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 05-03-2009, 04:31 PM #1
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Originally Posted by RSDLynnie View Post
Just looked on internet...correct company name is Waiora. How long have you been taking? Have you notice effect lessening over time?
No i havent noticed any reduction of effects over time.... about 3 months... they work pretty well... Maybe it will help you.. Sorry about the spelling it was late and couldnt remember exactly...

Jacquelina
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Old 05-03-2009, 04:45 AM #2
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Originally Posted by AintSoBad View Post
Are there any here who Don't have sleep issues?

I use a CPap machine, sometimes I attach an O2 concentrator. (Well, I have a TBI also, so the thought is, the O2 helps the pain and healing of the brain).
Need meds to sleep.
Something to wake.

Anyone ever take Provigal? I find it to be the Devil's own drug.
(I do take aricept and the like, which are for altzheimer's), it's great for the TBI, but Provigal is just speed to me, and really cranks up the pain.

Of course, the CPAP makes me feel like I"m in an alien movie with a "face hugger" stuck on me. But, It REALLY helps me with alertness the next day! And generally feeling rested.
I've used cervical pillows, and etc...

Who has sleep woes, and what do you do for them?

Pete
asb
Hi Pete,

I really don't sleep at night. I do take klonopin 1mg at night, but it doesn't do much good. The one I have noticed since being dxed with RSD is that I sweat a lot especially at night(which I find very annoying). I also have a hard time find a comfortable position to sleep in. Pete have you tried Melatonin. Good luck

Kate
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Dew58 (05-16-2009)
Old 05-03-2009, 01:54 PM #3
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Originally Posted by AintSoBad View Post
Are there any here who Don't have sleep issues?

I use a CPap machine, sometimes I attach an O2 concentrator. (Well, I have a TBI also, so the thought is, the O2 helps the pain and healing of the brain).
Need meds to sleep.
Something to wake.

Anyone ever take Provigal? I find it to be the Devil's own drug.
(I do take aricept and the like, which are for altzheimer's), it's great for the TBI, but Provigal is just speed to me, and really cranks up the pain.

Of course, the CPAP makes me feel like I"m in an alien movie with a "face hugger" stuck on me. But, It REALLY helps me with alertness the next day! And generally feeling rested.
I've used cervical pillows, and etc...

Who has sleep woes, and what do you do for them?

Pete
asb
Hi Pete,

I wanted to comment on something is one of your other posts. When I can sleep, If I sleep in the same position to long I notice my left leg is always really stiff and hard to move. My RSD is in my left foot. What can I do to avoid having such bad stiffness? What do you do? Also I have noticed for a few weeks my left hand will cramp and be stiff and hurt, and spasm. Do you think this is a sign that the RSD has moved to my left hand? Have a nice day Pete

Kate
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Old 05-03-2009, 05:52 PM #4
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Hi Pete,

I wanted to comment on something is one of your other posts. When I can sleep, If I sleep in the same position to long I notice my left leg is always really stiff and hard to move. My RSD is in my left foot. What can I do to avoid having such bad stiffness? What do you do? Also I have noticed for a few weeks my left hand will cramp and be stiff and hurt, and spasm. Do you think this is a sign that the RSD has moved to my left hand? Have a nice day Pete

Kate

Hello Kate!
Nice to know you!

Yes, I think that your rsd might, just might be spreading a bit. It "tends" to do that, but I'm no doctor!
Ask Him/Her!

This 8 hours of our day, is so imperative, and impossible with RSD.!
I can't imagine going back to being "normal".

You sleep "well", and then ya get stiff, by staying in one position.
Last night, I fell asleep with the A/C on, AND the ceiling fan, why?
Because I can get all kinds of "abnormal heat" built up when I try to sleep.
Heck if I know why? I drink ice water, it helps just a bit....

But, I woke up today, like I was in a body cast! My friend was gonna take me food shopping. I couldn't do it! My Arms were in so much pain! (tos).
I had trouble moving at all. You all know what that's like.

Still, he visited, which, I appreciated very much, and I'll do the shopping another day.
Thank God for milk and Cereal!

But Kate,
Maybe you can rub on some Mineral Ice when you wake up?
The BEST thing to do, (and it hurts), is to MOVE the painful parts!
It's "Use it, or Lose it".
I hate to say...

So, wake up, take your meds, and start moving, as best you can!

PM Me,!

Best of wishes to ya,

Pete
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Old 05-14-2009, 05:54 AM #5
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Question Mineral Ice

Hi Pete,

What is mineral ice and where can i buy some? Does it help you? Hope you have a nice day.

Kate
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Old 05-14-2009, 10:08 AM #6
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Hi Pete,

What is mineral ice and where can i buy some? Does it help you? Hope you have a nice day.

Kate

Kate
"Mineral ice" is just an over the counter gel, that gets warm, then cool. It's main ingredient is "Menthol", so it has that smell to it.
Any drug store, or even a big super market would have it. (Look near the "Ben-Gay" type stuff).
Some folks may not like it, you can get a small jar for about 7-8 dollars.

It does help me in certain spots, a stiff joint for instance. Or, if my hands get stiff.
It's only a topical treatment, but it may give you some relief. Just another part of my "war chest".

Feel Good!


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Old 05-14-2009, 11:13 AM #7
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Originally Posted by AintSoBad View Post
"Mineral ice" is just an over the counter gel, that gets warm, then cool. It's main ingredient is "Menthol", so it has that smell to it.
That stuff (menthol gels) enhanced the pain in my case. That's why I immediately switched to regular anti-inflammatory gels, the kind that don't heat up or cool down the spot where you rub them.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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