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To Monte or whoever on RSD

Posted by wendyn on 1/10/02 at 23:00 (069610)

Monte - I believe it was you who asked a question about RSD...I am supposed to be working from home tonight - but I thought this would afford me a welcome reason to procrastinate just a LITTLE longer. Soon it will be too late to bother.

First, I am not a doctor, just a patient who reads too much. Second, I am posting from memory - so my information is only to the best of what I've heard and read, and what I remember.

Someone else posted some really good info from their doctor here on RSD - you may want to run a search to see what you come up with.

RSD stands for Reflex Sympathetic Dystrophy, and it is also known as CRPS - Complex Regional Pain Syndrome.

In a nutshell, it is an over-reaction of the sympathetic nervous system to what often begins as an injury or surgery. In my case it seems to have started following a repetitive strain type injury to my post tib tendons - and some related damage to my Tarsal tunnel area/post tib nerve It started in one foot (my right) and then flared up eventually in my left.

RSD is usually characterized by severe pain (out of proporation to the original injury) and it often causes color and temperature changes in the affected limb. The foot (for reference here) can become very cold and often bluish (in Laurie's case - or very red and hot (in my case). Although sometimes mine are cold - they hurt more when they are hot.

My surgeon explained that it seems to be related to an old evolutionary reflex - and he compared it to what happens to an injured salamander. If the salamander sustains an injury to a limb - it's body will shut down circulation to the limb - and it eventually falls off. I think maybe they grow a new one after that but I don't remember.

Anyway - he said that this problem is essentially a take off from that - the body perceives an injury - and it starts firing off all kinds of innapropriate signals that cause more problems. In my case - it causes a massive increse in blood circulation to my feet - causing the temperature change and color changes. Because of this - my doctor does not want to do surgery. They are not treating this (the RSD) in my case - evidently because it is not in an acute phase...please do not ask me to explain more because I can't! I don't know much more! I do know that it used to be worse, it hurt to have a bed sheet touching my foot.

Laurie's RSD is bad - they are treating her with spinal injections to settle down the sympathic nerve. Hopefully once that's under control they will be able to do the surgery she needs.

I believe there is some connection between RSD and TTS - but that is not to say that TTS develops in to it.

It is quite uncommon - and I have more questions about it than I do answers.

If there are any doctors or anyone else reading this who wants to jump in and add stuff (or correct me) please feel free!!!!!

Laurie - I hope you don't mind me explaining your situation...I certainly don't presume to speak for you - I just think it helps to show two fairly different examples of what's been diagnosed as the same thing.

Re: More on RSD

wendyn on 1/10/02 at 23:38 (069613)

Some VERY important reasons to think twice, threee times and AGAIN before undergoing TTS release.

_ Copied from RSD website....

Surgical procedures in neuropathic pain patients, in general, are sources of stress and produce characteristic neuro-endocrine and metabolic responses, local inflammation, and can cause disturbance of immune system function.

The body responds in opposite direction to surgery for somatic versus neuropathic pain. An acute appendicitis or cholecystitis responds quite nicely to surgery. On the other hand, surgery in the area of the extremity involved with neuropathic pain has the potential of aggravating the condition. Tissue damage from the surgical procedures results in the local release of inflammatory neurokines. This biochemical and cellular chain of events leads to up-regulation of the immune system and nervous system activation by releasing Substance P, histamine, serotonin, CGRP, bradykinin, prostaglandins, and other agents. This leads to a local vasodilation response in the area of the surgical scar, increased capillary permeability, and sensitization of the peripheral afferent nerve fibers resulting in allodynia and hyperpathia. Surgery can cause suppression of immune function aggravating the manifestations of neuropathic pain. Post-operatively, there is a tendency for dysfunction of the lymphocytic role in immune regulation. This is manifested by a decrease in number of T-cell lymphocytes and the function of the T-cell lymphocytes. The disturbance and suppression of the immune system due to surgery enhances the malignant tumor growth and metastasis . Surgery 'results in a perturbation of nervous, endocrine and immune system as well as their interregulatory mechanisms leading to compromised immunity.' This disturbance of immunity may manifest itself in skin ulcerations noted in 2 of 11 amputees referred to our clinic during 1990-1995 period. A similar case of amputee with skin ulcers has been recently reported .

There are times that surgery is unavoidable. Examples: tear of ligament or cartilage in the knee joint that would preclude weight bearing. In such patients, epidural nerve block with a combination of Bupivacaine and 20 to 30 mg Prednisolone before, during, and after surgery (with the help of epidural catheter) helps reduce the side effects of surgical trauma. Another example is extensor deformity of a finger causing useless hand which in turn aggravates CRPS

Re: To Monte or whoever on RSD

Laurie R on 1/10/02 at 23:49 (069614)

Hi Wendy , You did a beautiful job of explaining , and you can talk about me anytime , your right your's and my case are so different and most are with RSD. Janet C was the one that posted the other thread a while back on RSD . I even feel that some people may have it and not even know . Of course you know you have bad pain , but sometimes it is hard for a doctor to diagnose RSD .

And Wendy is right , I have had three sets of spinal injections to try to settle down the sympathetic nerve ... This is why when I have my foot surgery I will be having a tunnled epidural catheter put in me to control the RSD ... I don't wish RSD on anyone .....

I am having a RSD flare up right now , the pain on the pain ...Horible !!!!! I will see my PM doctor tomarrow ,so I am hoping he will do something for this pain , the pain pills I have been taking do not help this type of pain ...

Their are many great sites to read about RSD , but I think Wendy did a wonderful job explianing what it is all about . It is very complex ....

My very best to all...Laurie R

Re: To Monte or whoever on RSD

Janet C on 1/13/02 at 15:47 (069875)

RSD is not as rare as once thought.... I've read that it affects 5% of the population! I often wonder how many people have it, and go unDx'ed?

Re: you sound like Alan K :-)

elliott on 1/15/02 at 12:48 (070042)

No one has pointed out that in the switch of names (not yet universally accepted) from RSD to CRPS, there is an accepted protocol of subdividing CRPS into two types: Type I (RSD) and type II (causalgia). Or in plain English, Type I is without nerve lesion (i.e. injury), Type II is with nerve lesion. The reason for the subdivision is, as they are now aware, that treatment is likely to differ depending on which subgroup. Physical therapy apparently has had quite a bit of success for many I think type I CRPS patients. CRPS research is till in its infancy, so expect some advances in the future.

---

Re: More on RSD

wendyn on 1/10/02 at 23:38 (069613)

Some VERY important reasons to think twice, threee times and AGAIN before undergoing TTS release.

_ Copied from RSD website....

Surgical procedures in neuropathic pain patients, in general, are sources of stress and produce characteristic neuro-endocrine and metabolic responses, local inflammation, and can cause disturbance of immune system function.

The body responds in opposite direction to surgery for somatic versus neuropathic pain. An acute appendicitis or cholecystitis responds quite nicely to surgery. On the other hand, surgery in the area of the extremity involved with neuropathic pain has the potential of aggravating the condition. Tissue damage from the surgical procedures results in the local release of inflammatory neurokines. This biochemical and cellular chain of events leads to up-regulation of the immune system and nervous system activation by releasing Substance P, histamine, serotonin, CGRP, bradykinin, prostaglandins, and other agents. This leads to a local vasodilation response in the area of the surgical scar, increased capillary permeability, and sensitization of the peripheral afferent nerve fibers resulting in allodynia and hyperpathia. Surgery can cause suppression of immune function aggravating the manifestations of neuropathic pain. Post-operatively, there is a tendency for dysfunction of the lymphocytic role in immune regulation. This is manifested by a decrease in number of T-cell lymphocytes and the function of the T-cell lymphocytes. The disturbance and suppression of the immune system due to surgery enhances the malignant tumor growth and metastasis . Surgery 'results in a perturbation of nervous, endocrine and immune system as well as their interregulatory mechanisms leading to compromised immunity.' This disturbance of immunity may manifest itself in skin ulcerations noted in 2 of 11 amputees referred to our clinic during 1990-1995 period. A similar case of amputee with skin ulcers has been recently reported .

There are times that surgery is unavoidable. Examples: tear of ligament or cartilage in the knee joint that would preclude weight bearing. In such patients, epidural nerve block with a combination of Bupivacaine and 20 to 30 mg Prednisolone before, during, and after surgery (with the help of epidural catheter) helps reduce the side effects of surgical trauma. Another example is extensor deformity of a finger causing useless hand which in turn aggravates CRPS

Re: To Monte or whoever on RSD

Laurie R on 1/10/02 at 23:49 (069614)

Hi Wendy , You did a beautiful job of explaining , and you can talk about me anytime , your right your's and my case are so different and most are with RSD. Janet C was the one that posted the other thread a while back on RSD . I even feel that some people may have it and not even know . Of course you know you have bad pain , but sometimes it is hard for a doctor to diagnose RSD .

And Wendy is right , I have had three sets of spinal injections to try to settle down the sympathetic nerve ... This is why when I have my foot surgery I will be having a tunnled epidural catheter put in me to control the RSD ... I don't wish RSD on anyone .....

I am having a RSD flare up right now , the pain on the pain ...Horible !!!!! I will see my PM doctor tomarrow ,so I am hoping he will do something for this pain , the pain pills I have been taking do not help this type of pain ...

Their are many great sites to read about RSD , but I think Wendy did a wonderful job explianing what it is all about . It is very complex ....

My very best to all...Laurie R

Re: To Monte or whoever on RSD

Janet C on 1/13/02 at 15:47 (069875)

RSD is not as rare as once thought.... I've read that it affects 5% of the population! I often wonder how many people have it, and go unDx'ed?

Re: you sound like Alan K :-)

elliott on 1/15/02 at 12:48 (070042)

No one has pointed out that in the switch of names (not yet universally accepted) from RSD to CRPS, there is an accepted protocol of subdividing CRPS into two types: Type I (RSD) and type II (causalgia). Or in plain English, Type I is without nerve lesion (i.e. injury), Type II is with nerve lesion. The reason for the subdivision is, as they are now aware, that treatment is likely to differ depending on which subgroup. Physical therapy apparently has had quite a bit of success for many I think type I CRPS patients. CRPS research is till in its infancy, so expect some advances in the future.

---