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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I for one am glad to see that someone is having success with a treatment. I get excited to see someone getting better and hope for all of you that it will go into remission. Just as I keep some hope for myself, but yet knowing that even though I've had this for 10 months now, there isn't much that will help most likely.
My RSD/CRPS has spread rather quickly and all I can do is hope that it spreads no more for awhile. I'm a Worker's Comp case and I have no choice in so many things, including blocks. I know the risks of it and wish to he** that I didn't have to get it done. If I don't, chances are WC will cut me off of everything without a backward glance labeling me as uncooperative. I'm already being labeled as a faker by many. If only they had to live with this and feel the pain and watch helplessly as it spreads throughout their body.
It's not just the US though that has no clue how to treat it. It's everyone, everywhere!! They just keep trying different kinds of things on everyone they can and see if it helps. We all react to the treatments differently. We all have the same diagnosis, but not all the same symptoms, some are the same too. It's hit or miss and until someone does some serious studying of this, we will never have any answers or real treatments to help us. It'll continue to be a shot in the dark on a case by case basis. I have taken my anger at being treated so shabbily and turned it toward fighting to bring awareness to all the people that I can. I want RSD/CRPS to be a household name along with all the other diseases and conditions that are so well known.
For all those who know me a bit....I have had 2 visits with my Neuro now. Sharon, the, I FINALLY Have A Good Doctor Party on board the cruise was a bit premature.
:( I saw him on the 31st and WC has gotten to him too. I am no better off now than on Nov. 19th when I saw him, yet he says that I can work part time as a hostess now!! OMG....after saying in Nov. that I wasn't ready to work. Boy, wonder how I'm going to do this when I can't stand or walk or sit for very long. If I'm made to go in, I'll do my best, but I don't think I'll get very far at all. And I'm having an EMG done on the 12th too. I shall post how it went when it's all over, or my hubby will if I can't. The MRI I had on my lower back came out ok. No slipped disks or herniated or anything else serious, just some wear and tear. Wonder how much some is...hmmmm. :) I'm only 34!! Geez.....
Anyway, I'd love to continue to see you post on how your progress is going Sam and am really hoping for you that it goes into remission to never appear again. Just as I hope that for everyone who may have a chance to have it happen to them too.

Karen
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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