Hi! I'm Water Rabbit!

[QUOTE=frogga;57601]Hey;

Most of this is copied from earlier on - but as it took me days to write I don't want to have to retype it!

Basically (if you can't be bothered to read this as it is very long and boring). I got RSD when I was 16 after injuring my right wrist and I am 21. In that time it has spread full body and I have developed secondary dystonia which is also body wide. I have just started at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 5 cats and 2 dogs at home and unfortunately none at uni. I used to be very musical but now prefer hanging out with my friends or reading.

Take care and pain free hugs!

Rosie xxxxxxxxxxxxxx (a.k.a Frogga)

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Hi Rosie!

You history was not "boring" at all, but very informational and helpful!

I've had chronic pain since I was a child, am now in my 40's and yet the RSD is new to me. I NEVER thought I would be asking ANY doctor for a wheelchair, but in the last few weeks I've done just that!

I've considered having a live-in caretaker, and may not have a choice if this gets any worse.

Have you ever thought of writing a book on RSD/Dystonia and your experiences? feelings? treatments that worked for you, and those that didn't?

My RSD happened after I'd had the flu for about 3.5-4 weeks (H1N1 I believe, as a friend's children had just been given live H1N1 vaccine, and my immune system is, well... not the best.)

I've been tested for (and misdiagnosed, as the doctors gently put it) a few times now. My RSD started in the big toe joint (metatarpharengeal joint), and has now spread up my leg. I already had chronic pain problems, which are FAR worse now, as a result of bed rest I'm sure, and I too am concerned about this spreading.

I've had muscle jerking, like I had before, yet seriously far more pronounced, and harder to "hide" than it was.

The docs think my RSD started from an old back injury, a 20-year-old back injury, which I'm told is quite rare.

If I listed all the diagnosis I've had over the years, I'd pretty much cover about half the Merck manual it seems!

I am tired, and I too had vascular testing, which was thought to be a clot, until the cardiovascular surgeon saw the pictures I took at the hospital, the swelling, and realized the "non-compressable veins" were actually already compressed by the swelling. He's going to retest in a couple of weeks to be sure, and be sure my foot is up and hopefully not as swollen as it was for the next test, but the tech that did my duplex in the hospital didn't even measure my swelling (A common mistake), never noted it anywhere, and I was SO glad that I started keeping a photo diary. It's difficult for me to write by hand b/c nerve damage from anther injury (dog bite w/ open or compound fractures, and I too had lost use of my entire hand for a year and was told at one point amputation was possible.

I put my foot down, and it turns purple. I put it up, it looks pretty normal.
Still hurts, like you said, even with a fan, and sometimes even a breeze, or the doctor walking by, and not even touching my foot is excruciating. A podiatrist I was sent to early on purposely dropped a piece of foam on my foot AFTER I told him it hurt when he walked by, and then laughed... needless to say, I never went back to see him, and later was told by and Er doctor that this guy only was fit to make a "prescribe" shoe orthotics, and only had a 2-year degree! (some are actually doctors, this guy was not!)

Well, I hope you realize how much your post is appreciated! I'm not in a wheelchair, although there have been days, weeks and months of my life I've pretty well been in bed, so I know what that is like!

Grew up with Graves' disease, and spent much of my time in the hospital since I was 7 years old. I was able to work for a while, and thought I was over it, then got rear-ended in a car accident and have never been the same.

I wonder, of everyone here, how many others have thyroid problems (low or high levels)? Anyone have surgery and or radiation to treat thyroid? Been on synthetic and/or natural thyroid meds? I wonder, if like fibromyalgia, there might be a connection?

Does this run in families? (My mom had an injury while pregnant with me, I'm told, and she had some nerves clipped because the pain was unbearable.) A soda bottle fell at the grocery store on her foot, and she did have surgery while pregnant with me... Make one wonder if this might have a hereditary pre-disposition?

I want to know SO much more!

Any good articles, data, etc. from GOOD resources would be greatly appreciated! I have a strong medical background, and am published in the medical community as well. I did manage to make it through a lot of my schooling, yet would like to complete my PhD in Naturopathy, emphasis in herbology and kinesiology.

Frogga, thank you again for sharing! I left myself out of the relationship arena for SO long... seemed to take FAR too much energy for me... and I feel I do better alone, but do get a bit lonely from time to time.

Until a gal from my church came to work for me, and she'd only seen me on "good days" before then, she couldn't understand why I couldn't get up, or even why I was on disability... Now she kinda gets it, but I hid it pretty well. Few people in my life have any idea how much pain I'm in, the muscle jerking, etc., and I found I may have even held some of this back from my doctors. I might have told them about it, but I never really let anyone see me at my worst, nor did I feel up to being around anyone... too much effort when in a lot of pain to explain my heath issues to someone, or a lot of people. I've even made a form to email to new doctors with my medical history, medications, allergies (which I have MANY - food and medications, pollens, etc.) I quit going to most friends' homes because of food allergies (even someone cooking with olives or olive oil and some other foods can put me into anaphylaxis.

I've never seen a doctor's intake form that had enough room for my allergies or surgeries! Always had to attach it or write it on the back or the form.

Anyone else seem to be allergic to a LOT of things? Have a lot of surgeries?

So... Thank you and that's a bit about me.

I look forward to talking to others that are going through similar things, and if we help one another, perhaps we can unlock some keys to this painful nasty stuff we are dealing with!

Thanks again Frogga! You gave me the courage to share a bit about me!


Anyone else with thyroid issues? Back injuries?
RSD without a recent notable injury or no injury at all? RSD after illness? Flu? H1N1 or suspected H1N1?

Has heat or ice worked better for you?
TENS units? Help at all? Harm?

How do we keep this from spreading? (I've been told and read mixed things!) I want to prevent this from going anywhere else if at all possible!!!

Any good books?

I want to be an expert on this, and am more or less on fibromyalgia, CFIDS and post-Graves' treatment hypothyroidism - AND live with these three and more affecting my body... I'm NOT an easy patient, as if there is some drastic treatment or no treatment, I want to know why or why not, options, and work WITH my doctors, NOT be told what to do!

Anyone have short term memory issues? Cognitive issues?