NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Hello? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/53267-hello.html)

Not sure if I posted in the wrong area originally, but thought I would try again. Nice to meet you all.. our story is in introductions :)

Hi Rita and welcome to NeuroTalk tho i very sorry for what brings you here

the forums are slower today being the holiday weekend but hopefully you will get some replies to your post soon from our RSD members

I am quoting your introductory post below so others can see your info

Quote:

Hi everyone.. I've just registered, at the request of my fiance', who was diagnosed with RSD last month following a crush injury to his left foot and ankle at work. His injury happened just over 2 months ago, and the RSD has already spread to his knee. He is experiencing tremors and "dancing legs" and has severe swelling and discoloration. Of course, he's dealing with constant pain, and taking 2 different meds at this time, without much relief.
We've seen the pain specialist once, and he has an appt. for a sympathetic lumbar block next month. The doctor says if it doesn't help, they will get "more aggressive". I'm really worried about this, and not sure how much more aggressive it can get! I've read that alot of people don't really get relief from the blocks, so I'm hoping it isn't in vain.
We had never even heard of RSD until he was diagnosed. We are both in desperate need of answers, and hope. We are both really glad to have found this forum, and others going through the same things.

Rita,

Welcome to our group. It is so scary to have this monster called rsd. I've had it for over 5 years. It started sometime after one of my several surgeries on my left foot. I've tried the meds, blocks, and I now have a spinal cord stimulator (scs). It has given me my life back. Before the scs, I was in bed or a wheelchair, with sometimes being able to go out with just a walker or cane. Now I can get around without anything. I thought I was going to have to give up my horses (which live here with hubby and myself, 3 dogs and 4 barn cats). Now I can take care of them again. It takes me all day to do what I used to do in a couple of hrs, but at least I can do it again. I almost think it is harder on our friends and spouses. I know it must be frustrating not to be able to help the one you love. The best thing for you to do is support him and try not not get to frustrated with him. Rsd can affect short term memory. It does get lost sometimes. One of the biggest problems is not always remembering to do things, or being able to find the right words when we speak. I hope you stay with us here, and keep in mind that we are here for you and yours, whether you want to ask questions, vent, cry, or laugh. We are here for you.

Hugs
Mary
:grouphug:

Hi Rita and WELCOME to NT!!!

So glad you found our little corner of the world!!

Please feel free to roam around... you may want to look at some of the older postings as there is a wealth of information here!!!

I understand your feelings as I have had RSD for 4+ yrs. Mine too started from a crush injury to my foot but has now spread body wide.

If you have any questions or we can help you in anyway... please don't hestitate to ask... someone will always be around shortly to help you in any way that we can.

:hug:
Abbie

Hi, Rita! :Wave-Hello: Welcome to NeuroTalk!

I'm glad you've found us. As Chemar mentioned, the holiday weekends tend to be more quiet around here, have a look around and you are welcome to join in anywhere. :)

Hello Rita and Welcome to Neurotalk!! I'm so sorry about everything that you and your fiance have and are currently going through ((hugs))

My name is Alison, I am 13 years old and I suffer from RSD in my left leg and right arm - If I can help you in anyway, please just let me know!

I really hope the Lumbar Sympathetic Block helps your fiance, please tell him I said "Good Luck" and that I hope he gets some much needed pain relief! I have heard a lot of people say that the Lumbar blocks can be helpful so I will keep my fingers crossed for both you and your fiance!

Please keep us all updated when you can!

Love,
Alison:hug:

Thanks to all of you for the welcome and advice. My fiance' and I went to his pain doc Thursday for his first nerve block. I had no idea it was going to be so bad for him.
He had a terrible reaction to the meds that were supposed to relax him, and the injected steroids pooled under his diaphragm and caused him to be very short of breath and have terrible pain in his arm.
He was so nauseated and had horrible tremors. He's still having horrible tremors and his pain and sensitivity are both worse than before the block.
Has anyone else had a reaction similar to this? his doc wants to do another block, and he says no way.. he's a tough guy, and he rarely complains much about his pain. He literally thought he was dying the night of the block.
The swelling and color were much better on saturday, but the pain was worse, and when he woke up yesterday (sunday), the color and swelling were as bad as before, but his sensitivity is so bad now..and it wasn't before, probably thanks inpart to his constantly wearing an air cast. Now he cant stand the air cast on his leg. His knee is also really swollen and throbbing.
This has not been a good experience for him at all..and i don't know what to do now!

Hi welcome. May I ask what tests he had on his limb? I mean mri,bone scan etc?I ask because of why he is in the air cast? Of course you need to follow the doc but I had a big mistake made with myself and being in an air boot. My issue is in my inner ankle/foot/calf. I am sorry I don't have advice on the treatment other then maybe he needs a different pain doc. Is this pain doc very familiar with rsd? If not I would try to find one who deals with this. I really feel that is key. I have seen 4 pain docs and gotten 3 different things they wanted to do for pain relief. What I have realized is you can't always go with the first thing suggested. I know how bad it is to want relief but I also feel one has to research a little which when this first happened I didn't. It has been about a year and half for me. Seems like million years so there are others here that are more knowledgable. Hang in there and he is lucky to have you

Hello Rita and another welcome to NeutoTalk here. Glad to see your'e navigating the forums ok, but let us know if you need any help. Glad you found us.

http://dl2.glitter-graphics.net/pub/...krsh78phkt.gif

Quote:

Originally Posted by daniella (Post 364415)

He has had a bone scan, no MRI yet, and numerous x-rays, because of the nature of his injury. It's sad that we are dealing with Worker's Comp, and can only do what they agree to pay for. The pain doc he sees is specialized in RSD.. so we are hoping he knows what he's doing..lol. My fiance', Reed has been in an air cast since his accident. It does actually help keep the swelling down, and I think it's more of an emotional support than anything.. he knows if he has it on, his foot and ankle can't get hurt. What experience did you have with an air cast?
My main concern right now is that even though he's had such a bad reaction to the nerve block, that if the doc suggests another one, he will have to do it, for the worker's comp. We have an attorney, and I'm hoping we don't have to deal with WC for too much longer..they are certainly a pain in the behind. Niether of us are concerned with trying to make a fortune from his pain, but of course we are worried that they may try to settle without including medical treatment. Knowing what little I know of RSD, this is something he could very well be dealing with for the rest of his life. It's already spread into his left knee now. It started in his left ankle and foot. I'm just at a loss right now. I want so much to help him, and there is so little I can do.