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RSD Intro's : Hi. I'm new and have questions
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 Message 1 of 7 in Discussion 
From: MSN Nicknametart_girl  (Original Message)Sent: 5/14/2005 12:26 AM
Hi,
I'm Elizabeth. I was tentatively diagnosed with RSD a little over two years ago. Recently I started working with a great doc who confirmed I do have RSD/CRPS. I just had my second series of nerve blocks with little success. The doctor now wants to do a spinal stimulator trial. I'm very nervous about moving forward. If anyone has experience w/ this treatment, I'd love to hear about it (good and bad). I've sort of put the breaks on all the aggressive treatment (the stimulator and methadone) so I can try some alternative treatment (accupunture, deep tissue, etc.). Again, if anyone has any war stories from going the alternative route, I'd love to hear about it.

I'm happy to have found this group. Though I have a great network of friends and family, this disease makes me feel very lonely. I don't think anyone can fully get his/her head around it unless he/she is living w/ RSD. Thanks everyone.


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 Message 2 of 7 in Discussion 
From: MSN Nicknameannie57011Sent: 5/19/2005 4:42 PM
Welcome too the group!!!!!! Glad you found us here. There are so many people with RSD it is a crying shame!!!! It is hard to be lonely,, I have been there n know that feeling too hate also.. Give me a shout online if you have msn messenger,,, When I am online,,, I will be happy too talk too you anytime..  [email protected], I am usually around alot.. I have been in hospital again. Being sick for last couple of weeks.. Going too dr. again in morning. That is another feeling that really gets to be hated also.. REALLY FAST.. I have saw  enufff  drs. this past yr.. I have my tummy full of them... They can keep us running like we be crazzy at times.. My dr. told me that she is at wits end too know what to do ... At least some drs. can also be totally honest... That counts for alot.. Any help ,,, let me know also,,,  will do all I can ,,, any information,,, the boards are filled with alot... I will do all I can too help... annie The stimulators,, can help,,, I have used some,, the meds. can be as bad as the treatments tho period.. Somethings works for some.. We are all different,,, each treatment works different.. The blocks can help,, they slowed spread of it down alot.. So good luck,,, U have too determine,, what is right n wrong for you in each step... Best I can say is,,, Make sure U have a good therapist,,, n one that will research for help in fighting RSD,,,,,, mine did,,, what drs. wanted to do ,,,, was slowed down n some things were turned around for me... Hope this helps... PRAYERS to you n for treatment,, n decisions... Annie

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 Message 3 of 7 in Discussion 
From: MSN Nicknameannie57011Sent: 6/24/2005 5:38 PM

Hello  {{{{{{{{ ELIZABETH }}}}}}}}}} Welcome,,,, I am truly sorry I have not gotten back too you sooner..  I have  the beast we hate soo dearly,, I am afraid what the drs. Are going too tell me Monday,, when I go back.. I have been having to go to dr. office n Er for last two months for shots each day. Of antibotics n pain shots both... I had some kind of flare,, about  6 weeks after my surgery ,,,,, that gotten infected,,, they were scared,,, with good reason,,,,,,, that the infection would go into the cut where they had went in.. Sure did not want to have to start over... No way,,, surgery for morphine pump... Drs. have not said,, yet that is flare,,, Sure looks like it tho... My flares goes into open wounds.. With this ,,, I was running low grade fevers.... That one was first for me....  but worst part is that is on my tummy!!!!!!!!!!!  It may have started spreading again,,,, I am not anxious for the blocks again.. Tho I have had this beast now for 6 yrs..  I am blessed since I do not have feelings below the belly button,,, SO that is good.. But Still,,,, I do know when flares are coming,, if I pay attention,,, SURE glad U have found a dr. who knows what is going on,, n willing too treat u rite. That is soo important for this.. Sooner that treatment is started,, better rsd respondes....Sooner we get relief.. Pain seems too get out of control,,, it sure is hard too get back under control.. The pump seems to be working for me.. That is finally a biggg relief for me.... I am seeming to be responding too other meds now finally also...   you certainly are blessed that the dr. seems too know what he is doing ,,, n found one sooo quickly,,, some of us has been thru dr. office after office,,, That is hardest for us too deal with.......                            We sure need understanding with all of the changes that we have to go thru in life styles,, n family situations..   most of time,,, we have went too long too try too alternative meds,, tho some of the natural ways,, can still work for us,, I do some of the naturals for the side affects of medicines that has upon us... I certainly do hope they can work for you... WITH ALL OF MY HEART!!!!!!   I still wonder what is worst,, pain n all the horrors of medicines  or the side affects of...  They certainlly are hard on our bodies.... With the fever I have had thru this,, It certainly left me feeling tired n hurting... The worst I have had,,, ever,,,, But the weather is not cooperating at all.... NONE........... Let us know how you are doing,,, if you have msn messenger,,, add me ,, [email protected]  Be happy too chat with you  any time... 


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 Message 4 of 7 in Discussion 
From: MSN NicknamemggoneSent: 2/10/2006 9:27 PM
hi,
i don't know if you have had the surgery for the stimulator or not. i have one the problems i have are sleeping with it on it is easier to sleep with it off. it is hard to lay down on the side the battery is on. my mind is muddled all the time.it is hard for me to get my leg to do what i tell it to i fall alot. the best for last since i have it for my back and entire left leg i can not feel when i have to go to the bathroom. oh and my back got a hundred times worse since the surgery. rsd can get worse or move after any surgery because surgery is considered trama. that was told to me after my surgery lucky me

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 Message 5 of 7 in Discussion 
From: MSN Nickname11robinwaySent: 2/15/2006 5:35 PM
Hello! I have been diagnosed for almost 2 years. I have tried the spinal stim. It didn't work well enough to keep. I have RSD in both my hands and the trial was only for one hand. The time in the operating room was the worst for me. The drs. yelling, "This is dangerous!" and "groan" as they seemed to jump on my back! They did have a hard time getting it up far enough into my neck. I have had a fusion-to fix the pain in my hands(before I was diagnosed.) I would do it all again though for the chance to have no pain in my hands. I am now trying the varieties of meds. Cymbalta is the latest one with results. Good Luck! Let us know how it goes.

Has anyone heard/tried STS? Systemic Therapy System. I have read very positive results about this but can't find anyone in my area.

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 Message 6 of 7 in Discussion 
From: FranknberrieSent: 2/16/2006 4:13 PM
Hello Elizabeth, I have had CRPS II for almost 6 years now, like most others it wasnt diagnosed right away nor treated. The result of the 2 1/2 year delay caused lots of anxiety,depression and the diseaase spread from the hand it started in to both arms,shoulders and mid back. Late last year I injured my right knee..you guessed it, now I have full body RSD. Last year was the worst for me, my wife of 10 years couldnt take having a sick husband and left me to fend for myself. I was a wonderful husband and provider, because I had many days I could not keep up or help with everything I was too much of a burden for her.Since all of this happened I ended up in a Psychcare hospital and then followed up with outpatient care for a year now, that has helped more than anything.
 As for a spinal cord stimulator, I have heard lots of bad and very little good,since a surgury triggered my RSD my decision was easy...no more cutting on me, my arms n hands have had 7 nerve surgury's....number 6 triggered the disease and 7 made it worse. What I would do if I were you I would ask your Dr for names of patients who he has implanted with this device and then ask them, ask as many people as you need to help you decide. If you would like to talk more to me contact me directly  at [email protected]
Good luck and god bless
Frank

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 Message 7 of 7 in Discussion 
From: connieSent: 4/7/2007 10:16 PM
Hi Elizabeth
  I've had the spinal cord unit had for 2 yrs.  Then for some reason it stopped working. They checked it out and found part of was dead so they were going to replace it but with the morphine pump cause my pain had spread more  and my cerveral area could handle another machine.  Also 3 days after they looked at it I went into seizures.  I also did accunture before I got real bad  that would work on the trigger points for a few hours. I now have had my pump 2 years  and very happy with it.
love and hugs
 
Connie

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