the last couple of months i have been get pains in my legs from the knees too the feet, the pains the same as my arms. also i'm getting tinglely feelings also in my feel and they are white and loosing hair on my legs O i'm so scared that i'm getting RSD in my legs, I have in both my arms and shoulders, i'm getting dpressed still have not received SSDI waiting for a seond hearing from a ALJ and my attorney had to file a civcil case do not know how long that will take. just does not seem to be a light on any ware. I have been trying to get disability since 2005, I hurt so bad i wish God would just let me have a heart attack and die at lease the pain would stop and then my wife would get my Social Securty.

First of all welcome to the board.

What does your doctor say? Have you explained what is going on?

RSD is very hard to deal with, I think that shows. Don't get discouraged.

It really stinks when those tingly feelings start to spread.

My feet feel like that, too - but I try to walk. A lot. The swelling seems to stay on the tops of my feet most of the time (my sneakers usually feel like they are too tight, even though I tie them loosely) so when I sit down I take them off. But I just try to keep moving. I also have a lot to do - I work, have a house to clean, 2 kids, a dog, etc. It helps to stay busy. Do you have a yard that you can work in? One of my arms hardly works at all, but I can use my other arm to do things so that's what I try to do (it's a VERY clumsy, slow process!..)

Others on this board can perhaps help you with the SSDI and SSI matters. Its so complicated. Recently I read that it seems you can make out better on your own these days than when an attorney is representing you.

Also - Maybe your meds can to be tweaked - I take Cymbalta. It helps with the nerve pain, but its also an antidepressant. I still have some bad days, when I feel sad and depressed and miserable, but fewer than I used to have. RSD can make you feel so lonely and isolated because almost no one knows anything about it, and it seems like so few people want to help you get better (for instance - my PM doc quit a few weeks ago - by writing me a letter!! - "due to circumstances beyond his control." That's it. No other explanation! *sshole!!)

One last thing - do you have a dog? I rescued a little mutt from the pound 2 years ago. He is so loyal and sweet. It's one of the best things I ever did.

Take care and keep in touch, Sandy

Hi I understand and hear your feelings. We have to hold onto hope and I know this is very hard. I too have been in the midst of horrible pain and spreading. Mentally so down and with the same thinking. I am trying to hold hope into the next treatment and doctor at the pain clinic while also now I have more mental support in place. I am sorry you have been waiting so long for help finance wise. Do you have a pain doctor right now? If yes can you call and get an apt ASAP? If not I think you need to find a good pain doctor who deals with RSD.Hopefully if you get pain relief it will help you even with small progress to see better times ahead. I am not making this sound easy because I have been the biggest hopeless person lately but am trying to pull myself out of this but I know when I have a bad pain day those thought creep in but reaching out like you are is good. If you want a buddy I am here and I am sure others as well. I mean that from the heart.
Sandy that is sweet about the dog. I wish I was an animal person and I like others but to be a "parent" not so much unless it was like a very trained helping dog.

I know this must be the hardest time for you...just wanted to say that you are in my thoughts and I hope it all turns out well. Sounds like you have someone on your side though...hope you have strong support at home too. My rsd spread to both my arms....my doctor wouldn't believe it at first and thinks it has to be something else...though this website I know it is possible. My pain dr explained it well to me yesterday....with this the problem comes from the brain and spine nerves, those nerves can then create little nodules that spread making rsd go into other places. It doesn't always happen but it can. I hope in your case it isn't....also hope everything turns out well for you!!!
jennelle

Hang in there RSD31!

It may feel like there is no light at the end of the tunnel right now, but don't give up hope. This forum is full of people who understand how you are feeling. And let me tell you that we are here for you.

If you need to talk to someone, feel free to PM me any time. Please talk to your doctor about the depression you are feeling. Don't suffer in silence.

You are in my thoughts and prayers.

Best regards,

EJ

i seen my my art doctor thrusday he injected both my shoulder's and said that i need both my shoulder replaced no space left bone on bone and was told that i can take more darocet thr pain was so after that i had a hard time sleep i sleep most of the day on friday and the pain is better even in my legs but I can hardly do anything it just fires it up I'n sure not looking forward tto the shoulder replacement ask art doctor about the pain from surgery and he said it will not be good but feel that the RSD might come down a bit I have had 9 surgeys on my shoulder hands and 1st ribs removed and with this i'm shooting for 2 more operation total 11 and SSDI still say that i can work my doctors are so ****** off at SS that my bone doctor said that he would go the next hearing with me and talk to the judge. some times i have a hard time beleiving that there is a god and what is trying to get me to do

You have RSD and they're planning surgery? I'm confused.

IF you have to have the surgeries ask for blocks. Talk to the Anesteologist when you go in for surgery to do the blocks and that might keep it from spreading.

I have had 8 surgeries on my right arm and hand and 2 on my left plus some in other places and I did ok when I had the blocks. They did mine after I had been sedated for surgery every time.

I have had 2 rotator cuff surgeries and I will tell you, a lot of my pain was coming from the rotator cuff problems. I knew it though. I could actually tell what was the RSD and what was causing the other pains.

I also had a 1st rib removed. Now that is a hard surgery to heal from. The rotator cuff won't be as bad. It took me a year to heal from the TOS surgery.

Don't give up. It will get better and I know what you are going through. It's not easy but as time goes on you will feel better.

As far as the SS. Have you written to any State Reps, Govenors, or Senators? You might try that. That's how I got mine.

I am glad you found the forum. You will get a lot of good support here.

Ada