I had my new PM doc say the same thing to me when I saw him last month. He asked me what I wanted him to do for me. He said that unless I wanted to try the scs again (I've had 2 and the last one,well long story), there wasn't anything he could do for me. If I just wanted him to give me pain meds for the next 20 years or so, (I corrected him, I told him at least 30 or more....how dare he). he didn't have a problem doing that. Didn't suggest PT or anything. I just found out that my younger sisters' sister in law has had rsd for almost 15 years. I talked to her yesterday and it was great to talk to someone who is a nurse, and knows a lot about rsd. She has a pain pump and has had it for quite a few years and loves it. Because of all my infections, she doesn't recommend it for me just yet, but maybe down the line. I'm resigned to staying on drugs forever. I just think for having to do this that we should at least get some enjoyment out of it. I don't understand why people want these things, they do nothing for me but take the edge off the pain. I just discovered that the toes on my left foot, which is where rsd started have started to curl under now. Oh well, one good thing, I guess my shoe size will get smaller

hugs
Mary

Hi,
I had my scs for 3 years. I still needed to take meds. I fell a couple of times ande the lead sliped out and sat on a nerve. I havenever felt so much pain in my back. In my opinion if the scs worked so well, i would not had yo go on such high doses of oxycodone and meth.


Sue K

Well may i ask who is your pain doctor now here in Buffalo. That would help me in telling you who i would recommend.

Jolene

Hi lostmary,

I'm think we written to each other maybe once before. I have full body rsd 12 years. It started in left arm/shoulder. Through pt, got full use of my shoulder (range of motion) back moved to other shoulder, then more pt and got full range of motion again in that shoulder. With a water skiing injury to left hand, finger froze up and finally got a rsd diagnosis 4-5 years late. didn't get the full use of fingers back, but good enough to dress myself , cut my foot etc. About a year or so ago, my toes started curling, but the other direction off the floor upwards. My Dr. Neuro. gave my dailey exercises to do. and believe me I did them dailey warm bath water. warm swimming pool . After a few months , my toes were back touching the ground. I constantly check them, by running a piece of paper under the toes to see if there is any space. space is not good. Both feet touch the ground and I will do eveything to keep it that way. I really want to stay mobile and out of wheelchair if at all possible. I continue to use squeeze softie balls for my hands too. I even stretch and make sure my shoulder blades don't start to turn in. Ask you pt or Dr. what exercises to do, because if you don't exercise and stretch, they will just keep curling until you can't walk. I find a warm bath in the morning with stretching and massaging your feet is really good for them, wearing warm socks in the wintertime. A good massage therapist or reflexology really does wonders. Please don't give up. My Dr. has already told me I won't get off pain meds. But I'm determined to not go higher. I was actually going a little lower until one of our best friends' son died from a car accident. Was in a flare for a few months and added some meds and now off of them. Our daughters were close and we traveled together, annual coast trips, annual snow ski trips,
After our daughter was born, they were to raise her is something happened to my husband and me. Our hearts still hurt, they are coming to visit this summer.

Please don't give up on your toes. If you need any more suggestions just ask, I see my Dr. in a couple weeks.Take care, Loretta I just hate it when Drs. try to get rid of us, because they are interested enough to do research and step up to really make a difference. My Dr. is always wanting to read more and research more. Is already involved with trials. getting HBOT in his new clinics. I'm so excited to try it. Soft hugs Loretta

Loretta,

You are so right, sometimes we just have to take care of ourselves and to heck with the docs. I'll stay with this guy, even tho he will only write the percs for one month, and will see me every 3 months. The other 2 months inbetween I call in for refills and he charges an office fee of 15 dollars so you can pick up the script. He doesn't see you or anything. just come in and pick it up at the window. did your dr have to rub you toes to relax the flat after soaking them? I think I might be able to do that. My toes don't like to be touched, but I could work with them some. When hubby saw them the first thing he said was, well guess we've got to get you up on your horses pretty soon. how sweet.

Hugs
Mary

Dear lostmary,

I think it is awful that your doctor charges you a fee for a script!! It is nice that he will write it for you without an office visit, but still - most of us have been through quite a bit, aren't really well off, and have been patients for a long time. Isn't that enough?

I sincerely hope that your toes relax soon, and that you do get to go riding. I think most of us on the east coast from the middle of the country and up are in for several days of nasty cold wet yucky weather soon, hopefully you are far enough south that it won't bother you!!

XOXOXOX Sandy

Just an FYI for anyone.....by law docs can't do refills on perc. It has to be written out every month. The only med that you can write out and put refills on is vicodin. The office fee thing to pick up a scrip happens elsewhere. My uncle and my hubby's boss both went to the same doc for pain meds and he'd only see them every 3 months as well and charges a $15 office fee when they come pick up the perc scrip for the month. It seems ridiculous to charge money like that but anything to make money I guess. LOL That's the way it seems to me anyway. My doc has told me that when I switch over to taking perc that I'll have to come in every month instead of every 3 like I do now. I'm going to put that off as long as possible considering that will hurt me financially big time paying $95 a month on top of my meds.

Hugs,

Karen