rsd and cprs 2
 

i am new to this site! i have had rsd and cprs 2 for 7 years now i am on crutches have benn for 7 years also it has ruined my life i went into a clinic to get a pain shot in my hip and the nurse missed and went into my sciatic nerve and also the medication she used was so strong as like acid ruined my sciatic nerve i felt stabbing shocking pain from my buttocks to my foot and here i am 7 years later and it has spread! i have tried therapy that makes it worse!! tens unit wont use eve again that is to painful i have not sat down for 7 years or laid in a bed i lean over my bed or table so nothing touching my right leg and buttocks and now its in the left leg moving in arms hands! i get about hour of sleep every 2 weeks if i am lucky! i ahte it the pain is unbarable it has hurt my kids i cant do much with them no more my ten year old cant remem me sitting on a couch hugging her playing with her on the floor she was 3 when i happened!no insurance dont get u no where!! i have had my downs with it very depress run down no enery so tired!! and hate watching everyone do things i use to do i cant no more!! i am trying the new treatment called calmare today i am nervous but the doc that is doing it is also doing it for free he wanted to do the stimulator for free but could not get one donaited! but i herd the longer u have had it and the more it has spread have a hard chance of it working! i no its not a guarantee worth a try anything is! my pain mana and specailist that was treating just retired so have no doct right now! very upset about that because i got no warning! so dont no where to go where i can afford but no it dont get easier and the pain gets worse and worse!! this life i have lived for over 7 years is killing me and not fair to my kids or husband but glad my husband has stuck by my side!! anyone who knows of any new treatments medications anything let me know!! i am legally disabled now but of course did not have enough work credits to get on medicare was short 4 hate how that works so trying to get baack on medicaid and also need a doc asap!!

I have talked to several people who have had tremendous success with Calmare. I have also talked many times to the sales rep. The one thing I do know is that if it is done correctly, you should feel relief WHILE he is doing it. It may or may not last but you should definitely feel better during treatment.
My daughter had it done with no success. After researching further, I believe the technician who did it did not administer properly as she never felt any relief. I did speak to Dr D'Amato who seems to be the most trained in RSD/Calmare and intend to see him at some point to get a definitive answer as to whether my daughter would benefit or not. (at this point the ketamine is helping her enough that I am not looking).

I wish you much success today and hope this is the answer to all your suffering. Please post back SOON!! There are so many others who would like to try this treatment if they know it works.

Liz

Kimberly
Welcome to the group. I am sorry your are hurting so much and so often. I'm not sure where you live but there are doc.'s listed on the RSDSA website. This monster gives us all rollercoasters and this is a great place to vent, rant, rave, or what ever your feeling. We are all a family of big support and gentle hugs.
Insurance is a bummer. Definetly retire for Medicaid, sometimes I hear it helps to talk to administers to let them know how high your costs are. Keep us informed and welcome.:welcome_sign:

I am so so so sorry for all that you have had to go through. That really sounds like a horrible situation. We all know how bad this awful condition is and I pray that you are able to find SOMETHING that can give you some relief and quality of life back. Keep fighting and try to stay strong. Everyone here is amazing and we are here for you.

Kimberly,
Welcome to the family. Here we don't bite (not hard anyway). We listen, talk, laugh and understand. This monster we're going through makes life suck for sure and it's nice to have a place like this to come to...

i did try the calmare treatment! i am not sure what to think of it! a doc i know had it brought to his office and had some people run it because it was new to the doc also! the people that ran the machine acted like they new what they were doing but i dont no they never found a spot that did not hurt i constantly felt needles they said when found the right spot if it works it would go away then they would turn the voltage up but it never went away i felt it they said it was low so i felt stupid because they said the machine was turned down low but like the doc said i have had rsd and cprs2 for over 7 years and to touch me hurts so it will be difficult to find the right spots if it works like i said i never felt no relief i felt the needles the whole time different spots felt like being stabbed i did say fine turn it up because they said it was turned down low but it didnt feel good neither but didnt want them to think i was being a boob!! wrong low or not it dont matter be honest try not to push urself threw it like i did because it does no good and i hurt worse for couple days after but i did get my feelings hurt because they kept saying it was low well sorry if have what i have they should not say nothing just trying it should count! so as far as someone running make sure it is someone who knows what they are doing and know how severe ur prob is! like i said earlier i have not sat for over 7 years nothing touches my right buttocks and whole leg and has spread they tried both legs but nothing yet did not find the right spots to put it tried for a hour! i will be going to another place to try it again with doctors who know how to use the machine! it was nice of the doc to bring it in for me and try and he is going to keep the machine but needs to learn how to run it he will let me keep going back but i will try the other place who has been using the machine longer and not have the sales people do it again! i hope the people at the u of u no more on how to use it! so first treatment not good so if anyone tries it go to someone who knows what they are doing!!!!

thank u i am in utah!! tried the calmare for the first time last week not a good experience!!! glad the doctor had the machine brought in so i could try it but someone that knows how to run the machine should be running it!! did not help could not find the right spots! was in more pain and made me feel stupid but no one knows unless they have rsd and cprs2 and cant handle no one touching there legs or bottom i forgot how it feels to sit back and relax or even lay normal instead of leaning over! so run down tired hurt still no docno insurance just also when anyone needs to get a injection in the hip make sure they measure and put the needle in the right spot because it can happen where they miss and stick it in the sciatic nerve and fry it and make sure the medi they inject is not like a acid and its dilutited the right way! the nurse was not suppose to give shots the doc let her i did not no and here i am over 7 years later barly hanging on walked in the clinic that day and could not walk out they were rude! like said it has spread both legs bach ruined from the crutches and falling trying not to use them no insurance yet stupid how they say ur perman disabled even the judge for ssi but have to wait for medicare and medicaid can get but have do more paper work when was on it for 2 years big mess i will be trying the calmare again but with doc at the u of u until this other doc knows how to work the machine!

Kimberly,
Sorry if I sound ill-informed but what is this calmare you're talking about? :confused:

jimbo,
calmare is used to treat cancer pain.

:Thanx: Alt...