Reflex Sympathetic Dystrophy (RSD)

[judy62]

hello
my name is judy as you can tell , i am new to this . i have had rsd for too many years to count proablely like 7 yrs. it is a struggle every day . pain is unbearable even with the meds. i have had nerve block berie blocks all the good stuff and it eventually stop working . my rsd developed when i took a fall downstairs and hit woodwork with my knee and shifted my kneecap which damage my nerves . and i went through alot of ups and downs . i was looking for a chat . and i found this . i am not argry about the rsd its just something i have to live with like so many other ppl. i went 2 yrs undiagnose . and i think this might help and maybe i can help some ppl too .

[reruho]

Welcome Judy,
I understand the need to chat with someone that understands. I used to go to RSDSupport before it shut down. I met lots of people that helped me understand what was happening and all the medical stuff too.

I have RSD/CRPS in my left arm after a car wreck on Halloween afternoon. I had taken my son shopping to get the last bit of his costume. We were heading home when a lady pulled out of a private school parking lot and turned left and hit us head-on. I had some simple factures (chipped ulnar, undisplaced distal radial and some undisplaced factures at the base of my 3/4 digets). Three weeks later I started having symptoms. I didn't have a clue until 10 weeks later when I went to see a surgeon on another matter. He was the one that gave my pain a name, "RSD". He was quite famiiar with it because he son suffers from RSD in his foot.

I am on my 2nd PM. I left the 1st one because he didn't talk to me. I had an allegeric reaction to valium and he wasn't that excited about it. His comment was, "Don't take it anymore." I like my new PM because they talked with me and listened to my concerns. He also ordered more testing (MRI) to rule out a possible pinched nerve. I just had that done tonight, a very interesting test. I was very happy it was in an open MRI, I think the closed one would have been much more difficult. What was great was the PM ordered last week and my insurance company approved it and I was able to go to an imaging center that was 5 minutes from my house.

[2ndtwin]

Hi! I am also a new member. I am 46 years old and was diagnosed with RSD when I was 11. I had a sympathectomy on my right leg when I was 13. I have had many injuries and incidences of RSD rearing its ugly head all through the years. I had a brachial plexus injury on my shoulder in 1996. I suffered for over 7 years with this injury. I finally had a spinal cord stimulator implanted in October 2003 and it gave me my life back! Last year I slipped a disc in my back and have been going through the whole vicious cycle again. My only choices now are a morphine pump(no way), another spinal cord stimulator(maybe down the road) or an "experimental" treatment called ketamine infusion. I would like to try this, since it has shown promise for pain relief of RSD patients, but of course I am fighting with my insurance company about this. Keep your chin up. I know how very difficult it is but these forums are such a big help to all of us. I know our friends and families really try to understand and help but I feel it is a burden to them so I try to find outlets in other ways, like this. If we all keep talking to each other about these things hopefully some of us will find more hope!

[G0J0G0]

Good morning all,
I have had RSD for two years now and immediately starting looking for on-line support and have found this site to be of great help as a few others. The one thing that appalls me is that so many people visit here, read the post asking for help and don't stop to post a comment or offer any support. Fortunately my early days found many people willing to lend a hand and I guess this is the reason I continue to come back here. This disease takes so much from you and when you have questions and fears they need attention. I have been out of sorts for the last coupl of weeks and haven't been able to keep up, but let me encourage you all to participate and be there for one another and others that may be holding by a thread. Blessings to you all and may your pain free days outrun all of your pain, g0j0g0

[sthrnkween]

I too am a new member. I also have RSD in my left foot and leg. I fell down the stairs at work and broke my foot. I couldn't understand why I was having so much pain after they took the walking boot off. I found out 2 months ago that I have RSD. With all the meds and therapy, I feel like I have no control of my life. I have been on Work Comp and now they are cutting me off and telling me I must return to work. I have been off work since Dec of 07. Work Comp is telling me to look for another job. I am in therapy 3 times a week. You tell me who is going to hire someone that must leave 3 times a week. My old employer will not return my calls or the calls from Work Comp. My doctor feels I can return to work. It's hard to drive on these meds and there are days I hurt so bad, I really don't want to do anything. Anyway, it wonderful to know there are other people out there who care about what you and I are going though. Just know, I will be there for you whenever you need to talk!

[G0J0G0]

Hi sthrnkween
It is apparent that you need to talk to a lawyer... You need a second opinion on your work status and the ability to return. Don't sign a release and do talk to a lawyer asap, for the most part W C persons want to dump you off and hope that you will go away and this disease will do nothing of the sort. Another might give you another opinion, but I would do nothing 'till I have talked to a lawyer. I hope and pray the best for you, Be blessed, g0j0g0

[Layla]

glad to have you aboard - it's great to share and comfort to help one another.

[sthrnkween]

I have obtained a lawyer. Work Comp doesn't know it yet. He is going to court tomorrow and making his filing. I am not going to let Work Comp off that easy. They think they have me but they don't. You are so correct, they have researched RSD and they want me out. Not going to happen!!! How are you feeling?

[G0J0G0]

Hi sthrnkween
Good you need to hold them (WC) to their responsibilities. They are paid on the ability to hold down costs and will do anything they can to "sweep you under the rug". I know a couple of ins. adjusters and they are dedicated to that end. They will offer you a half hearted settlement at which you should laugh, and they will want out of the medical coverage. This is going to be the most important to you for you will have huge medical costs as long as you have RSD.
To answer you on how I am feeling... I have seen better days, I worked out with a PT Friday and spent a little time in the yard Saturday and the rest has been down hill, but tomorrow will be a better day, and you, how are you handling the RSD journey? I don't know how much you know about this monster, but you have probably learned enough to know that their not so good days and the rest just plain stink... chuckle. I have learned my bodie's signals and somewhat know when to plan my day in the rest and recover mode, while sometimes I can go about my day with some sense of normalcy. While these days aren't frequent I have learned to cherish and enjoy them one and all. I pray you find that place with this monster that you can live above what RSD sends your way. If you need an extra ear to hear your ups and downs, drop me a line and we can chat you through the issues that are bugging you. Have a great day and be blessed, g0j0g0