Sharon1030 - Some questions if you don't mind? - Reflex Sympathetic Dystrophy Message Board

Soxy · 08-04-2003, 11:43 AM

Hi Sharon! I hope you don't mind me asking you some questions. I know you have had RSD for 17 years or so and I'm wondering how you live with it. What treatments have worked for you? What meds? Are you on meds now? I'm curious and I hope you don't think I'm being too nosy. I'm just wondering what has worked for you in terms of keeping your pain level down. Also, I've forgotten where this monster has affected your body. I'd appreciate any info you could give me. My husband and I are going to the pain doc this Wednesday. I kind of want to grill him on a treatment plan. Frankly, I've had too much input from other docs that don't have the knowledge he does and that has been a setback for me. Anyway, thanks for taking the time. I appreciate it. Take care.
Dianne

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There is always hope....

sharon1030 · 08-04-2003, 07:09 PM

Hi Dianne,

I don't mind your questions at all. They're just really hard to answer because it's been such a long time. I now have RSD in my legs and my left arm.

This started when I was 15 after I broke my left foot. After it healed, it still felt broken and then my leg started to turn purple. That went on for a couple of years, but I guess it wasn't too bad until I hurt my left knee. I went to P.T. for that for a few years and then had surgery and didn't recover from that and nobody knew why. Finally, I went to a doc in Manhattan and he knew right away that I had RSD. Since then, I've had 9 more surgeries on that knee. My doc thought that if we got rid of all mechanical irritants, I would have the best chance of getting rid of the RSD. This was the thinking back then, at least. I had a lot of blocks done. Then, I decided to have a sympathectomy which was a WASTE of time and pain. That was one of the worst surgeries I've ever had and it did absolutely nothing for the RSD and it left me with side-effects, like my left foot doesn't sweat anymore which is horrible because it is extremely dry and cracked. It also made my temperature control system even more out of whack than it was before the sympathectomy. I definitely DO NOT recommend the sympathectomy.

After that, I did more blocks which did nothing. Then I found a new pain doc who put me on a bunch of meds, you know the ones, Neurontin, Zoloft, Paxil, Elavil, Clonopin, Baclofen...none of them really helped. I also had the spinal cord stimulator trial, but that didn't help me either. The one med I stayed on for a few years was M.S. Contin. I was up to taking 600 mgs per day until I decided to have the pump implanted. That is the best thing I have ever done for the RSD. It has helped me so much, not in the pain relief. I feel that the pain is about the same as it was when I was on the oral meds. But, as I have learned since coming off the oral meds, morphine is very depressing to your system. The meds in the pump go directly to the spinal cord and not through the system. After I had the pump implanted and got off the majority of pain meds, I was so much happier. I didn't realize I was depressed until I was happy again. That was my experience with it, anyway.

I hope this helps you. It's hard to remember everything because it's been such a long time. Please feel free to ask anything you want. If I have an answer (or can remember that far back), I'll answer you. Good luck at your doc's appointment.

Sharon

Soxy · 08-05-2003, 09:13 AM

Thanks so much for your help Sharon. You said you have the morphine pump now but I think you said it hasn't helped with the pain??

I can't rememember. What is your pain level now after all these years? I think I need more blocks for my foot. Maybe I need to try other pain meds.

I've only been on the Vic ES. I know my pain doc really pushes the stim but I want to try all and any other options first. I don't even know how he feels about pain meds since he isn't the one who has prescribed them for me. I just don't want to go from the blocks straight to the stim.. I don't know if I'm making sense or not. That's one of the reasons my husband is going with me. I just hope my pain doc and I will be on the same wave length. I really don't want to start searching all over again for another one!!! Thanks again.
Dianne

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There is always hope....

sharon1030 · 08-05-2003, 09:05 PM

Hi Dianne,

I feel like my pain levels are about the same with the pump as they were with the oral meds, but that's probably because I was on a hefty duty amount of meds before the pump. I feel that my pain is at a tolerable level with the pump.

I totally understand what you mean when you say that you want to try more blocks or other meds before you go for the stim. I think that you want to try to get rid of the RSD before you take measures that will help you live with it. I hope that makes sense to you. If I remember correctly, you've had this for about a year, right? I went through a bunch of things before I went the pump route. All that time, I figured I would get better. I would still think that you have time and might want to use that time to try to get rid of the RSD, if possible. I hope you understand what I'm trying to say. Good luck at your doc's appointment. Let us know what he says.

Sharon

Horsie Nutt · 08-06-2003, 08:39 AM

Hey Sharon and Soxy

Man Sharon, you hit the nail on the head when you said that about trying to exhaust all healing options before going on to the ones that just help you live with it. I felt, and still feel, the same way. That's why I don't want to give into the stim or pain pump, I've had this less than 7 months (7 at the most). I still need to fight it, not give in to it.

Soxy, when I was in the hospital having my epidural infusion, my doc mentioned that his new partner has had some remission success by doing a 2 week stim trial. The battery pack can be implanted or not, it's up to the patient. He said, if I am rememboring correctly, that the leads are put in somewhat in the same manner as the epidural catheter is. I go see him tomorrow, so i'll find out more about it. if I can keep the battery pack external, and it's only for 2 weeks, and it might stop my pain and put me into remission, then it would be worth a shot. Right now though, I want another infusion. I did get good relief from the one I just had, and so far it's holding, so I might be a good canidate for this temp stim thing. Maybe it might do the trick for me. Maybe another infusion would. I don't know the answers, yet, but I will try anything to get into remission completely. I feel like I'm half way there, and I'm off to a good start, but I'm stuck in the middle until we do something else, so if I can kick this depression, I'll be doing sooooo much better!

Both of ya'll take care. My hats off to you Sharon, you are one courageous lady!

I'll keep ya'll posted, have to go pay some bills. Yuk!
Cathy