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23 y/o old female with RSD

AnonymousUserAAnonymousUser Posts: 49,622
edited 06/11/2012 - 7:19 AM in Chronic Pain
Hello, my name is Maria, and I am a 23 year old, former collegiate distance runner recently diagnosed with Reflex Sympathetic Dystrophy (RSD), a progressive and incurable nerve disease with the main symptom being chronic, debilitating nerve pain. I used to run 50 miles a week, and now, I have difficulty standing for more than 5-10 minutes.

I just wanted to say hello!

I keep a blog about my journey with RSD. Please feel free to check it out and spread it around if you enjoy it!
http://prefontaine44.blogspot.com/
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Comments

  • Sorry for your infirmity,I applaude your courage!hang tough girly! I will look in to your blog,as soon as i fix my computor.
    William Garza
    Spine-Health Mod
    erator

    Welcome to Spine-Health

  • I am sos sorry you have to deal with RSD my hubby has it and has had it for over 12 years and it's very very painful and no meds help! Did you have some sort of accident or trauma that casued it?

    image
  • Hi Maria,

    Welcome to Spine Health. I enjoyed reading your blog and I think what you did for the other individual suffering RSD was cool.

    I've done quite a bit of research on RSD, since one of my docs said he feels I have the early stages of it. I pray he's wrong and the other docs are right. Either way right now my spinal cord stimulator is controlling the pain in that area.

    Glad you're here.

    "C"

  • Welcome aboard, a friend of a friends wife here in town has RSD as well.I have seen the pain and only thing I can say is you have my prayers.
  • Hi 'C'

    I was diagnosed with RSD in early 2003. I had a shoulder injury in 2002 that caused the nerve damage and a bunch of other things! It took them a long time to figure out what I had. I pray that your diagnosis turns out well.

    I can pass along a little wisdom from living with this a very long time...
    :jawdrop: Even if it hurts, try to keep moving...stretching really seems to help me. Check with your doc if you can do some yoga or pilates type stretches.

    :) Another thing that my doc told me about was taking TURMERIC. It really helps with nerve pain. You can buy the capsules in health food stores. My doc told me that I could take it along with Lyrica. Coming from the medical field myself, I had to test it. I took it for several days and then stopped taking it. It worked...go figure!

    Feel free to drop me a line if you need a shoulder ;) I'd be happy to chat.

    Blessings,
    Tracy
  • Hi everyone! Thank you so much for your kind, consoling words!

    I've had RSD for about 2 years now, but it wasn't diagnosed until Feb of this year. It started out as a nerve compression injury from distance running 3.5 years ago. I had two surgeries and then the RSD started to develop.

    txgirl, I cannot wait to try the turmeric! I take neurontin and it helps a little with the burning. I also take a narcotic, norco, for when I have a demanding activity, and that seems to be the only med that really helps for a bit.
  • Hi Maria, you are so young, I am a young one too (19 years old female) but I don't have as much pain as you. I am only diagnosed with facet joint syndrome and I have some compressed nerves from swelling in my spine which causes leg pain. I had surgery for scoliosis when I was 17. And the Osteoarthritis is getting worse. Today I can hardly stand without wobbling and being in pain it's so bad. I feel weakness too in my thighs.

    I wish you all the best and hope you can get some relief. I am sorry you have to go through such pain.

    All the best, Lyssie xx
  • Wow it's great to have some folks around to discuss RSD. I'm bummed that you both have to deal with this, however very grateful you have docs that are not just dismissing your complaints which is so easy with RSD.

    Tracy,

    I've had to stop all the herbal medications or herbal supplements due to a couple drugs that I am taking. I may eventually be able to restart them, but for the moment I have to be patient.

    I am allowed to stretch as of tomorrow, however I have to watch that I don't pull the wires of my spinal cord stimulator. I have a friend who is a yoga instructor and we are already brainstorming and anxiously awaiting our start! Thanks for the advice. It is something I 100% believe in!

    What part of Texas are you from?

    "C"

  • Hi Maria, I don't know anything of RSD, as a matter of fact, I've never heard of it before reading your post. The words "distance runner" caught my eye. I am also a runner. Once a runner, always a runner (even if we are not running!!) I'll check out your blog and learn something new tonight. Thanks for posting! ---Mazy
  • Hi alyssa! I am so sorry you are dealing with such a painful condition at such a young age. I send you all the healing and love I have!


    Mazy, fellow distance runner! I will forever miss my one true love, running :-( How did you become injured?

    haglandc, hello! How long have you had RSD, and are you having any luck managing it?

  • Maria,

    It's really hard to say how long I've had RSD since not all docs are in agreeance as to whether that is what it is or whether it's just a huge mess of a mess that mimicks RSD. The NS that said he felt I had the begining stages of RSD told me that in Feb 08.

    My pain region is quite large and is being controlled right now by a recently implanted spinal cord stimulator, anti-seizure, anti-spasmotic and anti-inflammatory meds. I am very happy with how well things are being managed at the moment. Several of my friends here can tell you what a difference having the SCS has made for me.

    "C"
  • I actually went through all the protocol for the SCS, and was a few days away from having the trial done when my surgeon and I decided to go ahead and take a chance with another surgery...we are so glad we did since there were obvious structual issues present when he got in there. The SCS will be my next option if needed.



    txgirl, I'm off to get some turmeric right now!
  • Hey! Mazy here. I miss running so much! I am constantly whining and moaning around here about it! Few people understand, I'm sure. Earlier this year, while training for a Rock N Roll (Phoenix) half, I began to have serious arm and shoulder pain. Found out my neck is a mess! But, the docs say 25 years of running didn't cause it. I actually went from running 40 miles a week to a walking program! I miss it! It kept me happy, healthy, and skinny for many years! ---Mazy
  • I was also an avid runner before developing RSD. Its is frustrating to have such a stress relieving outlet taken froun you during such a stressful time. I'm going to check out your blog. Thanks for posting.
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