NeuroTalk Support Groups - New here and looking for friends!

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

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

- - New here and looking for friends! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/106789-looking-friends.html)

Jimking

11-04-2009 10:58 AM

Quote:

Originally Posted by lostmary (Post 585924)

Kim,

I'll be getting the pain pump trial at the hospital in Silver Spring. It's Holy Cross. It's in Md. Of course, I live in Virginia. it's almost and hr and a half to two hrs drive one way. I sure hope the pain pump work. It's a long drive. Luckly, I'll be in the hospital for the 4 day trial. I'm still waiting to hear when the date will be. I'm hoping for a week or two, but somehow I think it may be a couple of weeks yet. Then I have to wait for the perm pain pump and then the long healing time. But then I'll be able to go back to riding horses and all the things I used to do. That is, if it works. I'm sure hoping

Hugs
Mary

Mary, my wife and I live just outside the Washington Beltway in Virginia. My wife, who has RSD, is from Silver Spring Md. Please keep us posted how the trial goes. My wife has made up her mind about stimulators and doesn't want to take a chance on invasiveness, the pump maybe another story. Good luck! :)

jim

loretta

11-06-2009 04:19 AM

Quote:

Originally Posted by kim ames (Post 585385)

Hi Mellowguy! Thanks for the kind words and encouragement. I do try to keep myself busy each day. It does seem to distract me from the pain, and helps me calm myself down when I am stresses. I feel as I've found a wonderful place here to meet wonderful people who are truly compassionate and caring. It feels good to hear other encouraging stories, and it helps brighten my spirits to have others understand. (Not that I wish this on anyone!) I hope we can get to know one another better. Have a great day!

Hi Kim,
I have been thinking of you and was wondering if you are still plagued with nausea? A med that has helped me so very much is an anti-anxiety med called lorazepam. Because it calms the nervous system down, I'm able to take less pain meds.
I feel the same way about the compassion and encouragement from all our friends here. Thank you for your sharing how you feel about the comfort we all receive here. Take care, loretta with soft hugs:grouphug:

bassman

11-06-2009 04:32 PM

Kim, and others who have recently joined:

Welcome one and all. Please know that you are free to vent here if you need to do that. We all get frustrated from time to time and just need to let loose. We are here to lend an ear and, perhaps, give a kind word or maybe even just the right advice.

There may be a few of us who are medical professionals, but mostly we are “plain folks” who are discussing our own experiences. We may forget to include that caveat when we post, and you should always discuss any medical advice with your doctors first. Everyone has different conditions and reacts differently.

Also, never ever be afraid to ask. There are no dumb questions. If you do not understand something that is being discussed, please ask for a clarification. If you are confused, so is someone else.

Finally, we do not care about writing style. We are not here to judge you like your seventh-grade teacher. Express yourself. As long as you get your idea across, do not be too concerned about whether you are a good writer. We do not give out Pulitzer prizes.

Glad to meet you, even though it is through less than happy circumstances.

Mike

mellowguy

11-06-2009 09:35 PM

Quote:

Originally Posted by kim ames (Post 583668)

Hi everyone. My name is Kim and I was diagnosed in January of this year with RSD. I am new at this, so please bare with me and help me navigate as I become familiar with this site.

I would very much like to chat with you and hear your stories. I have been unable to work since October, 2008 because of this illness, and I feel like I am losing my mind! I was injured at work; hit in the left hip/buttock by a steel cart while I was squatting down. Torn hamstring and Piriformis Syndrome. My symptoms didn't improve, and finally in January of this year I was diagnosed. Since then, I have seen MANY doctors, had P.T., Chiropractic and accupuncture. I have had several EMG's (awful!), and a series of Sympathetic Nerve Blocks. I have atrophy in my leg of one inch, and can hardly walk, much less function! My Pain Management doc is very unsympathetic to my needs, as I react poorly to Narcotics and am physically sick almost every day. I am at my wits end -- sick from the meds, or in agony from the pain. I just want to be listened to, and have someone understand my situation.

If anyone is willing to give me advise, please do! Thank you all for listening!:)

hey kim,
just a quick note to let you know that we are hoping you are experiencing the least level of pain. As each day goes by, there is new hope for research to find an antidote to this agony that errupts our sympathetic nervous system. Don't be afraid to vent or ask anything of us. No one will turn you away or think negative thoughts of you. As I said before, we are all rowing the same boat together and, If we are to reach the shore of healing, we have to communicate our wishes and desires of what direction to steer the craft. As wind is to a sail, so is our hope of relief. Hope your having a better day and your mood is bright. Peace be with you, mellowguy

Kakimbo

11-07-2009 07:28 PM

Quote:

Originally Posted by mellowguy (Post 586999)

Hi Mellowguy!

Thanks for your words of encouragment! I really appreciate everyone's advice and genuine concern. I'm aware that RSD affects the entire family, not just the one with it; and I feel so guilty and selfish for easily sharing my pain with my loved ones. It's very refreshing to have an outlet to vent where everyone else understands completely. I feel like I have found a home because of you! Hope you have a wonderful, pain-free day.

:D

mellowguy

11-07-2009 08:21 PM

Quote:

Originally Posted by kim ames (Post 587233)

no problem. Glad to have helped. Have a pain free night and tomorrow

ALASKA MIKE

11-07-2009 09:12 PM

hang in there Kim.

have you tried the fentanyl patches? rolfing? phenergan 25 or belladonna for the nasea?

Mike

Quote:

Originally Posted by kim ames (Post 583668)

Kakimbo

11-08-2009 06:59 PM

Quote:

Originally Posted by ALASKA MIKE (Post 587261)

hang in there Kim.

have you tried the fentanyl patches? rolfing? phenergan 25 or belladonna for the nasea?

Mike

Hi Mike!

Thanks for the response. No, my unsympathetic pain doc won't prescribe them for me. I was taking Phenergan 25, my nuerologist took me off because of muscle tics, but I started them again; I would rather twitch than vomit. I go for my Independant Medical evaluation next month, and after that I am switching to a more caring and understanding pain doc. (W/C insurance games). I realize that we all need to make choices to become semi pain-free, so to me, this is the lesser of two evils. Hope all is well with you and yours.

Kim

Kakimbo

11-24-2009 01:15 AM

YaY! Morphine?

Kakimbo

11-24-2009 02:46 AM

Loretta...Thank you with all my heart! Your advice has helped me tremendously! I thank you for the ideas and your belief in me; and in all of us.

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