I personally know a couple of people with the scs. I have heard from my pain management doctor who also teaches on the scs that it is often better to do early in treatment, but not always the case. One person who is a close friend had the scs put in about six months ago, and it has caused the spread, funny cause the trial she did wonderful with. I also know of someone else in a local support group who was wheel chair bound. Got the scs and is now able to walk. I personally would not get one, but then again my pain is almost non now. I could not take neurontin had a allergic reaction ended up in the er, so therefore will never try lyrica since its a sister drug. Keppra at first which is another med they use off label i used and it worked good. I hope you find what works for you.

Jolene

I hate having to take meds too, but you really, really shouldn't be just trying to deal with the pain. I believe the reason I had spread so fast was because wc wouldn't allow the docs to give me any pain meds. My pain raged out of control. When you let you pain rage on it affects the whole nervous system,sending pain signals to every nerve ending in your body, especially the "good" nerve endings. Your whole system gets the message that your whole body has suffered an injury, thus the more nerve endings affected, the more likely you are to start getting spread elsewhere.

By taking pain meds on a regular basis and keeping the pain under control, well as much as possible anyway, it gives your body a break and may indeed prevent spreading rsd quickly elsewhere in the body at the same time the existing pain keeps getting stronger and stronger.

As much as we hate to have to take any meds, I'd rather keep my nervous system as calm as I can to prevent more problems. It's hard when you feel icky too, but the way I help my body not feel so sick is by taking a half of a pill. I take vicodin 10mg. I'm able to take a whole pill when I first get up and make very sure that I eat something within an hour of taking it. This helps stop any sick feeling I might get. I try to make sure it's some kind of bread, like crackers if nothing else,lightly buttered toast, a sausage biscuit. This helps your stomach to "absorb" the med. Don't drink coffee until about an hour after you've taken your med because the caffeine interferes with absorption and will also make you feel icky. If you take vitamins, wait to take them until a couple of hours later so you get the full benefit of them. When you need to take another dose, break a pill in half. I take mine this way, 1 whole pill when I wake up, 3-4 hrs I take a half, 3-4 hrs,take a half,etc. Those days my pain is up a bit I may take a half 2 hours after but it jumps on top of the pain and I can wait another 3 hrs or so before taking another half.

It works for me and maybe it'll work for you too since we seem to have the same problem. To deal with the constipation aspect, make sure you get more fiber and also a stool softener.

Big Hugs,

Karen

You're such a sweetie!! I did not know all those tricks to taking the meds (why don't they put all that in the patient information insert???). I go in to see my Pain Doc tomorrow. I will mention all of this to him. I still have enough pain meds left over from my surgery with a refill, but if I start taking them regularly, I will run out quickly. I appreciate all your input and suggestions!! Thanks!!

*Big Hugs* They only think of the clinical aspects for meds but not the reality for those of us taking them. LOL Scientists....pfft *rolls eyes* All that is left to us to share with one another and find what works for us. Thank goodness for the internet huh?!! Let us know how it goes after the doc tomorrow if you feel up to it.

Hugs,

Karen

Hi,
I guess I'll throw in my 2 cents worth. and please keep in mind that it is all that it is worth. I'll give you a very brief history...I've had rsd for about 4-5 years, (i've lost track of time). started left foot. had about 8-9 surgeries. sometime during the surgeries rsd came up. I didn't want to hear it, I needed all the infections etc cleared up first. Finally had to agree to rsd. Started pain management. Was pretty well bed bound or in a wheelchair. Went to Georgetown University Hospital in Washington D.C. Saw head of PM dept. He agreed with other PM. Also agreed it was mirrored onto right foot and leg. said that I needed scs (in agreement with other pm). I agreed, had trial. Hurt like anything, after about 3 days in bed and pain I got up and was able to walk with just a cane. It was wonderful. I agreed to the perm unit. I had it implanted, did all that I was suppose to do during recovery and was doing pretty good. The only problem I had was the battery was in my butt. It was hurting quite a bit. after almost a year I need it moved as I couldn't sit, walk, etc. found a dr. here in town (closer, and he had been on the Oprah show), and he agreed to move battery. Turned out that the leads had moved and I needed a complete new unit. No problem. had surgery, 2 weeks later had about 80 staples removed from old surgery removal and new surgery implant, and about a week or so after that started to get very sick. lasted about a week and one night I started pouring pus out of my side where the battery was implanted. into ER. sick as anything. into emergency surgery, where the complete unit was removed again. I was about 24 to 36 hrs from dying from a merser infection. It had moved up my leads and was just at my spine. I ended up in a nursing home because my side had to be opened upand packed and unpacked a couple of times a day. also had a picc line and all this went on even when I went back home for a couple more months. I no longer have anything in me, and I'm back where I started. I also now have rsd in my butt (you know there is a really good joke there), and in my back from my shoulder blades down to where (well, guess). any way. that is my story. All that being said. I STILL would have tried it the first time. It was great for the first time. THe only reason I'm not doing it again is that I'm tired of recovering from surgery. My back, butt, and side looks so scared up. Like you, the meds make me really strange, but I'm willing to live with it if it means I can continue with my life. I have horses, and I'm planning to ride again this spring. I'll never win another show, but I will ride again. With the scs I would never be able to do that again. THe nice thing about the trial is that you can see if you like it. the scs can always be removed if you find out after a while that you can't stand it or if it isn't what you like. If you don't try it, you will live the rest of you life wondering if it could have helped you.

I hope that my story doesn't change your mind about trying it. Anyone going into the hospital could pick up Merser, it had nothing to do with the scs. It was just my luck.

hugs
Mary

Dear Lostmary,

You are an awesome inspiration to the rest of us. Thanks so much for sharing your story with the rest of us.

I sincerely hope that your incisions heal comfortably real soon and that you find relief from your pain.

Someday soon you will have to share pictures of your doxsies!

XOXOX Sandy