Reflex Sympathetic Dystrophy (RSD)

[leanne1013]

I just found out this week I have RSD. I had an injury to my lower leg and since then I have been in pain. I didnt know what is was and neither did my Dr. Who finally tried a neurologist who has experience in RSD lucky me. After the usually feeling like I have been through all the tests I think I could take, he called me with the results. At first I was confused, I didnt know anyhting about it, I had a million questions for him and didnt know where to start. He happens to be easy to talk to and is avaliable for any question. STill I have so many more which I am not sure what to ask and what is next. He has me on Percaset twice a day, and I start pain management in 2 weeks. Will this get worse I hear all different stories and I am not sure what to go on. I was told that spreading is somewhat normal and it can happen, apparently depending on the nerves are affected. If there is anyone who has more "experience" with this please if you can give me any insight that may give me some kind of idea of what is ahead.
Thanks
Leanne

[G0J0G0]

Hi Leanne,
Unfortunately there is no pat answer for the treatment questions you raise. You are very blessed to have a doc that knows a bit about the disease and is willing to take on treatment for you. The more you research the more you will find this IS NOT THE NORM. The most common opinion on treatment for early diagnosis (DX) is get into physical therapy asap and keep it moving as much as you can stand. For inactivity is an enemy of RSD and will cause the symptoms to worsen. It isn't a rule that it will spread but quite likely especially if you are inactive. Your PT will probably get you to start desensitizing the area so that you can tolerate clothing, shoes, and the like. I have RSD in my left foot, ankle, and leg and I regularly scrub the areas with an exfoliating scrub pad to help with the sensitivities. Before I started I couldn't wear socks most of the times and shoes were out of the question. Visit some of the other sites and arm yourself with info and keep your doc informed of ll of your symptoms. Ask him about the desensitizing technique and get ready for the next visit. I hope and pray that you find all of your docs as willing as the one treating you now, if so then you are truly blessed in your treatment. Have a great day and be blessed^, g0j0g0.

[Copper]

I just found out a couple of weeks ago that I have RSD also.It is located in my right foot.I have to wear an air cast boot in order to walk.I have almost lost all movement in my foot.I find it very hard to sleep.I can't drive.Where I work they have moved my office downstairs so that I don't have to climb 2 flights of stairs all day.Along with RSD I have a bunion,arthritus and severe tendinitus in my right foot.Maybe that's why is has advaced so quickly.I'm on pain medication and they are supposed to set me up with a pain clinic.What excatly do they do at a pain clinic?I remember the appt like it was yesterday,I had been having multiple problem with my foor and no one seemed to believe me,as well as with the amount of pain.I thought I was going crazy.By the 5th doctoc I finally found out what it was.I was expecting the doctor to give me good news like,it's broken or you pulled somehtign and all you need is a brace adn your foot will be fixed.Instead I got...your pain will most likely increase,it could spread to other parts of your body and he's the best part...."there is no cure".I easily get frustrated becasuse I can't do all the things I use to do like drive,go grocery shopping,run errands.Now someone has to take me.I feel like in invalid.I'm not even thirty years old and I'll be gettign a handicapp card so that I don't have to walk far.Part of me underatnds it,the other part doesn't want to becasue if I do I admit to defeat or that's at least what it feels like.Is there hope to get better or am I grasping at air.If I knew that things could get better than maybe I would have a better outlook.Don't get me wrong thigns could be worse.But for now this is my battle.

[G0J0G0]

Hi Cooper,
G0j0g0 here, first allow me to express my sorrow that you have met this disease for it is horrible at best to encounter this monster. And to what a ain clinic will do, they typically put together a regimen of meds that will act to bring you pain levels to a tolerable level. Unfortunately what you have found about RSD is typical, even the fact that it took five docs to determine a diagnosis and there is no cure at this moment. I know how you feel for I am a bit older than you but all you have said hits home. My recommendation to you is look for anything positive that will help you get past this bomb that has landed in your lap. There is no real answer for what you are now facing, you can get acquainted with some people in some RSD support groups like this one here. This will help you to learn as much as you can about the disease and what you can so for your self to alleviate the pain and to what you can do fight the flood of emotions that are rushing your way. I have had RSD for two years and RSD has forced me out of work, and onto disability and has kept me from a lot of social activities but I have learned that it can only take what you offer up and through much perseverance and a general desire to keep moving I try to progress every day beyond what has come my way. It will help, you to stay in touch with your present day activities as much as possible but know this, you now have a new set of limitations and there are and will be a lot of things that were once every day functions that will become difficult at best. I pray that you find a support group that offers some support that will help you in the days ahead. You can respond to this entry and we can stay in touch here or you can down load the tool bar fromthis site and we can chat live. You can also look me up at rsdandyou.com, I try to visit both sites regularly. Again I pray that you find favor with your docs from here on out and that your family stands with you with the new set of challenges facin you. Look me up when I can be of any help and I will be prayinf for you. Be blessed, gojogo

[leanne1013]

I am so sorry to hear it is so advanced. They also thought I had a sprained ankle (right ankle) and I wore an air cast for about a month and it still hurt. So both my legs hurt terribly with no obvious cuts or bruises. My husband has no idea how I feel and cant imagine "it hurts so bad". He is going to come with me my next appointment. He keeps down playing it but it makes me feel so bad and I keep telling him its real and the pain is constant. I too feel like an invalid that I need him to do for me and I cant do the normal things I am so used to, shopping, walking to work, etc. The more I do, the more it hurts. It is as my Doc says it is progressing. I am having such a hard time with this and I feel nobody understands. How do I get people to understand without feeling like I am identifying myself with just this. Sorry just needed to vent again, new at this. thanks for listening

[G0J0G0]

Hey,
No need to apologize here, for this is not only common but almost expected. Don't get me wrong I don't expect anyone including yourself to just roll over, but you have just been handed a diagnosis (DX) that rocks even the most stable of person's world. I work(ed) for a fortune 500 company and have been working on approaching the retirement years of life, w/two kids just graduating highschool and living in a quite suburban neighborhood and this happens and I do very well to leave the house twice a week. I say these things to simply say that the pain levels you are experiencing are real and the docs that acknowledge the disease will relate this to you and your husband. Do a google search for the "McGill Pain Index" and look at where "causalgia" (causalgia is a former name for RSD/CRPS) falls on the list. It is rated second only to amputation with out anesthesia in pain levels, so you have a right to be hurting beyond description. There is a Dr. Hooshmand that dedicated forty plus years to the treatment and research of this monster, look up his site and get a picture of how devasting life with RSD can be.
Now with this being said research is being conducted every day and the meds used can at times offer greater relief and there are many support groups that do a great job of offering support and you will need support. Don't hold it against you hubbie that he doesn't relate to the pain levels, no one can, until they have seen what RSD can do. Having your husband look at some of the sites available with you will help him understand. If you would like to chat, down load the tool bar from this site and hit the small arrows on the extreme right of the bar and then select chat. You also can reach me and many others at rsdandyou.com. reply to this thread with a time to visit the chat and I will meet you there.
I know this a lot to absorb and it is hard to do so alone so be encouraged to look up someone that will face this with you. If not your husband than another family member, but it is in your best interest to find someone to face this monster down with you. Be blessed in your journey and may the Lord bless your efforts. Have a great day and a great Independence Day, g0j0g0

[G0J0G0]

Hey Leanne,
No need to apologize here, for this is not only common but almost expected. Don't get me wrong I don't expect anyone including yourself to just roll over, but you have just been handed a diagnosis (DX) that rocks even the most stable of person's world. I work(ed) for a fortune 500 company and have been working on approaching the retirement years of life, w/two kids just graduating highschool and living in a quite suburban neighborhood and this happens and I do very well to leave the house twice a week. I say these things to simply say that the pain levels you are experiencing are real and the docs that acknowledge the disease will relate this to you and your husband. Do a google search for the "McGill Pain Index" and look at where "causalgia" (causalgia is a former name for RSD/CRPS) falls on the list. It is rated second only to amputation with out anesthesia in pain levels, so you have a right to be hurting beyond description. There is a Dr. Hooshmand that dedicated forty plus years to the treatment and research of this monster, look up his site and get a picture of how devasting life with RSD can be.
Now with this being said research is being conducted every day and the meds used can at times offer greater relief and there are many support groups that do a great job of offering support and you will need support. Don't hold it against you hubbie that he doesn't relate to the pain levels, no one can, until they have seen what RSD can do. Having your husband look at some of the sites available with you will help him understand. If you would like to chat, down load the tool bar from this site and hit the small arrows on the extreme right of the bar and then select chat. You also can reach me and many others at rsdandyou.com. reply to this thread with a time to visit the chat and I will meet you there.
I know this a lot to absorb and it is hard to do so alone so be encouraged to look up someone that will face this with you. If not your husband than another family member, but it is in your best interest to find someone to face this monster down with you. Be blessed in your journey and may the Lord bless your efforts. Have a great day and a great Independence Day, g0j0g0

[leanne1013]

than you for your post. It is reassuring to know someone actually understand and I am not alone. I showed my husband the McGill pain index site and he felt terrible. He is actually trying to help and be more supportive. Thank you again. I would like to download the tool bar butI am not sure how and what to download. Please let me know how to do it and where to get the download. Always be blessed.
Leanne

[G0J0G0]

Hi Leanne,
To down load the toolbar go to the bottom of the page and there will be an example of the bar, "click" on the bar and follow the instructions. It is a very simple task, and respond to this thread and we can coordinate a time to talk and I will be glad to chat with your husband and give him another perspective of RSD and it's effects. Again be blessed, gojogo

[leanne1013]

I knew I wasnt going completely mad. The Download box does not show up on myu computer at home. When I tried it at work I saw the download that is not on my computer at home. Whew, I really thought I lost my mind completely. I will work on it when I get home. I will get my husband to help me.