Lobelsteve~~~

[RSD_Angel]

Hey there, I moved your post or well copied it because i think you are asking great questions and dont want it to be lost on my thread of my pics. here is what he posted on my thread..

Ouch.

I am wondering what all of you have tried to do to get rid of the RSD (CRPS).
I am an implanter and would love to hear about if/when/what level/what company/doctor/etc you have tried as far as SCS. Has anyone tried Prialt.
I am interested in seeing if Prialt can be tried as an outpatient without having to put a pump inside the body to see if the drug works. Also, is this the well-adjusted to RSD thread? Many of my patients just do not want to accept the RSD or cannot come to grips with it. I use a variety of clinical psychologists to help them understand the nature of this chronic pain syndrome and to try and get them benefit more than my drugs, wires, and needles. Wa there a turning point for all of you when the diagnosis just kind of clicked in and you were like- I guess this is now me? Thanks in advance.

Steve

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Now to answer your questions from my point and what i have gone through. I have had RSD in my foot, ankle and lower leg for 4 years going on 5 now, and it has spread up my leg and in to my lower back and into the "good" thigh. I have tried everything from spinal blocks to trial radio ablation therapy, and even botox treatments and oral meds too.. all to no avail!! like the majority of us on here.

I have 2 stim's implanted and think that i am the only one on this board and prob wont find alot of us out there. I have a SCS and a PNS (peripheral nerve stim). The PNS is implanted in my RSD upper outter thigh (generator) and the wires and leads are connected to my sciatic nerve. I had the SCS implanted in 2/03 and the PNS 6/04. Both stopped working about 4-6 mos after the permanent surgery was done. They are both medtronic stims and done by a doctor in upstate NY. If you want his name i would be more then glad to give it to you .. just Private message me. I love this doc and he said that if i waited 2-3 mos to see him, i would have lost my leg any how. He has tried since then to try and get me in to remission, but... nothing yet.. I am getting the pain pump at the end of Jan or begining of Feb. I was diagnosed with RSD in October of 2002 after a foot surgery for a mortons neuroma in september of 02. Was bounced around and finally took it into my own hands and found my current doc. I saw him the end of jan of 03 and was admitted for a week long epidrual infusion (which is heaven, but **** to come off from when it doesnt work) and then the next week i was having the scs surgey.

I have never heard of Piralt being used.. How does it work for us???

Now on to the bigger question that you asked... when was the turning point that i accepted it was "me". I think it was when i was in PT and they were trying to "flatten" out my foot my putting me in a heated pool and stepping on it with their feet and it not budging. yes if freekin killed me and that was when i was told to grin and bear it... welll i told them where to stick it after they finnaly stopped trying to get it flat and siad well.. grrr.. After that i was just in misery and thinking that if PT cant get it, meds dont.. and i had, had 2 spinal blcoks then, that i was stuck with this and wont get any better.. and accepted it and FOUGHT hard for any and all treatment. I wanted and thought i had to try everything out there , bc you never know what will and what wont work adn i wasnt gonna let one stone be unturned, and always have that thought that if i did that.. could i have been better and not be in the spot i am now. And in some cases the insurance companies demand that you try the less invasive before you go to the invasive or the "expirimental" be fore they pay.. and we as RSD'ers dont have money to spare!!

I have found that this board and Nero talk has been my saving grace and THANK everyone for helping me cope with this. We are a family here adn thats what we all need, and our home families have no clue what pain we are in.. we might tell them but they have no clue, but when i come here and post and talk about my pain i know that the others on here know exaclty what pain i am in and how i feel adn know what to saw with out me thinking that they are just trying to make me feel better and not really caring.. not saying that my familiy doesnt care they do and they have helped TREMENDOUSLY adn woudlnt be where i am now with out them... but they have no clue, that i might have a smile on my face or laugh at the tv or walk around one store.. but that i am in horrible pain and just not letting it show bc i dont want to ruine the day or event or .. ya know..

I never went to a psycholist at all. I only saw one before my stims' to give me clerence for surgery. My doc was there for me and told me like it was and said no **** we are gonna fight this and you have to be in the team to fight it or else there is no point.. my doc is wonderfull.... i can see him and cry at the appt and him tell me to stopp and its not worth giving the RSD that power! He knows the pain too.. he had RSD too, not severe, but he had it and was able to be put into remision and he was a plain anesthisiolgist but after going thrgouh RSD, he studied for PM!! You have to ahve a great doc that understands you and treats you for you and doesnt pass the buck and say well you have to see.. this doc bc you are depressed... and this one bc have to deal with the pain... its a trust that you ahve to build with the doc.. i think thats what i have and is getting me through.... trust in my doc!!

Ok.. now that i typed out a long page.. i will stopp.. but if you need any more info let me know!!

Thanks agian for wanting to find out more info for your patients.. tel them to hop on here !! we love newbies !!
~~Amber

PS.. I havent been able to work since my foot surgey in 2002!! thank god for parents and then SSD finnally!!

[Duchess]

Hi
First off let me say I'm from South Africa and RSD is not well researched in this country. I've been to many doctors, OS, neurologists, our Pain Clinic, and I'm sure the information I was given was either from the internet or from conferences.

I had bilateral Carpal Tunnel Surgery done February 2005 and 3 weeks later I was diagnosed with RSD which has spread through my entire body. I was on Neurontin, Trepaline, Temgesic, Tramal, Tramasett, Lentogesic and hosts of other medication to help me. I got worse to the point where I couldn't bath or shower because the water hurt like ****. I went back to the Pain Clinic and they changed my medication to something else, I can't remember the name. I'm sure some of the medication in this country is different to US.

Anyway, I was off work for 18 months, apart from 23 May 2005 to 4 August 2005. I went back to work those months and did more harm than good. BUT! what I have to say is this.......all this time I was not stressed by my employer. In fact every time I tried to go to work I was not allowed to sit at my desk until my team leader and manager said it was ok. And every time it wasn't ok with them so they sent me packing back to the doctor.
Eventually in October this year, my employer agreed to let me take Ill Health Retirement.

Now I've read a lot on this forum and I swear that stress plays a huge factor. When I was stressing about going back to work I got worse. It was my team leader and manager who kept telling me not to worry and stress as it would only make things work and not to worry about work because it's not my fault.
I went off all medication because I felt it wasn't helping me and with the doctors here there wasn't any other alternative. They didn't suggest and stimulators or anything. I also have a very strong pain threshold. I'm not saying I am pain free because I'm most certainly not. I'm saying that just lying and relaxing and not worrying about anything most certainly does help. Being able to sleep when you like is also a huge factor, because as you all know fatigue plays a huge roll with RSD.

People on this forum seem to be stressed because of work. I don't think it's possible to continue working if you have RSD. It only adds to ones stress levels and the sooner one changes their mind set the better for them. It's hard I know because money is now less. But!!! Which is it to be? Your health or knowing that you have to go to work because the employer is going to be on your back.

Perhaps my story can help?

[mdclark]

My wife is to try the Prialt after the first of the year. She will have to be titrated down on her pump (morphine/clonidine) and switch to oral meds till she is off the pump. Then the Prialt will be filled. It will have to be changed after 14 days to make sure the pump is coated(?), then slowly adjust the Prialt up as they wean her off the morphine.

[HopeLivesHere]

to hear more about how the Prialt works out.

I had RSD in one limb. In one year it spread over to the other and then to
all 4 extremities.
Worker's compensation not only denied all care and medications to one, then two extremities, but when they denied care for any and everything, I knew then it was going to be with me for life, barring a miracle, which I do believe in.

When I was desperate, in horrific pain, unable to care for myself, cook or drive, and there was no one who would help me except for my wonderful doctor, I HAD to come to terms with this.
A psychiatrist I went to wrote that I was angry and blamed the spread RSD on worker's comp. Well, yes, I AM frustrated (not really angry tho) & we will never know if I could have been put into remission if I could have had the therapy I needed. I agree with Duchess that stress plays a big role in this disease. Not so much the stress of pain that is being medicated, but the outside stresses of lawyers, workers comp and the worst is the mis-information in my records. I had gone from the dark hairy arm to an atrophied arm with NO hair. The doctor documented there was no changes in hair growth. I had blue arms with dark purple bruises and the doc said I had no color changes. But I have pictures with dates on them. When I couldn't grasp that thingy or move my fingers, he said I was faking !!!

Sorry I got off topic, but I did write when & how I came to terms that this monster will or may be with me for life.
I do feel blessed I didn't have it sooner in my life though. I like to look on the bright side of things.

Hope
Yes, Duchess, your story helps a lot, thanks :)