Reflex Sympathetic Dystrophy (RSD)

[tazzwife]

Hey There,

I agree with you; I hate doctors and appointments. I walk away more discourage then when I went in. Your right is nice to get out; but sometime I wonder if the the pain is worth the outing. So far the blocks really aren't working. But block number 7 comes next week. I should get a job as a pin cushion. hahaha You were asking about meds. Have you tried Lyrica? My insurance wont pay for it. But I went to Lyrica.com and they have form on there that you can apply to get Lyrica for free. I've applied but haven't heard back yet. It's just a thought for you. I have always been a daddy's girl so it hit hard with his death. I am so sorry your alone. I'm driving my family crazy I think. This has been so hard on them. I hope you good have a good night. I know you will be hurting bad.

Sam

[dar in pa]

Hi,

Well, I made the two drs. and just couldn't wait to get home--I was literally dragging and exhausted. My niece went with me to help me get a few groceries. I tried to make it into $ General,
but only made one aisle. She completed my shopping for me and then got me a few groceries. I could not even make that store. I was telling her to think just a few years ago, I could start out at
7 AM and go until 9 PM. I just loved shopping and could be gone all day. Now, I told her, I am lucky if I make it from 7 AM to 9 AM. I try to stay upbeat, but it really does get you down.

I did get my dr. to increase the dosage on the percocet and, I do take elavil to help me sleep at night. He give me a script for two a day. I have tried both lyrica and neurontin. They seemed to make my hands and feet swell--and I certainly do not need that for my feet. They are already about twice the size they should be. I also take xanax when I really need it. I have always been a very nervous person, and all of this just makes it worse. I take celexa for depression.

I was really whining when I went to the drs. today--I usually try to be upbeat, but today they saw me at my worst; I was nearly crying from pain and discomfort. Along with the pain I now have eczema on my arm and legs-I am ready to tear my skin off. The nurse said "which is the worse- the itching or the pain?' I think they are comparable.

I will close now, as I must lay down. I am hurting bad--I had to lay down for about an hour when I got home. My feet were throbbing like toothaches. I hope you also have a good night. I really hope I can sleep. Talk to you tomorrow.

Darlene

[tazzwife]

This is my 2nd really bad night in a row. I know I really try to stay upbeat and fun to be around. Man is that hard. But learning to adjust. I'm sorry to hear you had such a bad day. I know I use to go for hours shopping, working, playing and all that stuff. Went and got my pain pump filled and my sons basketball game then I was finished for the day. It's funny that I get so worn out and I 'm tired as hell yet I can't sleep. I hope tomorrow is a better day.

[dar in pa]

Hi there,

I see by the time you posted you cannot sleep also. I know what you mean about being wore out and totally exhausted, yet you cannot sleep.

I did make the night and am trying to get moving now. I had a crying spell just trying to get dressed; as I told you I can barely get my pants on.

Are you satisfied with the pain pump? Just wondering as there are many people with it.

Hope you feel better today.

Darlene

[sammy157]

Hi Darlene,
Wow we have a lot in common! I am so sorry to hear about you mother, as I Know just how you feel!! I lost mine about 4 years ago, and she also was my best friend. To this day I still grieve. I was so lost after her death, and still am! I know she is in a better place, as she suffered from so much pain also. I also live alone, and am so independent, as you are, that I have to learn to stop on those days when I feel "ok".(if ya know what I mean!) We Must learn our limitations..so hard to do, but when we have good days, and over do, we will pay for it the next day! I wish you a Low pain day! So nice to meet you! I hope to chat with you on rsdandyou. I keep missing the chats, I thought it was on Wed. but I guess it is on Mon...I'll get it soon..haha..
Prayers will be going up for you along with all here.
Sammy157..Annie

[tazzwife]

Hi Darlene,

I'm hoping you've had some lower pain days this last couple days. It's been pretty rough couple days but feeling better today. So I can get some things done that I need too. Like most of us we seem to over do it but I do like the feeling of having it done.

On my pain pump - They are very pain to have put in you really have to have a good doc /nurse team to have them get them right. The risk is they don't always work. I'm on number 6 ans I've had 1 1/2 of them work. Not great odds for me, I'm keeping the up in case they will work. Go have to have them replace every 4 to 5 days. So I get number 7 on Monday day. Like i said I don't seem to be responding well and oh hell do I hate the side effects. But Keeping my chin up and going to have a good day;} I hope yours is a good one too.

The thought for the day - Conquer your fears.....Before they conquer you.

[dar in pa]

Hi,

It is nice to chat with you. I have seen your posts to many other letters. Yes, I miss my mother extremely. I wish she were here with me, but as you said, they are in a better place. She, too, suffered for 5 years from first uterine cancer, total hysterectomy in Jan 2000 and then March 2003 the same cancer cells that had been in the uterus were in her lungs. I thought I would lose my mind, those 5 years, watching her suffer. I think at times she dealt with it better than I did. I want her back, but healthy, not sick. Wait for that day when I can see her again.

Yes, I am alone with my cats, which I love dearly. Without them, there would be days that I would not even get out of bed. I have always been used to go,go,go. Worked full time for 30 years and loved to shopped (almost to the point that it was an addiction). Yes, I know we have to know our limitations, but as you know, that is hard to do.

Feel free to talk to me anytime. As I have said on other posts, this has saved my life. Talking to others who know what we are going through really helps & also lets you know we are not alone; as the depression from this horrible disease can really get you down.

I too pray for all of us and all who live with chronic pain.

Peace to you.

Darlene

[dar in pa]

Hi Sam,

Glad you are feeling abit better. I, too, feel a little better right now; the beginning of the week was rough. Of course, those 2 dr. appts. took everything out of me. The sun is out and that really helps. I get so tired of those dark, dreary days.

I have to see orthopedic & vascular drs. in Allentown a week tomorrow about my hips. They want to replace them, as they are both shot; along with having avascular necrosis. I won't let them operate, as I am afraid the RSD will spread. After I get through those appointments, I am going to get an appointment with the pain Dr. I should have been there 2 years ago, but without "good enough insurance" they wouldn't even see me. Isn't that just disgusting!!! This is America--I felt that I was being treated like a 3rd class citizen. I hope #7 works for you.

Take it easy--do not overdo it. Talk to you later.

Peace and prayers to you.
Darlene

[sammy157]

Hi Darlene,
Thanks for the reply. And I do need to talk. my RSD started on in my left foot from a brake, now it is Bilateral. I, just this weekend started to have sever pain in my left knee. I have had two surgery's prior to being DX. with RSD. I know I am going to need another surgery in that knee, but my PM DR. said I should not have Any surgery's. I am scared out of my mind!! I have an appt. on tues. and I guess we will see then. (If I can stand the pain till then) The pain med.s I have are not even touching this knee pain!! I tell ya, I was doing fine last week, after my lido infusion, now this!! If it's not one thing it's another (like Rosanna Dananna use to say..haha) Gotta laugh or I am going to loose my mind!!
Well I hope to catch you on rdsandyou. I still am trying to get that site down. I see some people on it but don't know how to invite them for a chat! (feel real stupid about that :)
Enough of me...I hope you are doing OK, and little pain! Prayers Always.
Sammy157

[dar in pa]

Hi,

Talk anytime you need. I know the feeling with the bilateral. I have had problems with RSD for over 20 years. The first ten were in the left leg; then I had a "slight remission" for about 5 years; but now the last five have been the very worst, as I must have had a "new injury" that I do not know where it came from. I have alot of pain from my waist down. The left leg was the first to go; the right leg is on its way. My knees and feet are a mess. I have the "mirror" image of the left; same exact pain that started in the left is on its way now happening to the right. I dread the pain ahead as it took about 9 months for it to "what I call freeze" completely. Thought I would lose my mind with the pain. I still have pain the left leg but the right is much worse now. Now I am having a problem with exzema (which is also common with RSD); I could just rip my skin off. Had to get a prescription from the dr. for it. My hips are shot and the drs. want to do replacements, but I am not having it done, because from what I hear, the RSD will spread. I certainly do not need anymore pain. I know you are also scared to death when you hear "surgery". Especially when you are alone and really do not have anyone there with you to help you. I know the feeling.

I agree that the oral pain meds. do nothing for the pain. Do the lido infusions help? I need to see a pain management dr. I should have been there over 2 years ago, but when I lost my job I also lost my health insurance and was up the creek without a paddle. The last few years have been horrible.

I hope you are ok right now. Prayers to you also.

Darlene

I get up each day and just ask God to give me strength to get through another day.