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 09-13-2009, 09:09 AM #21
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We are just discussing this on the PN forum.

I am going to try it too, since winter is almost here.

http://healthifeet.com/

This might help those who struggle with "cold" and poor circulation.

The l-arginine and magnesium in it are known vasodilators. But I cannot endorse it yet. I just thought I'd put it up here for those wanting a non-invasive thing to help with comfort.

Here is an edit... I am finding different ingredients listed on various websites today for this product... but it appears that capsaicin is in it.
For those who cannot tolerate pepper extract...which may cause burning, then this is not for those patients.
Here is our thread:
http://neurotalk.psychcentral.com/thread102849.html

This one has arginine with NO capsicum (pepper).
http://www.butaicosmetics.com/en/foot_cream.aspx
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Last edited by mrsD; 09-13-2009 at 10:01 AM.
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Old 09-13-2009, 10:06 AM #22
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Default No Biofreeze for cold rsd

Quote:
Originally Posted by mrsD View Post
We are just discussing this on the PN forum.

I am going to try it too, since winter is almost here.

http://healthifeet.com/

This might help those who struggle with "cold" and poor circulation.

The l-arginine and magnesium in it are known vasodilators. But I cannot endorse it yet. I just thought I'd put it up here for those wanting a non-invasive thing to help with comfort.

Here is an edit... I am finding different ingredients listed on various websites today for this product... but it appears that capsaicin is in it.
For those who cannot tolerate pepper extract...which may cause burning, then this is not for those patients.
Here is our thread:
http://neurotalk.psychcentral.com/thread102849.html

This one has arginine with NO capsicum (pepper).
http://www.butaicosmetics.com/en/foot_cream.aspx
Hi thanks for this, I went to PN and read the thread, I did want to mention that biofreeze is a big NO for my cold rsd, the initial "cold" feeling it creates is unbearable for me. It really increases my pain.the capsaican may be different?
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Old 09-13-2009, 10:23 AM #23
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PNers mostly have burning symptoms, or numbness.

So the Biofreeze is good for that. My major symptom is burning too. Biofreeze has menthol in it which activates the cold sensing nerves, which overrides the burning signals.

I find capsaicin horrible...many of us (PNers) cannot tolerate it.
It was hard to find in the ingredient list of Healthifeet because it is abbreviated.

I believe the website has a free trial sample. I think that would be the way to go with it.

Arginine can be used orally, and there are magnesium creams available too.
example:
http://www.kirkmanlabs.com/ViewProdu...ct_ID@124.aspx

Arginine is included in erectile OTC products for men, because it dilates blood vessels. It might help with RSD vasoconstriction, but that would be an "experiment" you'd have to be willing to try it orally. It is also available in a powder called ArginAid. I've seen it used for patients in long term care who have resistant healing of bed sores, etc.
http://www1.mooremedical.com/index.c...tail&PID=13004

Taking too much arginine orally however, may set off shingles.
Arginine is a viral stimulant, for replication. L-lysine is the balancing amino acid for that complication.

So I like the idea of a cream. I'll keep looking for one without that pepper extract.
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Old 09-13-2009, 07:02 PM #24
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Hi Mrs. D.
I hope this doesn't sound stupid but could you tell me the difference between hot and cold RSD. I have had RSD for about a year now and my doctor never mention either or to me.
Thanks,
hopeful:
Quote:
Originally Posted by mrsD View Post
PNers mostly have burning symptoms, or numbness.

So the Biofreeze is good for that. My major symptom is burning too. Biofreeze has menthol in it which activates the cold sensing nerves, which overrides the burning signals.

I find capsaicin horrible...many of us (PNers) cannot tolerate it.
It was hard to find in the ingredient list of Healthifeet because it is abbreviated.

I believe the website has a free trial sample. I think that would be the way to go with it.

Arginine can be used orally, and there are magnesium creams available too.
example:
http://www.kirkmanlabs.com/ViewProdu...ct_ID@124.aspx

Arginine is included in erectile OTC products for men, because it dilates blood vessels. It might help with RSD vasoconstriction, but that would be an "experiment" you'd have to be willing to try it orally. It is also available in a powder called ArginAid. I've seen it used for patients in long term care who have resistant healing of bed sores, etc.
http://www1.mooremedical.com/index.c...tail&PID=13004

Taking too much arginine orally however, may set off shingles.
Arginine is a viral stimulant, for replication. L-lysine is the balancing amino acid for that complication.

So I like the idea of a cream. I'll keep looking for one without that pepper extract.
Quote:
Originally Posted by mrsD View Post
We are just discussing this on the PN forum.

I am going to try it too, since winter is almost here.

http://healthifeet.com/

This might help those who struggle with "cold" and poor circulation.

The l-arginine and magnesium in it are known vasodilators. But I cannot endorse it yet. I just thought I'd put it up here for those wanting a non-invasive thing to help with comfort.

Here is an edit... I am finding different ingredients listed on various websites today for this product... but it appears that capsaicin is in it.
For those who cannot tolerate pepper extract...which may cause burning, then this is not for those patients.
Here is our thread:
http://neurotalk.psychcentral.com/thread102849.html

This one has arginine with NO capsicum (pepper).
http://www.butaicosmetics.com/en/foot_cream.aspx
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Old 09-14-2009, 03:51 AM #25
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I cannot help you there, hopeful in the way I could if I had RSD.

RSD seems to have a mixed presentation of vascular and nerve problems. Some patients may have more of one type than the other.

PNers typically only have nerve damage. Either the sensory endings or the axons may show damage or death.

Both RSD and PN develop a central pain issue, where areas of the brain get hardwired into pain perception. Sort of like phantom limb phenomenon in amputees.

With PN...there are hot and cold sensory fibers in the feet and hands, which then start to fire too much or too little.
For some reason burning sensations are more common with PN. That is why menthol works well for us.

With RSD, you may have circulatory changes, hence the color changes that accompany pain. With decreased blood flow, you can then damage the sensory nerve endings.

And I think that some patients may have BOTH conditions.

The people here who report COLD intolerance, lower limb temperature may find the Healthifeet product helpful. There are thermo photos on that website to show improved circulation.
But for people who have burning pain... the pepper extract in this product may increase burning sensations.

I think RSD is a combination disorder. There might be an inflammatory cascade from the original injury that travels around and affects the blood vessels, and the resulting lack of oxygen and build up of toxins, then damage sensory nerve endings.

This is why some studies show calcium channel blockers and adrenergic blockers helpful early in the disorder. It appears to me that RSD is very complex, and this is why it is hard to understand and why doctors seem so clueless about it.
There is an analogy coming forward now about multiple sclerosis. The new thinking is that it is a two fold disorder, with inflammation at the beginning, followed by damage from another mechanism as time passes. So as the understanding of the disease progression increases, then perhaps treatments can be better applied as well.

And I think this is why some people who start with PN, may eventually end up with RSD as well.
And the reverse. RSD patients can develop diabetes, and have diabetic PN, or can be poisoned and have nerve damage that way. One needs to keep an open mind about this disorder, since other things can happen to you that are independent of the RSD itself. There is also new evidence coming out about Fibromyagia and peripheral trauma. So it is likely some RSD patients may have Fibro as well. Fibro overlaps with PN too.
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Old 09-14-2009, 06:40 PM #26
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Thanks for the info mrs D. I think I have a combo of both RSD and PN. I had a postive small nerve skin biopsy before I was diagnosed with RSD. I have terrible burning that drives me crazy. I am going to try the biofreeze and see how that works.
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Old 09-16-2009, 05:37 AM #27
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Quote:
Originally Posted by CRPSbe View Post
Some people actually move more slowly or even faster through the stages but it's also possible to skip a stage. It also largely depends on treatments given and how you react to them. That's why RSD is so different for everyone.
You are so right,
Soon after my injury I developed a redened hot RSD limb.. but I would say within a month my right ankle was cold and blue, RSD spread to both legs and they were ice cold.

After 14 lumbar sympathetic nerve blocks I was left with what my anesthesiologist called a virtual sympathectomy from too many blocks.. this created a temporary HOT RSD that has after 3-4 years reverted to as cold again sometimes as it was before the blocks.

My RSD spread full body and I can say that all areas cool and heat on their own particular whim which makes no sence (one arm warm, one cold,etc).
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Old 09-16-2009, 05:51 AM #28
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Quote:
Originally Posted by hopeful View Post
Thanks for the info mrs D. I think I have a combo of both RSD and PN. I had a postive small nerve skin biopsy before I was diagnosed with RSD. I have terrible burning that drives me crazy. I am going to try the biofreeze and see how that works.
Hopeful
Whoa.. Biofreeze and RSD, I would do my research first.
Don't get me wrong I know nothing about this procedure but the name itself tells me go very cautiously please Hopeful.

Ice and cold are very bad for RSD!


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Old 09-16-2009, 06:42 AM #29
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Since this thread mentions l-arginine... I found this yesterday on the net:

http://www.drignarro.com/notestimonials.php

http://www.drignarro.com/press.php

His claim is that using l-arginine and l-citruline can increase nitric oxide in blood vessels, and lead to improved circulation, and less oxidative damage. (his mixture has also lowered blood pressure).
Here is an independent paper on this subject:
http://www.pubmedcentral.nih.gov/art...?artid=2291275

And to Sandra--- Biofreeze is not "cold". It is a gel with Ilex in it and menthol. It reduces burning sensations from nerves in the periphery. It is commonly used in physical therapy which is where I found it. Some therapists mix it 1/2 and 1/2 with the ultrasound lubricant, when the ultrasound treatments are done.
Ilex is an herb also called Yerba Mate, which is a tea from S. America, used there more than coffee socially. It is very high in antioxidant value, and I believe it is really the most important ingredient in Biofreeze. Our FDA however, makes them list it as an inert ingredient, because of the "rules" of drug claims we have here.

Patients with cold intolerance RSD may not like the cool feeling. But I don't believe the gel itself changes any temperature in the skin. Biofreeze is more likely to be acceptable to those with hot burning RSD...which more resembles PN. Many of us PNers find it very comforting when nothing else will stop burning that goes on all night!
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Last edited by mrsD; 09-16-2009 at 07:45 AM.
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Old 09-16-2009, 08:52 PM #30
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Last time I had my temps checked my RSD foot was in the lower 60's. They were very surprised.
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