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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Jessica, Sharon, and Julie! Thank you all for the welcome back. I'm sorry you have RSD Jessica, and for 4 years... I'm glad you found this forum. There's a good group of people on here that genuinely care, as I'm sure you've found out already. I'll answer the treatment question in a bit.

15 inches of snow Sharon? YIKES!! How do you stand the cold? I definitely have [B]thin [/B]Southern blood running through my veins! You always keep a positive attitude...... I don't know how you do it, but you are an inspiration to us all and are one to be admired. I've always felt that way. How's your kitties doing? I bet one was curled up on your lap as you were typing to me. :)

Julie, I am so glad to hear that you haven't had any further spread since I last talked with you. I remember you were wondering if it had spread to your foot and were watching it closely. I remember that ya'll had started on the house........ how is it coming along? That is so awesome to be able to build your own house. I'm so Happy for you! I am sorry to hear that you can no longer push the wheel barrels around like you were, but it's always better to not push it when it comes to RSD as you know. I know exactly what you mean, and how you feel, when you say that you are slowly being shut down. That is a good way to put it... what RSD does to our bodies. At the beginning of last year I was determined to ride 3 times a week come hell or high water, but I paid for it in the end, and I wonder if that contributed to my RSD spreading to my right arm and hand becuase I got tennis elbow pretty bad and had a tough time with it for months. It got to the point where I couldn't type or anything. It definitely shut me down. My doc did some prolotherapy on me and after a few treatments it started to help, but I still had problems to an extent for months longer.

As for my horses... sadly, I've had to find homes for some of them, though I am still hanging on to several of them thanks to the help of my family and the money that I got from selling the ones that I sold. I even sold one that I swore I'd never sell because the little girl that came to see him clicked so well with him and I knew he'd be getting a great home with lots of daily attention. I have their number and know where they live, and they've said I can go see him any time I want, but so far I haven't been able to because I know I'd break down in tears. I miss that pony so much. He was one of my rescues, and one of my favorites. They were talking about showing him. I would love to see him in the show ring! I also still have some of my pony party ponies and we have done some birthday parties and festivals, but I'm not actively advertising for anything right now because I haven't been doing so great with the winter. I got rid of my pony wheel and we walk them around now instead. The kids seem to enjoy it more, and so do we. Thank heavens for my family... it is truely a family affair. I found a good home for my llama and miss her terribly. We have several riding horses also and my kids have been bringing their friends over several times a week and they ride in the arena or in the front pasture. My eldest son saddles, and all I have to do is watch.

I had some more SGBs when it first spread to my right side, but they don't always do too much for me after a while but I wanted to give it a try anyway. I am still refusing the stim and the "cook & fry" block (radio frequency), and I still think it's too soon for a pain pump. As long as we can reasonably control my pain with meds I won't get one... if I got one now, It would leave me with no options for the future in case i can't get this monster into remission, which I still haven't given up hope of doing yet. I am waiting to hear as we speak on approval for another epidural infusion, but I won't do it unless I can stay in the hospital the entire time. I really think that having to be at home the last time with home health care defeated the purpose of the procedure. I didn't get any rest and kept using my arm where in the hospital, I won't have to take care of, or rather, feel that I need to take care of, my kids like I did the last time.

I want to ask you about what you feel in your foot that you think it spread to. I know you told me in the past but my memory is pretty bad, and is getting worse by the day. I'm having trouble with both of my feet... it's like they cramp up or something and it's hard to walk sometimes. It feels like all the tendons or muscles or whatever contract or shrink, and when I go to walk it stretches them and man is it painful. I don't think it's RSD... I don't know what it is. It started with the bottom of my feet just hurting *real* bad and has progressively gotten worse. My doc doesn't seem too concerned, but I am started to be. I'm also getting daily headaches that are driving me crazy.

Thank you for saying that I was an important part of this forum. To me, you guys are an important part of my life. I wasn't able to come on for months, and then I didn't have a computer for even longer, but I thought about you all all of the time. I still can't come on like I used to, my arm muscles get weak and tired and it's painful for my hands..... but i need to keep doing something to prevent muscle loss. My horses help, even though I don't ride often. There's a bunch else going on....... I moved to a different building on my property, closer to the barn, and my mother and sister are moving into my house (I can have peace & quiet back here). I am going to study natural horsemanship to try to get out of my depression and to try to heal my mind so I can hopefully heal my body. I am so psyched about that.

Anyway, I am going to go read a few post before heading to bed. I'm sorry this got so long (lol). I hope you all are having a decent, low pain evening, and I'll talk to you soon.
Cathy





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