Promoting Awareness- Your thoughts and stories welcome.

In the effort to promote awareness, resources and information regarding Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome, aka, RSD, RSDS and CRPS these sites have been created so that understanding might come from them.
RSD Advisory and RSD Advisor are mirror dot.com sites

www.RSDAdvisor.com and www.RSDAdvisory.com

Here at RSD Advisory-WordPress you can leave comments, add your own stories, and tell the world of anything you might like to add. Just add it to the comment area of this post or one of the blogs that best fits you.

Thank you for supporting my passion to promote education, to date there is still no cure.

Best of wishes to you all

~twinkle/ellaj

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12 thoughts on “Promoting Awareness- Your thoughts and stories welcome.

  1. I love to find sites like yours that promote awareness of RSD. I suffered for more than ten years before diagnosis!

    Just started an RSD forum about a month ago and would like to invite anyone to come over and take a look if they would like. I am still working on getting some more topics up and going, but I offer RSD support, information, etc (as well as other non-RSD related topics such as current events, tv, hobbies, etc)

    This link will take you to the index page:
    http://www.rsdsupport.com/index

    Like

  2. On Dec. 2, 2006, after a wonderful evening out with my significant other and our friend, John, we were walking to catch the trolley to go back home. We crossed the street and walked a little ways onto the sidewalk. I stepped onto a COVERED manhole. The lid tipped in and my foot went in with it up to the knee. I twisted sideways, at the knee, landing on my hip and my elbow on the concrete. I hit the sidewalk so hard that I bruised my elbow bone.

    I have seen (and not necessarily in this order) Primaries, Physical Therapist, Orthopedics, Physical Medicine, Water Therapy, Pain Management.

    Even though there is NO cure, my pain has decreased some since prior to August. I have the Spinal Cord Stimulator (SCS) implanted into my spine, which sends little electrical pulses down my leg to counteract the pain signals being sent by the nerve to my brain. Now this condition is bad. It can overpower the SCS and pain I still have. I am able to give about an hour of my time to an activity outside my home.

    I tried to continue working. I made it off/on for about two weeks. I have been on disability ever since. I have already applied for permanent disability, but will not receive a response till about April 2008. My temporary disability runs out 1/1/08. So from January to April, I will not have a constant stream of funds coming into my possession. I have found a way to get help, however, I feel so low thinking of going that route. Oh well.

    I am blessed though. I have the most wonderful family anyone could ever hope for. On my worst flareups they take such good care of me (my man, my son, & my mom) – I couldn’t ask for anything more – well if the pain would go away I’d ask for that – but the strength and love of my family cannot be beat.

    So I took over your comment section, sorry about that.

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  3. I have had RSD for ten years, in my sacroiliac joints, I’ve found soulutions sometimes I’m doing well for years, then will have a terrible relapse. What I’m really looking for is anyone who has any information about doctors who specialize in RSD. Why can’t I find any sites that allow RSD patients to talk to each other? I live in Washinton state and would really like to know of doctors who specialize. Anyone? Anyone out there?

    Betty Ann Lyons

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  4. I have had RSDS/CRPS since 2003, I suffer horrably, and it is in my whole upper extremety,and my neck, and my back and it is moving into my legs to. It is really moving fast on me and the pain management doctor that I see can’t seem to get it to settle, or to get it under control. I also have Fybromyalgia from the RSD and I’m begining to loose control of all my motor skills, and that depresses me badly,I even loose all my train of thought as well. I need to find a RSDS doctor to help me with my RSDS/CRPS so that I will get some relieve if possible, and to try and keep it from spreading so fast. Please help me….

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  5. I have been on crutches for almost 2 years since developing RSD in my right foot & ankle…It’s been a frustrating experience but I’m going for a ketamine infusion at the end of this month so hopefully that will be the saviour I have been waiting for…

    Being creative is the only thing I can do to keep me sane…if you’re interested in saying hi or just checking out what someone else with this stupid condition is up to, check out my blog:

    http://rellacafa.blogspot.com/

    Like

  6. Current CRPS/RSD research is absolutely useless.
    Researchers must take a closer look at the heavy metals within the human system and understand bioaccumulation do to overheating.
    Metals will poison us and poisons do spread with devastating consequences to our tissue, blood, overall circulation, organs, nerves etc.
    Toxicity cannot be seen but it most certainly can be felt.
    Hair and nail samples of CRPS patients would identify level of poisoning.
    The metals within the human system are no secret but their actions and reactions are grossly underestimated.
    Overheat metal and it will melt down into liquid form, making it a property of water.

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  7. First of all I want to say excellent blog! I had a quick question
    in which I’d like to ask if you don’t mind. I was curious to know
    how you center yourself and clear your mind before writing.
    I have had a hard time clearing my mind in getting my thoughts out
    there. I do take pleasure in writing but it just seems like the first 10 to 15 minutes are wasted simply just trying to figure out how to begin.
    Any ideas or tips? Thanks!

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  8. Hi Natural and thank you so very much!

    I use to write much more than I do now. Years ago I was always writing about something. From a review to an essay, article, soft erotica, to poetry or just sharing about something. I do find it harder now.

    It’s really important to start by clearing the mind of any clutter. My mind tends to have so much going on in it I have a tough time concentrating on one idea or one thought.

    I use meditation and focus on the topic at hand so that no other things that are going on interferes with it.

    Another good tool is to write your thoughts down as they come and then compile them later to write about.

    It seems some of my best thoughts come at night when I’m too tired or sore to even pick up a pen to jot my thoughts down but then I regret it later and say all those gosh darn its to myself.

    I have a note pad beside the bed with a pen between the pages to make it easier so even if the idea comes to me in the dark and the writing isn’t legible to others, I know what I wrote.

    Just let it flow, I know you’ll do great!

    Well wishes to you,
    ~Twinkle

    Like

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