is filled with so much pain? i feel like if i say i have rsd then i am saying i will have to live in pain for the rest of my life and i don't know that i can do that. how does everyone deal with this, and why have i never heard of this awful disease before i had it? i work in the medical field and people need to be aware and more research needs to be done because i NEED a cure, i don't accept this real well, because i hurt so much. thank you for your words of kindness. i will for sure be turning to the internet for support because no one else understands and i even think they think i am not in as much pain as i am
in. thanks and hope this finds you well also, kelly
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{{{{{Char }}}},,, My dear char,,,,, it is a really tuff one.. we all go thru our stages of grief ,,,, we cannot make it on our own tho.. We all needhelp with dealing with pain an issues going on.... We all have too deal with it all in our way.... There is no rite or wrong. Unless we completely refuse too deal or cope.. That is not any good. Sometimes we need counselors too help us with issues.. I was in counseling for four yrs.. Am needing to go in again.. Hard since moving to Texas too face all the issues.. I mean this move has put me in culture shock... It is k too grief,,, we have lost life as it was meant to be. Glad that you are back with the group tho... Anytime that I can help do not be scared too give me a holler.. [email protected],,,, or [email protected],,, when I am online I am signed in on both... No worry,,,, be happy too chat. and help in any way possible.. Huggzz my dear... Annie ,,, msn is having some issues.. so no worry keep trying to get in... stupid msn. Have as good time that is possible... Annie |
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My dear dear Kelly,,,,, we all have been thru these issues.. U r so rite that rsd needs more research... No doubts of that one... we all have too kee searching for drs. who do understand..... Sadd,,, really sad,,, when we do not live in areas that gives more choices...Sadd,,,,, hard one too cope... I am so glad that I do not have too make those 300 mile trips each week no more!!!!!!! Soo thankful... So thankful that I can now drive myself into drs.!!!!! Sooo very thankful.... That I am out of corn field county!!!!!!! Amazing!!!!!!! Truthfully amazing!!!!!!!!!!!!!!!!!!!!!!!!!!!! But keep searching.. There are some great groups on internet with rsd support... look around here there are more links for such groups here also... Have as pain free days as is possible dear... Glad too have you here posting also... Annie |
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|  0 recommendations | Message 8 of 10 in Discussion |
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| This message has been deleted due to termination of membership. |
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I agree with you in so many ways. I tell my family "I am fine" for their sake and sometimes mine. I find it hard to accept this awful disorder. I also find it hard to recoginize there is little true research or answers for all this. I am a nurse and had never heard of RSD until I was diagnosed! What kind of sick joke is that. I am so sorry your children found you in that way. I am curently pregnant (how stupid am I) and I fear how it will effect me as a mother. I sometimes hurt so much I can barely take care of myself how in the hell do I take care of a newborn? If you have any suggestions let me know. You are not alone, we are all in this together. Peace to you. -Jama |
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Kelly, I'd rather had a c-section with no epi.......Than to have the pain of RSD.....I too have studied in the Medical Field and had never heard of RSD untill it happened to me....there is no other pain like it or even close.....I use Lidoderm patches...I was under the impression from the International RSD foundation that fentnyl patches had been recalled Kelly....Be careful..and yes...the internet will tell you more than you care to learn...You must remember to be kind to yourself....it's not your fault that you have RSD seemingly trying to ruin your life and you're not crazy.....and you're not alone hun....I'm hoping to be able to afford a trip to Germany myself.....Hoping for the Ketamine Coma.....There is a treatment Kelly....It's just not legal in the States...There is also an outpatient treatment, but at much lower doses than the coma treatment....Don't know where you are....I'm in Pennsylvania.....I have an appointment next may with a Physician here....Hoping I can get the Ketamine treatment.....While I try to save enough money to be able to go to Germany....or Mexico actually....There is hope Kelly....The State's are just a bit slow and behind the times....(winks)....I won't let RSD own me...even though it never lets me forget I have it....I refuse to let it define me....Still have up and down day's....that just let's me know I'm human....And the pain remind's me that I'm alive........Be kind to yourself Kelly....Respectfully, Diana |
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