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 04-29-2008, 08:58 PM #1
numb numb is offline
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Default treatment for bone loss due to RSD

Hi All,
I had bone density test on my hands, hips and spine during sperate occasions(hands first, hips and spine later). The result for my hands were positive but hips and spine were negative. Therefore, this doc confirmed that i had RSD in my hands for sure.
I asked the doc what to do with my bone loss. He said just take enough calicum. Is there any thing else to take trying to stop or reduce the bone loss?
I have suffered bone loss in both hands after 8 months RSD. Does it mean i am already in stage 3 RSD? I am soooo worried about my future. I know i should just live one day or one moment at a time. It is easy to say but difficult to do. Will i continue to get worse?
Wishing you all less pain!
Numb
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Old 05-01-2008, 08:16 AM #2
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Numb,
There are Infusions available called Pamidronate Infusions which are used sometimes for RSD when there is osteoporosis.
It takes the available calcium from the blood and draws it into the bone. It seems to have helped the bone pain and loss for some.
You need to take calcium supplements too as your blood may get low in calcium and you may get the jitters.
Good Luck
Tayla
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Old 05-01-2008, 11:16 AM #3
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Hi. Following up on Tayla's message, I have been using an updated version of Pamidromate for a couple of years now. It's called Zometa, and goes in with only a 15 minute infusion, as opposed to 3-4 hours for Pamidromate, and is supposed to be more effective at that. Ironically, while I don't have bone loss as such, I was given the drug because it has a side effect (for unknown reasons) of reducing pain in people with RSD. And in my case, it almost eliminated the worst of my "deep, bone crushing pain."

Here's an article that appeared on the subject a while ago, and was the subject of a long forgtotten thread: "Efficacy of Pamidronate in Complex Regional Pain Syndrome Type I," John N. Robinson et al, PAIN MEDICINE Volume 5 • Number 3 • 2004.

You can link to the article by going to the RSDSA Medical Articles Archive page (a great resource) at http://www.rsds.org/2/library/articl...ive/index.html and then scrolling down to the heading "Treatment," where it's listed alphabetically by author.

The only contraindication with Zometa is that it may be associated with kidney damage, so routine blood tests are required while you're on it. (I've never had a problem.)

Good luck!
Mike

Last edited by fmichael; 05-01-2008 at 08:03 PM.
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Old 05-05-2008, 07:37 PM #4
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Thanks Talya and Mike! I will check with my pain doc next time re:zometa.
I have more questions re: bone loss and bone/joint pain. Does the bone loss in RSD causes bone/joint pain? Both my pinky joints hurt sometimes. Recently, my shoulder joints also hurt too.
Your feedbacks are truly appreciated.
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Old 05-08-2008, 04:17 PM #5
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Dear numb -

All I can say is that I've never shown any loss of bone mass, either on x-ray or nuclear medicine studies, yet I had terribe "deep bone crushing pain" that was/is greatly relieved by Zometa. Go figure.

Mike
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Old 05-09-2008, 10:13 AM #6
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Quote:
Originally Posted by numb View Post
Does the bone loss in RSD causes bone/joint pain? Both my pinky joints hurt sometimes. Recently, my shoulder joints also hurt too.
Your feedbacks are truly appreciated.
Numb
I had quite a bit of bone loss in my left foot due to RSD. X-rays of both feet showed the left metatarsals were about ½ the size of the ones in my right foot. Because of this, they no longer “snugly fit together” like a well-functioning component, but simply totally separate pieces kind of floating around. Every movement caused them to move about, bang together, poke from the inside, you name it. (I had a phrase I’d use: “Every step is an adventure.”) I had surgery in 2000 to screw them all back together in to one solid mass. The foot is a different shape, now – shorter and higher – but the pain has gone down about 75%. It’s still tender to walk on, but much more usable.

I still am not sure if all the foot pain is from RSD or the skinny bones. Sort of a chicken-egg question, isn’t it? But, there definitely seems to be a relationship.

Hope you get your losses stopped.

Mike
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