Ok a quick question for you all,

As you know i have been put through the ringer to try and get my RSD in remmission or at least lessen the pain adn everytihng so far has been temporary. From what my doc said 2 weeks ago after he did the temp sympathectomy that he is going to take one of the 2 leads that are up my spine nad put it down along my sciatic nerve to get my stim to try and cover my foot! I am scared about that surg and what it all entails bc of him running it along one of the largest nerves in the body...?? and how he is going to be able to get to the sciatic nerve?? cut through all the butt i have..lmao iknow i might have a lot there , but ..lol

So the question i have is that what else can they do if this doenst wrk? And i know that some of you have had it for over many many years, what do they do with you? He wont give me the pain pump unless its the dead last thing to do bc of my age. but if thats all that will help with the pain and i have to live with this rsd all my life now?? i am just geting frustrated with being cooped up and not being able to do what every 25 yo is out there doing!

So, what have they done to help you i guesss cope with the chronic pain that nothing will help and any other treatments that i havent had??

Thank you soo mcuh! love you guys!!

:angel:
Bryn

Bryn, I don't have any answers for you. I wish I did. I just wanted you to know that even though I haven't been around I have been praying for you and my other RSD friends every day. You have been through so much. My heart aches for you. I hope and pray that what ever the docs do will finally bring you some relief.
Dianne

Bryn,

I tell ya, I wish I could wave a magic wand over your Leg and foot and help you.

I wonder if they weed the wire down through like they do in your spine.

Maybe the pain pump is the only way you are going to get any relief if the new lead dosn't work. I would tell my dr. I might be young but right now I would rather have a quality life then worry about my age. no one should have to suffer as bad as you have been.

I know when my dr. mentioned the scs my neuro said you are just a baby yet and I wouldn't recomend it. I knew that I had to do it for my own quality of life.

I really hope they can find something that works for you. You are always in my prayers.

Friends are angels who lift us up to our feet when our wings have trouble remembering to fly.

((((Gentle Hugs))))
cattys

Bryn ... my heart goes out to you. It must be awful for you. I have two suggestions. First let me tell you that here in the UK they are doing research into the lack of oxygen in the cells of those with RSD, and also free radicals. They are giving doses of VitC for the free radicals, and hyperbaric oxygen therapy for the oxygen. The HBOT as it is called is what is given to divers who have the bends, and we have a few centres here in the UK who offer treatment to MS and RSD sufferers. One young girl in her twenties here has a second hand machine in her garage, and uses it each day. Last year she came to the conference in a wheel chair. This year she was walking!! Now it doesn't work for everyone, of course, but if there was an HBOT centre near you it is worth exploring. Perhaps some of the others might like to think about it too. The Vit C is easy to buy over the counter, but if you decide to try it check with your doctor as to the dose.
Best of luck,
Edna xx

Thank you all for helping me!

Its just getting frustrating like I said and I dont know what i would do with out you all!!

MY doc also suggested that I start seeing a psych? I dont knw why, Im not depressed at all.. maybe hes send ing me there to help maybe cope with haveing RSD for life now and not getting back to wrk??

Gota get something for supper.. TTYL

:angel:
Bryn

Hi Brynn! :wave:

I'm so sorry you have to suffer so much at such a young age! :(

I have no idea about the things you asked about....have you done Physical Therapy? I know your foot has atrophied, and you almost broke it, right? Can you go somewhere that has Aquatherapy in a pool maybe? Joey likes that.

It's so depressing to think of living the rest of our lives like this......I've heard RSD'ers have a high suicide rate, and I can certainly see why! It's just not fair at all.

I thought you had a Psych Dr? I thought it was assumed that everyone with this Monster, or ANY Chronic Pain disease, automatically suffers depression??? Plus the Anti-Depressants help with the nerve pain? You MUST be depressed and you don't realize it.....after all, you ARE mourning the loss of your healthy 25yr old life, and the prospect of having this pain endlessly! I think it's a good idea to go....do you have anxiety too? Joey has been SO anxiety ridden, but I've weaned him off alot of the drugs that were contributing to that....just today I lowered him from 600 mg to 300 of Neurontin, which I absolutely hate for making him such a Zombie! :eek:

Good luck with all this....you've had such a hard time, you really deserve a break, as we all do! http://www.healthboards.com/ubb/bigcry.gif

~Ange~ http://www.healthboards.com/ubb/cool.gif

Hi Bryn,

That "you're too young" stuff doesn't go far with me. I hate when they use any age (young or old) as an excuse. HATE IT. As you know, I'm also young and have had this since I was 15. I had the sympathectomy at 19 and the morphine pump was finally implanted at 30. I think it's far better to be getting the meds directly to the spinal canal than it is to be taking them orally and going throughout the system. There are FAR fewer side effects with the pump because the meds aren't systemic. They just go to the "source." You need much less of the meds than you do if you take them orally. So what if you have to have the pump changed every 2-5 years? Hey, if you're ever lucky enough to get rid of the RSD, they can always take the pump out. I really don't get why docs use age. It's not like you're a little kid. Maybe then they'd have a point. I just don't get why your doc would hesitate to put the pump in if you've tried everything else and nothing worked. Good luck.

Sharon :)

Hi Bryn,
I was getting on just to see if you had posted. Because I had not heard from you in a while. My heart goes out to you also. You are to young for all this. That STS is working for me. My pain is much better in just 4 weeks. I don't know how to get you to the website so you can find a theraphy place in your area that does it if you did want to try it. It sure can't hurt. I am so sorry you have this so badly. God bless you. Lori

Hi Bryn, sorry you're at wits end here. Have you tried seriously changing your diet? You got nothing to lose by trying, right? The docs discouraged me from thinking that might be it too, but I had nothing to lose; and now I'm better. Go for it. If it isn't a veggie, meat, fruit or legume don't eat it. Try it for three months and see if you feel better. My thoughts and prayers are with you and all here.