Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-04-2006, 10:14 PM #1
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Red face A not so good test....

Two weeks ago I had a bone scan, my new pain doctor wanted to find out what stage RSD I was in, since it was not in any of my medical records from the past 7 yrs with the previous pain doctor.

So off I go to this bone scan. It took about 5 hours total. By the time I was finished I was worn out and hurting all over.

This past Wednesday I went back for the results. He said from what he could tell from my medical records and the bone scan, I was stage 2 RSD.

I was like ok, this is good, better than stage 3 at least...ya know?

So he said...well there is something more serious going on though, and I am extremely worried about this. I was like what could be worse than stage 2 RSD? Ya know?

He said, in my shoulders, upper back, hips, knees and left ankle...(the left ankle bein the worst of all) ... I have Rheumatiod Arthritis! Where did this come from?

I tell ya, I've been stressed and flipppping out ever since....

But something about this makes sense to me....Back a few years ago I had the SCS Trial, and normally...(I am so not normal!) it takes 1 lead, 30 minutes to get it in, and your outa there, mine took over 50 attempts and 5 epidurals later....6 1/2 hours...to get one lead in...and the doc made a comment, stating I had so much scar tissue in my spine, he had a hard time getting that lead in there......welll...I've never had a back injury, nor surgery on my back..ummm nothing....

So would this Rheumatiod Arthritis cause scar tissue in my spine like this? My upper back just kills me...til I can't stand it most days. Think this would be why?

Back when I was 15, I had problems with leg cramps, and walking. I was taken to a doctor, and I happen to have the medical records still. My mom saved them over the years. One comment in there is "inflamatory rheumatic syndrome" and that I had a positive ANA, which is some blood work used to DX rheumatroid arthritis.

Any opinions on this?

Thanks

Debbie
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Old 12-05-2006, 10:35 AM #2
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Deb,

Sorry to hear that your bone scan wasn't a good one. RA is a very painful thing, and it sounds as if maybe they thought you had adolescent RA or the beginning of it years ago. They do have a lot of meds that are helpful, and I will send you what works for me.. (you know my brain and I'm not at home so if I can't think of the name of it i will let you know when I get home and look at it..LOL)

Did he mention any meds to start you on for the pain of RA?

Keep me posted and good luck..

Love ya,
Janet
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Old 12-05-2006, 11:34 PM #3
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Hi Janet, and thanks.

I am on meds now that should help with it, he said perhaps that's why I had no clue, it's masking some of it?

He did add a med. I'll write to you and tell you everything.

Hugs n Luv

Debbie
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Old 12-08-2006, 12:11 PM #4
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Hi Debbie,

Sorry to hear about this diagnosis, yes I have both osteo and rheumatoid. If anyone has found anything that they think really helps, I'd love to hear about it. I think the meds I take for it keep the RA in check, but it still creeps on a petty pace.

I've just started getting the small skin nodules around my ankles and on my forearms; every so often I get a week or two of flu-like sickness, dreadful night sweats being the most noticeable feature - and I creak like an old boat in the morning...oh, the joys of getting older I think osteo is more of an immediate problem for me, although the RA waits in the wings...

Glucosamine sulphate has done nothing for me, unfortunately - but since it costs a bomb, well so what..can't get a scrip for that here, they say they won't prescribe for "unproven" medication. But I took it for a year at least, then noticed not a jot of difference when I stopped. Anyway, just wanted to commiserate, give you a hug,
xxx all the best!
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Old 12-08-2006, 03:57 PM #5
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sorry to hear that I hope the best for you
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Old 12-11-2006, 02:01 AM #6
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Thanks you all

I have always...walked like a duck so to speak in the mornings...laffs...It's funny, but it's not....but for ages I've been told....if it walks like a duck...it's prolly a duck....laffs

As for those lil nodules your talkin about, I've had those on my feet, mainly around the heels, for ages now, but had no idea they were signs of RA. I thought it was odd they were there, heck I even thought about stickin a pin in there n poppin it...I thought it was like a bump under the skin...glad I didn't! They sorta roll when ya touch them.

So my thinking is, with the positive ANA when I was a teenagers, and walking like a duck forever in the mornings, and those nodules, this is something ongoing for years now.

Now I gotta figure out what to do about it. He said it is terrible in my upper back and shoulders and my left ankle. Funny how an x ray can show the damage...

Deb
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Old 12-11-2006, 08:07 AM #7
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hi deb:

they found the same thing on my x-rays 4 weeks ago. not fun. i also have those bumps that come and go around my ankle/heel, and one that comes and goes from when i broke my hand. yes everything i ever broke, and i have so many places, hurt like crazy at times. but the bumps drive me nuts. i never connected them and arthritis before. thanks

hugs and prayers
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Old 12-11-2006, 08:25 AM #8
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sorry to hear of the ra...i have heard it is really painful....but like i told ya in the email.....please keep an eye on any meds they give you for it...make sure you keep up with the blood tests.................
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Old 12-11-2006, 05:09 PM #9
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Debbie,
I was sorry to hear that you had RA. That is such a rough one. So far I got skipped over that one. IT's a Miracle for me. Nothing else seems to pass me up.

There are some meds out there now to help with it though, I know because my last Caregiver has it and she is on them. Hopefully they will help you with your pain.

I went to school with 2 cousins that had it. Betty had it so bad that her fingers were so curled at the age of 10 and 11. She had some surgeries done on her hands when she was in her 30's to help with it but her fingers are still curled and she has braces on them. I'm glad yours didn't effect you too much back then. God willing you will not suffer too much with it now.

As I said it is a rough one. I have those nodules on my fingers and I had a nurse tell me that it was RA but I have tested negative for it. I have had blood workup and bone density test to check on my bones and they are ok. Again another miracle for me. LOL

I hope you do ok and keep your faith and try not to get really stressed over this. I know it's worries you but stress makes everything else worse.

Ada
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