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 11-04-2013, 03:32 PM #11
RSD ME RSD ME is offline
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Thanks Vrae. You're right about it passing too. It do feel physcially and mentally a little better today and those thoughts I had are gone. I know they may come back again when anther bad flare comes, but I could never follow through because of my loved ones and the faith I have in God. I know He's with me, but it is very difficult still. I sometimes feel I'm loosing my mind too when I get flares too. And I get terrible panic attacks. It's just awful, but I'm going to try to remember that This too shall pass. My fear is that someday it won't pass, but hopefully that won't happen. That again is where my faith steps in, but rsd puts you through a true test of faith, that's for sure. Thanks again to all of you for your kind words and for lifting my spirits.
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Old 11-04-2013, 03:39 PM #12
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Originally Posted by RSD RENEE View Post
My fear is that someday it won't pass
As my momma used to say "Don't borrow trouble" lol

Oh those momma's and their sayings, but I think this is a good one.
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Brambledog (11-04-2013), RSD ME (11-04-2013), zookester (11-04-2013)
Old 11-04-2013, 03:44 PM #13
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Ditto again what Vrae said!!

Yes, I will keep you both posted on the infusion therapy. I have more hope in the 5 day treatment but, will do this in the mean time as pain is high and spread has been aggressive.

Hang in there Renee.. its hard sometimes to pull ourselves out of the toilet bowl but.. you've just got to dig deep to find the courage and strength to keep getting up everyday. When my life was facing something different and I didn't know if I would live or die a friend told me to focus on 15min blocks instead of 24hrs.. just doing that made it easier when I was in that same darkness questioning my own will to survive.
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Old 10-06-2021, 01:09 PM #14
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So sorry you are suffering. Forget Western medicine. I can tell you it's trying to spread. The doctors know nothing and will refuse to provide pain relief.
** find out what you need to do to get pain relief. I'm screwed, I've seen 18 doctors all were worthless regarding my issue. Diet is essential. Stop eating meat, fish is OK. No butter or dairy. No sugar. No food that is frozen, in a box or can. Organic is preferred. Best thing you can do is see Chinese acupuncturist. Save your money go to Italy for neridronate infusions. I was in wheelchair (left foot leg +right foot) and can walk now. Happened 2 months after returning. Diet is from Italian doctor. Treatment $14,000 + airfare. Contact Medical Tourism of Italy. They patented their drug neridronate which works. Food and lodging included + interpreter and ride to clinic from hotel. It was spreading and if it were to get in organs the next thing for me would have been suicide. I have hope now and the rest of my life to pay off debt. Do it now before it gets worse. Best of luck, feel better soon. S

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Old 10-16-2021, 11:02 AM #15
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Quote:
Originally Posted by Sandoggie View Post
So sorry you are suffering. Forget Western medicine. I can tell you it's trying to spread. The doctors know nothing and will refuse to provide pain relief.
** find out what you need to do to get pain relief. I'm screwed, I've seen 18 doctors all were worthless regarding my issue. Diet is essential. Stop eating meat, fish is OK. No butter or dairy. No sugar. No food that is frozen, in a box or can. Organic is preferred. Best thing you can do is see Chinese acupuncturist. Save your money go to Italy for neridronate infusions. I was in wheelchair (left foot leg +right foot) and can walk now. Happened 2 months after returning. Diet is from Italian doctor. Treatment $14,000 + airfare. Contact Medical Tourism of Italy. They patented their drug neridronate which works. Food and lodging included + interpreter and ride to clinic from hotel. It was spreading and if it were to get in organs the next thing for me would have been suicide. I have hope now and the rest of my life to pay off debt. Do it now before it gets worse. Best of luck, feel better soon. S
I doubt changing what you eat will do a thing for this type of pain. Please don't spread these kinds of things. RSD is a serious condition.

Bisphosphonates are also seen as a means to combat recalcitrant RSD here in Belgium. But you need to go to a rheumatologist.

Just go see the "right" doctors, neurologist, rheumatologist, pain specialist

I saw a lot of different doctors as well; key is not to give up. I am sure if you contact a support group (rsds.org) that they can provide you with a couple doctors that *know* this condition inside out.

No reason to suffer in silence; no reason, at all!
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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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Old 10-03-2022, 06:54 AM #16
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I have CRPS in right foot, but left foot is starting to mirror also. This resulted from a surgery where the specialist didn't use a nerve block.

Always in a bad temper from pain, and can't walk normally; in fact, loathe to walk at all.

Pain doctor was of no help after many appts spanning half a year; his suggestion was canibus spray and pregabalin.

Is there anything that can be done since my future as a cripple with burning feet is unacceptable.
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Old 10-08-2022, 05:19 PM #17
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Originally Posted by Suze54 View Post
I have CRPS in right foot, but left foot is starting to mirror also. This resulted from a surgery where the specialist didn't use a nerve block.

Always in a bad temper from pain, and can't walk normally; in fact, loathe to walk at all.

Pain doctor was of no help after many appts spanning half a year; his suggestion was canibus spray and pregabalin.

Is there anything that can be done since my future as a cripple with burning feet is unacceptable.
Most of us have to find what works for us.

Generally this means you have to find a way to not think about the pain. This sounds absurd since the pain can be so severe and so "in your face" but this is usually going to be one of the most important means of dealing with it. Gabapentin might help take the edge off. you need to limit stress since there's usually a close connection. Things like diet can be important but not for me.

Check some of the old threads. I found grape seed extract helped as does Gingko biloba. Staying warm helps a lot. Stay active and get as much exercise as you can tolerate.

there are dozens of thins that have helped me and many more that have helped others. If I can keep my stress levels low I barely experience RSD at all any longer. My hand is still weak and sensitive but it's getting stronger now.

Good luck. Most remissions happen in the first two years so this is when you need to really address the problem. But even after this there is partial remission and learning to live with it.
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