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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[I]Have you ever stopped to think that maybe,

1) Your RSD diagnosis is wrong?
2) You have a very mild case of RSD?[/I]
I am going to play devil’s advocate here…

Anything is possible. Have you stopped to think that YOU may not really have RSD? Prove that you do. Prove that RSD spreads. The specialist that I visited said that he has never seen it spread - Not in over 30 years of treating RSD. Prove that doctors that think it is all in your head are wrong.

This can get circular very easily. To answer your question, the only real evidence that I can point to is:

1. I had surgery.
2. I had a very painful stay in a miserable splint.
3. I had a swollen hand when it was removed from the splint.
4. The hand sweated profusely.
5. The hand had grown about 3 times the hair of the other hand. There isn’t just more hair. It is also longer and courser.
6. My healthy hand had no hair on the fingers. The “RSD” hand had hairy fingers.
7. The hand and fingers were discolored – very red.
8. The hand was warmer than the health hand according to temperature testing done by the specialist.
9. The hand hurt horribly.
10. The joints were swollen and hurt terribly to move.

Do I have RSD? No, I have the condition that doctors label RSD. Since I have no evidence to believe this condition is caused due to a problem with the Sympathetic Nervous System. Then I obviously don’t believe that I have “Reflex Sympathetic Disorder” Syndrome.

That said, I have what I believe everyone on this board has, CRPS. A condition which is evidently (based on observation) caused by an exaggerated inflammatory response to an injury.

[I]I think your overgeneralizations could be harmful to some people here who are looking for support. You make it sound like everyone's case is the same and most of us know that isn't true. [/I]

Actually, I believe we are experiencing the same symptoms. Swelling, hair, sweating, temperature changes, stiffness and lets not forget our friend, PAIN. Emotionally, it’s also is pretty consistent; roller-coaster emotions, occasional hope, hopelessness, inevitable depression and perhaps the contemplation of suicide. Repeat Cycle.

As far as being harmful to others, that not fair. Is it not possible that blocks will injure some who might have been saved by following a path that didn’t invade their bodies before exploring non-invasive options?

It’s likely, that the overgeneralization that blocks and other invasive procedures will result in tangible injure to many.

Please note, that every one of us has already proven that for some reason, we don’t deal well with injury.

In any case, if we can't express our beliefs for fear we may be wrong, then I will ask a question that I asked before. Is the purpose of this board simply to ensure that we don't go insane before we fall apart?

[I]The other question I have is how would one ice/heat their non-RSD limb if they didn't have a non-RSD limb?[/I]

I am so very sad for your pain Sharon. My heart is breaking from all the pain that I have empathized with on this board. Maybe NAC would help a little.

Sharon :)[/COLOR][/SIZE][/QUOTE]
That nearly all the responses to my posts (given that I believe I am getting better) are negative is a sad commentary on RSDS/CRPS.

If you've been silently reading this thread and wondering how this can take place, you are not alone. I'm perplexed as well.

I am actually sad for those unfortunate to be diagnosed with this condition. Not because there is no hope, rather because most have put their faith into mediocre treatments and cannot see that in the end, it is your own body that will heal itself.

Lets not forget how most of us got here. Medical Doctors treated us!
I hope I am not coming across as blaming them. I don't.

I simply realize human limitations. The state of our understanding of the complex machine that is the human body is in its infancy.

We can only have remission? The MONSTER always lurks? How awful and insidious this beast is.

What horrible thing did I say to bring about such a fevered response? All I said was for those diagnosed within 6 month to 1 year, there MAY be an alternative and that I BELIEVED the cure to be from within. Why, because I believe that secondary problems are likely not to have manifested themselves severely yet. Muscles have not yet atrophied. Bones have not yet, lost their mass. Veins may still “remember” how to constrict and dilate…

To that end, I have committed myself as a test case. I have rejected common medical practices in the US because they have failed to demonstrate even a clear direction on the syndrome/disease let alone a cure!

What I am trusting is NOT DMSO or NAC. I’m trusting my OWN BODY to heal itself if I am fortunate enough to provide it with the necessary ingredients to assist in that healing process. Will it heal itself? Probably, I am a healthy male still in my early forties… I’ve got a good shot.

Can others heal too? Maybe – depends on their health, age, etc. The younger you are, the more likely you are to heal on your own. As we age, out ability of our bodies to effect self-repair diminishes. Other factors are involved as well - diet, environment, exercise and maybe even attitude play a role.
Should you exercise aggressively if you are unable to do so? Obviously not. Should you exercise as much as you can, yes. It worked for me.

It has been proposed that perhaps I simply had a very mild case of this disorder. I can only state that I have never felt greater pain. ANY movement was such that I could not bear it. During my course of exercise, I experience nausea to the point that I was barely able to avoid vomiting. It was more than a month before I could make a fist. My hand felt like the tendons were all too short and the PAIN... It became necessary for me to use a heating pad every night. I carried my hand from place to place. If anyone touched bumped it, I screamed in pain. The hand developed all the tell tale signs. Severe sweating, lots of hair, discoloration, etc.

I have had one surgery without benefit of any anesthesia twenty years ago because of a condition called Malignant Hyperthermia (MH). The pain of the RSD hand exceeded the pain of that surgery at times. I am not stating that in the condition that I was in, I was able to exercise aggressively. I was barely able to move my hand at all. I had build up to it and be able to face the pain.

Immobility is thought to play a major role in RSD and CPRS.

To counteract this, Exercise. Evidence that inflammation plays a significant role is quite pronounced. What is causing this inflammation? The only studies I have seen regarding inflammation are Dutch. Moreover, they have had significant success assisting the body to heal itself by scavenging free radicals. No one is claiming that DMSO and NAC repair anything. They are simply two possible candidates to assist the body. There are probably others. Someone mentioned grape seed extract…

Good Diet is next. A multivitamin has been added to my diet. I normally don't take vitamins. I am doing so now. Red Meat is thought to aid in this process. Those who have read my posts will notice that I commented that this was difficult because I live in a house with Vegetarians. I am buying organic meats only. I am also drinking Aloe Vera Juice… Yeech! Actually, I’m starting to enjoy it on the rocks!

No alcohol, down to one cup of coffee per day… No cookies…No sugar…

What I believe is inherently flawed is the assumption that we can adequately “second guess” our bodies. Interfering with a major system within one's body (namely, the autonomic nervous system) is not prudent as an “early form of treatment.” How can it be? We are not gods. It may become prudent if the body is demonstrating that it cannot heal itself - just not an EARLY form of treatment.

Who am I to deny anyone who has tried everything else, relief from pain? What I find scary is that the medical profession IMMEDIATELY prescribes this as the earliest form of treatment.

Can the medical profession cure a cold? Can it cure baldness (I wish the answer to this one was yes)? Even if you argue that they can cure a bacterial infection, surely you see that Medical Doctors have irresponsibly abused Antibiotics to a degree that has created strains of bacterium so virulent that some can kill within hours.

Prescriptions for colds have been antibiotics for the last 50 years!

Nurses, please chime in here…

Medicine should be LESS art, MORE humility and MORE real science. Are scientists infallible? NO. However before we start playing gods, lets at least have some rudimentary understanding. We should be comfortable in saying WE DON’T know.

Give your body (that amazing machine) a chance to repair itself first.

I am not asking that all of you adopt a course of treatment like mine – just consider other possibilities.

Finally, I am respectfully asking you not to simply attack my position by attacking me personally. You don’t know me. I really am a hell of a guy!

I am a successful businessman. I consider myself a man of science. I have hobbies and areas of expertise that span everything from Astronomy to telescope making, optical design, Engine Management computer design, RF engineering, Chemical Engineering, CCD camera design, and vacuum vapor deposition.

I am successfully raising my children and loving my wife faithfully who is always by my side. I home-school my children. I am hopeful that my daughter at 14 will be taking her college entrance examinations next year. I have taught my children Science, Algebra, Trigonometry, and we will be starting my daughter on Calculus tomorrow.

I attempted to give hope to others suffering from this condition that, as an intelligent man, I believe the CURE for this condition lies within.

As reward for my desire to assist other, I have been insulted repeatedly on this board.

Ask yourself if I really deserve that? Clearly many on this list have had this condition for a very long time. They have my sympathy and understanding. I have not retaliated against those who have transgressed against me.

My having this condition for less than 3 month has given me a taste of their difficult life and given me pause regarding my own future. No matter what lies in my future, I know that I have survived much greater challenges than this. Irrespective of the outcome, I will savor life until it ends.

I have been diligent in reporting my progress even when it has not been spectacular. Yesterday was a difficult day for me. I was sore.

I wasn't sure what the source of my soreness was. Could have been the RSD was spreading. It could also have been that I over exerted myself.

I am still sore today, but now believe it to be normal exercise soreness. Time will tell.

I will end with one thing more.

Thousands, tens of thousands, perhaps millions of blocks and NO CURES? No matter what you think of me, this fact alone should give you pause enough to search for alternatives.

Bad things happen in everyone's life. Only attitude affects how well we deal with the challenges that life brings on.

Want to know how to fight depression? Appreciate the beauty around you. How many of you wouldn’t take this disease over your whole body with pleasure, if it meant you could spare the life of your daughter in an automobile accident?

There is beauty everywhere, your children, spouses, parents, dogs, trees, flowers and yes, Batman forever and Moulin Rouge. We are ALL going to die we have no choice in this.

We do have the choice in HOW WE LIVE.

Nothing really worth having is easy to get. If it was, we just wouldn't appreciate it. Just part of what it is to be human.

This condition is a tough nut to crack, but even if all I have done is regain the use of my hand during the month and a half and did so without prescriptions and without invasive procedures. Isn't that worth something? Doesn’t it say anything?

Am I mad? Remains to be seen… Early results would indicate that I am probably not mad – although eccentric.

High on life! No pain can stop that. Kiss your wife. Tell her you love her. Kiss you husband. Tell him you love him. Hug your children or call them. Stroke your dog.

Keep those limbs moving.

Sam.





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