Reflex Sympathetic Dystrophy (RSD)

[winchestergirl]

I have been suffering from RSD for about 5 years now. Lately however the pain has been extreme, more than it has ever been in years. I am left in tears daily from the constant pain in my leg and foot all resulting from a work related injury that led to surgery upon surgery then the diagnosis of RSD I have injections done, and am on two different pain medications trying to eleviate the pain, but still no relief. Is anyone else in the same boat I am with pain, and wondering where to turn? I have an incredible doctor who is there whenever I need a consult or to talk, but now....now the pain is unbearable. I guess what I am trying to ask is, is there others out there that feel like I do with pain, and what do you do to combat it? Thank you to any and all replies.

[isabellebichone]

You have to do what works best for you. Everyone is different. However, I believe it's a good idea to have someone ( in addition to your doctor) who can help you keep track of the heavy pain medication. I'm in physical therapy now and consequently have went up to a stronger pain medication (time released oxycotin). This only dulls the pain for me on my bad days. I'm hopeful things will be different when the PT has had time to be effective, although I've going for nearly two months now. Have you tried PT?

[dennyfan]

For over two monthes now I have been in the same situation as you are. Most days (had maybe 3 good ones) I am constantly trying to fight my pain level. I also have a great doctor but today I wanted to cry after a very bad weekend I called to try to get in to see him today only to be told he is out of the office on vacation for two weeks. I wish I had some words of wisdom to help you. I have only been living with the pain for 21 monthes and a diagnosis took longer than that. I just got done trying a tens unit for over a month that didn't bring any relief and they released me from occupational therapy also saying there was nothing else that could be done for me. It really is so difficult sometimes to find something that works to help relieve the pain. One thing I am sure of is when my doctor gets back we are probably going to have to try some different pain medication. I tried a couple back in September. Oxycontin didn't last long enough and made feel wierd (best description) and demerol made me very sick. I just hope we have other options. I hope you find some relief soon. Until then know you are not alone.

[winchestergirl]

You have to do what works best for you. Everyone is different. However, I believe it's a good idea to have someone ( in addition to your doctor) who can help you keep track of the heavy pain medication. I'm in physical therapy now and consequently have went up to a stronger pain medication (time released oxycotin). This only dulls the pain for me on my bad days. I'm hopeful things will be different when the PT has had time to be effective, although I've going for nearly two months now. Have you tried PT?

I have tried PT after intial surgeries, but with the progression and nerve damage my doctor doesn't feel it is an option for relief. Currently my meds include Ultram and Percocet, both pretty much having no effect on relief. I will take your advice to heart about having a third person involved for medication. Thanks so much for your reply!

[winchestergirl]

For over two monthes now I have been in the same situation as you are. Most days (had maybe 3 good ones) I am constantly trying to fight my pain level. I also have a great doctor but today I wanted to cry after a very bad weekend I called to try to get in to see him today only to be told he is out of the office on vacation for two weeks. I wish I had some words of wisdom to help you. I have only been living with the pain for 21 monthes and a diagnosis took longer than that. I just got done trying a tens unit for over a month that didn't bring any relief and they released me from occupational therapy also saying there was nothing else that could be done for me. It really is so difficult sometimes to find something that works to help relieve the pain. One thing I am sure of is when my doctor gets back we are probably going to have to try some different pain medication. I tried a couple back in September. Oxycontin didn't last long enough and made feel wierd (best description) and demerol made me very sick. I just hope we have other options. I hope you find some relief soon. Until then know you are not alone.

Thanks for your response, It helps to know that I am not the only one out there that is in tears most days. Sometimes it feels as though my loved ones think that I am exaggerating with the pain, but if they could see the look of my leg and foot and the signs of skin changes, maybe they would get it.

I'm sorry that you are in the same boat as me, and I hope that when your doctor returns that you are able to work together to find some kind of medication regimen that can be beneficial. Please, keep me informed of your progress....and you too know that you aren't alone in this fight.

[Lily]

i tried to email you earlier but but computer went down i dont know if you recieve the first one or not . i just wanted to tell you i'm going through thre same thing. i stay in consant severe pain even with pain meds. i had a spinal fusion 1 year ago this month. i now have rsd in my left leg and foot my foot stays black which has ruined my life. i have to walk with a cane cause i fall now. at the age of 36. i used to be very active and work everyday. i'm married with 2 kids and it has put alot stress on them i know.i can't do anything i need to. i have know one to talk to anymore. i don't talk to my family and friends about this i know they're sick of hearing it. i saw your were from winchester. i live in winchester,TN . i hope we can keep in touch maybe we can help each other through this. hope you feel better soon. GOD Bless You! Lorie

[dennyfan]

Lori, I am so sorry you feel you have no one to turn too. You & i are about the same age (i'm 37). One of the only people I feel who really tries to understand me & help me is my son & he left for college last September. Sunday all of sudden I felt really achy, tired & feverish. My fever was 101.5 & my husband let me cook dinner and clean up all the dishes. He never once offered a helping hand. I had laundry going too & had fallen asleep on the couch after dinner. When I woke up I asked him if he had checked the dryer. All he had done was open the door so it wouldnt continue to buzz. This leaves the light on & is bad for my dryer. I got so mad. The stuff in there was mostly his & was still wet. Sometimes I just want to run for the hills & never be seen again. I wish I could find an RSD support group here but I live in a fairly rural area. The message boards I belong to have been a God send. I don't know what I would do without people like you and others I have met and become friends with. You do have people to turn to. I don't know how we can get eachother our email addresses but I would be happy to send you mine if you want to chat more. Thank you for letting me vent I really needed it.
Denny

[winchestergirl]

i tried to email you earlier but but computer went down i dont know if you recieve the first one or not . i just wanted to tell you i'm going through thre same thing. i stay in consant severe pain even with pain meds. i had a spinal fusion 1 year ago this month. i now have rsd in my left leg and foot my foot stays black which has ruined my life. i have to walk with a cane cause i fall now. at the age of 36. i used to be very active and work everyday. i'm married with 2 kids and it has put alot stress on them i know.i can't do anything i need to. i have know one to talk to anymore. i don't talk to my family and friends about this i know they're sick of hearing it. i saw your were from winchester. i live in winchester,TN . i hope we can keep in touch maybe we can help each other through this. hope you feel better soon. GOD Bless You! Lorie

Lori,
Thanks so much for your note, and my heart aches for you. My RSD is actually in my left leg and foot, and the pain was so intense today that it radiated into my hip and made tears come to my eyes. I don't think anyone truly understands the severity until they go through it as well. I am happy I stumbled upon this board, and I hope as well we can keep in touch and be support for one another.

Oh, and the Winchester part of my name.....is actually a reference from my favorite television show Supernatural....the two brother's last names on the show is "Winchester". I am from Pennsylvania. But still what a coincidence that there is a Winchester, TN and that you live there!

Let's make it a point to keep one another updated on our days and pain....and encourage one another that we can make it through this.

Be well!

Jenn :)

[okiebutterfly]

Hello everyone! I read these posts and it did my heart and soul good. I have been in tears for the past two weeks because of the pain. It doesn't take much to set the tears off. I know how you feel on the "no one understands", I feel that way everyday with everyone that I come in contact with, mostly family.
My RSD in in my left foot and is "taking" my leg now. I don't know how else to describe that either. My calf muscle literally hangs from my shin bone. My foot is calico. lol I too have found a great doctor that is willing to be there, especially listen. I try not to complain much at home about the pain because that is all I am afraid will come out of my mouth. I have finally started to write in a cheap tablet. That does help. I get to vent and say what ever I want in it and not have to worry about offending anyone. lol
I had my second "Lower Lumbar sympathic block" on Monday and it was unsuccussful. The first one that I had, the numbing meds hadn't set in when he inserted the needle. I was crying and asking God to lift me up from the pain. I knew that I couldnt move. It was horrible. The second block was a good experience I guess. No pain. I had talked to my Dr. about what had happened and he made sure I was comfortable.
They changed my pain meds from Ultram to Lortab. I dont like it. I feel goofy and not myself. I miss being me. I feel lopsided and I am trying hard to find a happy medium. I can tell when it is wearing off, and the pain, my gosh.... I hate this pain....
Hang in there. I know that sounds like an empty comment, but it is the truth. All we have is hope and hanging in there to offer courage and strength to eachother...

Christy

[crcourage]

hi there!

i have had RSD for over 13 years in my left leg. if you are thinking of therapy, the type of therapy to try would be what they do for people with nerve injuries/ damage. it is completely different from the traditional therapy(used for building strength, etc) I was diagnosed at around 22-23 yrs old. I had an old knee injury i had to have corrected(my knee would dislocate). i am not on any pain meds, nerve blockers, etc. i get the occasional cortisone shot, but that is few and far between.

i feel i was very lucky, as when i was diagnosed, it was before internet,info packets, etc. i happend to have a gen prac who recognized my symptoms and had a hunch that rsd was what i had. he then sent me to a orthoped that was very knowledgeable with it. he then sent me to a therapist who had experience with this kind of thing. when i had finally seen them, i was entering stage 3. i had very little blood flow in my leg(the skin color was bluish green, and dark purple). first thing he did, was had me get off meds(i know you are thinking he must be mad...i did too). he sent me to the therapist with the arrangement that if it did not work, then we would start pain mgmt. i went, it was one of the hardest things i ever did, and it did help me. within a month or so, i had improved significantly. i am now able to do pretty much whatever i want. i only recently started to show a little sign, after i had hurt my knee again(i tore the outside muscle and tendon from knee to hip). the signs are very minimal. i am only seeing a patch of lividity marks on the front of my thigh. it appeared about 6 moths after i was better(just to let you know, i am in no pain). i remember when i was first diagnosed, it, too, had flared about 6-8 months after the first corrective surgery.

the reason i decided to post this, is, i wanted to say that it is possible to manage this disorder and live a normal life. the hardest thing is finding out what works for you. once you find out, then you know how to make yourself better.

i don't want to go as far as saying that rsd can go into remission because i think that it is always there. you just don't necessarily see it or feel it. i do believe it can be managed because i have been doing it for a long time.

take care! i wish you well