I'm a newbe and want to say 'Hi'

Discussion in 'Fibromyalgia Main Forum' started by Mareeok, Sep 13, 2005.

  1. Mareeok

    Mareeok New Member

    Hi, I have RSD (Reflux Sympathetic Dystrophy) since 1976 and afterwards developed FM and RLS (Restless Leg Syndrome). I had to stop working the end of last May because the pain was too much. I have a high pain threshold but reached my limit. I had, besides my primary physician) a neurologist who was also a patient advocate who turned out to be no help at all. He refused to let me go on disability for the RSD because I refused to submit to all the treatments and heavy drugs he insisted I had to try. However, since practically everyone on my RSD support group got way worse from the treatments and drugs I refused to take that route. I wanted to stop work so my symptoms wouldn't get worse...I wasn't about to deliberatly make myself worse in order to stop working. If I've learned anything, it is that you don't mess with RSD. Anyway, my kids said,"Mom, just quit. You've taken care of us, it's our turn now to take care of you." (I am blessed with great kids). So that's what I did. Switched everything over to their name, got rid of my car. And there went my health insurance too (groan).

    I want to learn more about FM now that I have the time. My RSD was always the worst so I concentrated on that. Now that I'm home I want to find out all I can about FM. Thank you for letting me join your family.
  2. fairydust39

    fairydust39 New Member

    Welcome to the board!! I have many health problems too.To help your reflux, Get "Multi-Food Enzymes" and take with every meal. Wal-Mart has them cheap. Also do a Colon cleanse and that will help you sooo much. It gets rid of all the impurities in the body. "Colonix" is a very good Colon cleanse kit and has everything you need to do a cleanse.These are the most important things you could do to help yourself right now. Please don't wait to do these things and I know you will be better.
    God Bless,
    Shirley
  3. lilac123

    lilac123 New Member

    I am sorry I don't know what RSD is but just wanted to say hello and welcome to the board! You will find many great people here sharing their experiences. It has helped me tremedously just to know I have somewhere to go where people understand.

    Good Day to You!
    Jenny
  4. EllenComstock

    EllenComstock New Member

    I am not familiar with RSD, but I do have the FMS and the Restless Legs Syndrome. One thing that has helped my RLS is Gabitril. It's actually a medication for epilepsy, but is also helpful for RLS. Since taking it, my RLS has improved by 80%. In addition to my legs, I also had problems with my arms moving involuntarily. You might look into this medication.

    The FMS is another story. We all know what a challenge this is. The doctor has me on a low dose of morphine now for that. I am fortunate to have such a good FMS doctor. It took me years to find him.

    It sounds like you have a great personal family who is supportive. I still work part-time (mornings only) at a college. I have the summers off. Not sure how long I can do this, but am taking it one day at a time.

    I hope you find this to be a warm and supportive place as I have. It's great to talk to others who understand.

    Ellen
  5. Mareeok

    Mareeok New Member

    Thanks everyone for your encouragement and tips. I will definately try them.
    RSD is a neurological disease. We have a pain channel in the brain that tells our bodies when we get a trauma and thus pain. Normally when the trauma is over the pain goes away. With RSD the pain gets excruciating and chronic. Most people with RSD also have Fibro and is often misdiagnosed as Fibro. Even a slight breeze can cause tremendous pain. In the first few yrs that I had it I could not stand even a bedsheet touching my skin. I could not walk for months at a time. Treatments can often cause it to spread to different parts of the body. In me, it began in my neck and back. When I got pregnant it went into remission for about four yrs then came back with a vengence in my legs and feet. After a few more yrs it spread to full body. My pain level on any given day can run the scale from a 5 to over ten. If I do any walking I put it in a flare that can last one day to weeks at a time. The last year of my working, the pain caused me to barely get from car to building. My scenario during the week was work, then bed afterwards. The weekends I could do nothing but just try an recoup so I could go back to work on Monday. It causes depression with many having suicidal thoughts. One man in my support group had such an extreme case that he developed ulcers on his legs from the hot pain inside his lega nd had treatments in a hyperbaric chamber so the pure oxygen could heal some of the sores. He passed away a few yrs ago. He was only in his thirties.
  6. Rosiebud

    Rosiebud New Member

    sorry it's under those circumstances.

    I recently learned about RSD from Bruin 63 who is a member of the boards and has that too.

    I have CFS/Fibro/IBS/gastric problems and had to give up work 10 years ago.

    You will find lots of support here.

    Rosie
  7. patientnurse

    patientnurse New Member

    My heart goes out to you! I do a lot of health reading, and can't remember half of it, but I think I remember RSD has been renamed by the rheumatologist. Have you heard anything? I like to stay current. Makes me sound smarter when I go to the doctor!!!!
  8. Mareeok

    Mareeok New Member

    Your correct. RSD is also called Complex Regional Pain Syndrome (CRPS). I can never remember the new name (it causes memory problems also- LOL).

    I will have to look up some of Bruin's posts.
  9. patientnurse

    patientnurse New Member

    OK! I have written it down (again). I'm glad you explained it; anyone of us could develop it, God forbid, and knowledge of these other syndromes is important for lots of reasons.
    [This Message was Edited on 09/15/2005]
  10. Mareeok

    Mareeok New Member

    RSD/CRPS can be gotten by any type of trauma which includes among other ways the following:
    A sprain...a fracture...child birth...a small hike in the woods with minimal climbing (how I developed it)...surgery...falling...tripping...walking up or down stairs...etc, etc...

    It doesn't have to be a big trauma and some suffereres will never know how they developed it. It is said that if it is treated earloy on there is a very good chance of getting it under control and keeping it mild. The ironic thing is that because it is rarely diagnosed eary because most doctors dismiss it as something else it is rarely diagnosed early It took over ten years before I was diagnosed. before that I was told to get a hobby because it was all in my head. I was told that b y various doctors, even though my feet were swoolen three times their size and purple and I was holding the doctor's hand so he would not touch my skin. Before RSD can be diagnosed all other problems have to be discounted first. When I was finally diagnosed I cried because finally I was believed. This awful pain had a name. I was thrilled.
  11. PainSux

    PainSux New Member

    I had unsuccessful carpal tunnel release four months ago & I'm still having incredible pain almost a ten on the scale of pain often. My TMJ is worked up again...I'm starting to wonder if I might have the RSD...they have no idea what is causing my pain. I'm very frustrated & so not know what to do.
  12. Cromwell

    Cromwell New Member

    What is RSD is it to do with gastric refulx that many here have too?

    Hope you will stay and contribute to the support and lively discussions we have here. Cute jokes too for that smile needed.

    Love Anne C
  13. Cromwell

    Cromwell New Member

    See you actually joined before me.


    Those are cute Fimo figures. Did you sculpt them? I used to be a Contemporary doll designed for HSN-bet those would sell there!!!

    Love Anne
  14. NyroFan

    NyroFan New Member

    Mareeok:
    Welcome to the message board. Your story is pretty much like many. I have tried the meds the doctors have given and have found them to help immensely. I was a wreck until given proper medication. Sometimes it's a matter of 'doctor shopping', especially with FM/CFS.
    You sound like you have great kids. Now you have some relief. I hope you stay on the board and get what you want out of it and give what you wish.
    Hugs,
    NyroFan