Reflex Sympathetic Dystrophy (RSD)

[G0J0G0]

Hi Tamlan,
Greetings to you and your husband. My first inclination was to say "I really do not want to answer this post". I told my wife this and her response was to write that and send it. The reason is I am so sorry that you have encountered this monster. If you have conducted any reasearch on RSD you have probably found that recovery or getting rid of this disease is rare and that the road that lies ahead is paved with pain and and uncertaintity. Although remission is possible it is rare and your best bet for such is to agressively attack the monster with physical therapy and pain control. I recommend that you keep the affected area moving and strengthened as much as tolerated.
To your question about disability, how long ago did you file and did you hire a lawyer? I called Social Security and followed their instructions and was awarded benefits in two months (without a lawyer). This is not common for the time frame is usually lengthier than this but calling them gave me the instructions to act on and I like to think was instrumental in seeing my application to me receiving benefits. I strongly suggest making the call and following their inst. to the letter to better your chances. I pray that you see improvement soon and that you and your husband find a way to get past this monster that has invaded you lives. Write me anytime, for I will do anything I can for you all. Be blessed, gojogo

[G0J0G0]

Hi Leanne,
I was reading some of the posts here and wanted to drop you a line and see how you and yours are doing. Is your pain being controlled to a better level, I hope so I am going to be online for a while if you get a chance chime in? Have a great day, and pain free blessings to you and yours, gojogo

[tamlan]

I would like to Thank You for answering to my post.We signed up for S.S in March and yes we have finally gotten a laywer. they keep telling us it is the way the Doctor answers the Questions. My husband still has broken bones in his foot but the ortho Doctor won't touch it until the pain clinic gets the RSD under control. They had him going to PT for about 3 time and then PT would not touch him after that due to the swelling and the color ect. The only thing they have him on is vicodin for the pain. The only time he gets any relief is if he sitting with his foot up on pillows. You are so right this thing is a monster I feels so bad for him and don't know what to do for him. He has ask the Doctors many times to please just cut it off. I'm very glad I happen to run across this web sight. Thank You again

[G0J0G0]

Hi Tamlan,
G0J0G0 here, and you are welcome, I read your relply and again am saddened by your contact with RSD. I know you might find this hard to understand that your husband wanting the doc to remove the affected limb, for I asked for the same consideration and was told many times over that it would not help for with it being a nerve problem the pain would remain for the nerves are still there and still aggrevated. Is the vicodin helping him with the pain, for the docs typically know how painful this disorder is and usually have no problem supplying enough meds to take care of the pain? Have you gotten a declination letter from SS yet, for they may have a positive answer on the way and you be out of the money regardless? You might have your husband set up a profile on any of the support sites, for there are many in his shoes that fight this fight that will offer moral support and an extra set of ears? I can be found on rsdandyou,com by the same name, also there are many information sites that will help you all understand what is going on and what is to be expected. I will help you any way I can, be blessed in all of your endeavors, g0j0g0

[leanne1013]

It has been a disaster with pain meds. I had more blood work to be sure it is not an infection because of its rapid progression. No luck. s you know I have been working part time and it has been ok, but, it seems by Friday I am spent and cannot get the rest I need even with the sleeping pills. I spoke to my boss today (Friday) and he said we are going to need to work something out. I dont want to not work, I feel if I dont I will get worse I know my personality I run everywhere I go. I dont stop and now I feel I cant do that because mt body is not letting me. I am not a napper during the day and lately I have been napping because I am just exhausted. Am I doing to much? My husband suggested I see a therapist who is knowledgable about RSD. So the search begins to find one in my area. AAAAHHHH! So how are you doing? I am sorry I havnt been on for a while. I could bring myself to be on here thinking if I dont come here I dont have the disease. Not a reality. This is a new life and I need to figure it out. Do you find you can wear sandals or just regular shoes besides sneakers?
May your days be blessed.
Leanne

[leanne1013]

GOJOGO.
I would like to speak to you on the chat but dont know when you are on. I know you have many appts during the day. Please let me know when you are around.
Leanne

[G0J0G0]

Hi Leanne,
It is 1:30 central time and I am going to be logged on for a while, if you would like to see if we can link up and chat for a while... be blessed, gojogo

[kellum]

I feel the same way some time. I want to know why there is not commericals about this? Where is our ribbins, and walks for a cure. I can not believe this disease has ruined so many people lifes and people and doctors knows litte about it. How can we get someone on Orpry. Get a famous people to hear our storys. Get some money for research. It is time for us to get Mad.

[G0J0G0]

Hi Kellum
Good to see you up and abt. How have you been, it has been a while since I have seen you here?
I wish I knew the answer to your questions. I have written congressmen, legislators, TV personalities, and the list goes on and on. I started this very aggresively when I first got sick and since then the monster has spread and I don't have the drive I once enjoyed. I recommend writing the personalities listed above, and to anyone that will listen. Again this is not much of a motivator in that it almost sounds as if I have no get up and go. This not the case as much as I don't have the capacity I once had, and the energy spent today is spent more on caring for the needs at hand. There is a petition available on this site that once was to be spent to our elected officials to help gain some recognition... I am not sure what the end result was on this, but the people were great to have started it in the first place. I hope this helps some, and more importantly I hope your pain levels are in a tolerable range. May the Lord bless you with His presence this holiday season, g0j0g0...

[zako]

I am 30 aussie male had rsd for 11 years now.. I think the best advice I can give you is find a friendly caring doctor, try diff meds to find best one for you...If something works quite well and is not addictive..use that...the only med I have found that remotely worked was Oxycontin, I also smoke cannabis to help put up with pain.feel free to ask me anything...