NeuroTalk Support Groups - Our Stories & Introductions

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

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

- - Our Stories & Introductions (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/10725-stories-introductions.html)

Quote:

Originally Posted by Jo*mar (Post 57571)

Feel free to post your story, your RSD history, or an introduction to the forum members.

Welcome to the RSD/CRPS forum.

Hello out there! I was just diagnosed with CRPS a week and a half ago. I live in the great Pacific NW also!! So thankful to find an active site. I am sort of going crazy trying to find out everything I can and mostly what is normal and what isn't.
I also have fibromyalgia and systemic lupus, but the lupus has been quiet lately (thankfully).
I fell off my bicycle last September and hurt my foot. It just never got better and in fact is worse. Had multiple MRI's and x-rays but they couldn't find anything broken, just soft tissue swelling and inflammation. I'm relieved to have a diagnosis, but not necessarily happy with it ;)
The area is my left foot/ankle, but it seems to be spreading up my leg. The swelling is awful and the tenderness is exquisite. My doc put me on Celebrex which is helping with the pain, but still get shooters and lots of burning, aching type pain. I go back to the doc tomorrow to see what is next. This is not fun and I'm ready to quit playing.
Miz Lizzie aka Queen Foothurtsalot

lizzie

wanted to welcome you and come down and join any time you feel like it. ask away.. i ahev had full body RSd for 11 yrs..
im sorry that we had to meet this way..

come down and join the crowd.
ask anything and everything.. there are alot of great people here

welcome again

carrie

Quote:

Originally Posted by angelrsd (Post 509892)

Thank you! Was wondering if anyone has experienced a light rash that hurts like a horrible bruise. Pain and swelling seem to be moving up my leg also. This sucks - sorry, had a fitful night without much sleep. I can't even imagine having this full body. You must be very strong.
Lizzie

New in Baltimore

Hi,
My name is Jeannine...Im 51 and was injured at work on June 24th 2008...I was diagnosed in November with RSD...Right now I am home again after a nasty flare up...ugh.. This whole experience started when I was coming down the steps after punching in and somehow, God knows, I missed a step and landed on my left foot and ankle, twisting the ankle inward and landing on it....As time goes on Ill tell more about my experence so far with this crappy thing that ruined my life ...I am on Lyrica...300 mg 2xdaily and right now on another Predisone pack and hydrocodone with Apap..I have been on Lexapro for quite awhile, so no other antidepressents were needed...anyhow, if you all would not mind me looking around this site for awhile, Im learning so much, Ill leave more messages...sorry for rambling and any typos, as either the Lyrica or the RSD has left me a bit scatter brained ...
Thanks,
Jeannine

Be sure to post on the main RSD forum also - sometimes a single post here may not get noticed right away.

Main RSD forum -
http://neurotalk.psychcentral.com/forum21.html

Hi all
I have recentley been told I have RSD due to either Radiation treatment I had in 04 or carpol tunnel in both wrists,I have pain in my kneck shoulder arms and fingers, both hot and cold sensation in hands and fingers/arm and stiffness in my fingers. The Neuroligyst started me on low dosage of Gabapentin four days ago I am to call his office in two weeks to see how this is helping then see him two weeks later.
I am noticing a few strange things going on the other day I tried to shut a door but kept missing it eventually I shut it it took five attempts I kept miss judging were the door was, has anyone else had these experences, and when e-mailing I am missing some letters in the words I type I have to keep going over it I never had this problem the same is happening with my speach not getting words out the way they should be I hear my self saing the word wrong but to late gone and said it I asked my son if he wanted some peckers instead of peppers that kind of thing not all the time just some.
Thanks for any help you all can give to me.

Quote:

Originally Posted by unrouley1 (Post 95448)

hi all. i'm angie... i just turned 33 - wife of josh and mom of 3: talley (girl, 7), london (boy, 5) and scout (girl, 3).i was diagnosed with RSD about 3 days ago. i had shoulder surgery in march and had constant pain afterwards. the pain meds wouldn't work and i finally had a face-to-face with my doc about the pain that was burning a hole thru me! i had an x-ray and an MRI that showed the surgery was a success, but the pain said something different. i also had a purple hand and cold and numb fingers.

she told me i had RSD and sent me up to the pain clinic. the doc there said he didn't know... said 50/50 chance, but that he wanted to do blood work, a bone density scan and a shot in the neck. he said if the shot worked then he knew what it was.

well, i had the shot and it worked. i left the office without any mention of doing any other tests.

i'm really scared. i have a loving husband, but he doesn't understand how much pain i am in and thinks i just want attention. i am a very, very active person. i love any kind of sport and just play till my body stops. i'm scared that this is going to take over my life! i have been forgetting things. i have been talking strangely - i will start a sentence and then start the sentence over after saying the first 3 words like... i have to i have to go to the store.

can you guys relate to this?

i'm glad i found this forum.

ang

Hi Angie
Yes I too have this happen and then somtimes forget what the word is for something I asked my son to get his wash basket but got as far as wash in the end I just pointed to it and he said wash basket its very frustrating and then I dont say the word right like saying pecker for peppers that kind of thing. I have only recentley been told I have RSD so very knew to me. Like you I have pain and stiffness in my fingers and it must seem to my husband that Im going on a bit about this that and trying to find out what its all about and how it affects me, it seems like everytime he walks past Im on the computer doing research I just hope he doesnt get fed-up with me talking about it. I also have the pain in shoulder and arm hands/fingers with both heat and cold and tinling in hands I drop things alot and loss of strengh in arms and hands for me this could have been caused with having Radiation treatment for Cancer in 04 or that I have carpul tunnel in both wrists not sure which. I have not had anything go purple in colour but have read that this can happen its really frightning to know some of the terrible affects this can have on your body.

Hi Diane,

I am newly diagnosed with RSD and new the the area where I live in NJ. I have had NO luck finding a primary care Dr. who will listen and is interested in helping me piece this together. I have been to neurologists, neuro-surgeous, pyschiatrists, pain management, ............. I leave their offices in pain, begging for help, to no avail. I can't find a single Dr. lead alone a team to work with me. It's been 11 months, I have had no therapy, I feel like I am being lead in circles and I am afraid the longer I wait the more progressive my pain/damage will get.

What types of Dr.s do you see? What are their philosophies? My current pain management guy takes an "anesthesia-based approach." He does nerve blocks, epidorals...but that seems to be about it. I have exhausted my brain to find help. I feel so desperate and I haven't a clue how to begin to find someone I trust that can help lead me in the right direction.

I would appreciate any ideas about types pf Dr.s, their philosophies, drugs, therapies, etc...

I have RSD in my foot/calf/lef from herniated disks/back surgeries.

Thank you!

Quote:

Originally Posted by dlkeil (Post 60344)

Hi,
My name is Diane, I have been diagnosed with RSD since 2/2002. I fell in the parking lot at work and broke both the tib/fib 2" above my ankle in my left leg. I had surgery to repair the damage-2 plates, 19 screws. 1 screw was thru both bones as the tendon that holds the bones over the joint was compromised. I had another surgery 3 months later to remove that 1 screw, then in Oct 2002, they took the remaining hardware out thinking that would resolve the pain. Guess what.. it didnt!

I was finally diagnosed with RSD and have been trying to find a way to live with it and work with it. It has been increasingly more difficult to work the 40 hours I am restricted to. No ot no weekends.
My medicine regime has constantly changed to try to control the pain. So far, it is from my mid calf down to the tips of my toes. I believe it is beginning to crawl up my leg to my knee as I have burning pain more prevelant at night in that area now.

Luckily, I have had wonderful QRC's and doctors. I was diagnosed about a year and half after the accident. I am looking foward to participating in this chat area for both support, laughs, direction, and anything else anyone can provide that will help living with this much easier.

My family doesnt quite understand. My grown children are concerned about the amount of medicine I am taking, but my oldest son (28) attended my last doc appt and seemed satisfied with what he heard. (He lives in Italy and was finally home for a visit so he was able to go with me finally). My youngest son (25) still gives me some grief about the meds. It is difficult to explain this to someone that loves you and hates to see you like this. Hopefully one day, my youngest will be able to go to the doc with me as he is my emeregency contact should anything happen too me. My mom, well, she hears news stories about the meds I am on and calls me thinking that I am going to die any day if I dont get off these meds--but somehow I seem to calm her down letting her know that I try to keep on top of all the medical information about this as I can.

I am looking forward to gaining more info and sharing what I know if I can.:icon_wink: