DMSO and NAC - Reflex Sympathetic Dystrophy Message Board

samgm2 · 12-27-2003, 07:23 PM

I was diagnosed with RSD last week. Male, 5'-9", 170 pounds, healthy, muscular very active. Still in shock this could happen to me. I cut my a tendon on top of the middle finger of my right hand about 3 months ago. No real pain involved... Honestly debated as to whether to even go to the emergency room. Eventually I went. I expected them to put a couple of stitches in and that would be that. Instead, a week later, I am in surgery to reattach the tendon. That was the begining of the nightmare. I have been in horrible pain since. While the splint was on, I could FEEL a problem taking place. My wrist began to ache horribly. I complained to my wife. My hand was sweating like nobody's business. after the splint was removed, I found I had almost no mobility in my hand. The fingers were all swolen. The joints were in absolutely unbelievable pain. They are much better now but still hurt.

My hand is sooo stiff. It feels like the tendons are now too short. Does anyone else have this? I have been working on making a fist for over a month! I am just now barely able to do it and it is very painful. My hand goes numb when I try...

My hand felt like tendons were popping in it. In addition, I had spasms that would just not stop. In the last three weeks it became very evident that I was growing a lot of hair on that hand. Thus far, I have rejected treatments that involve additional trauma (nerve blocks). To me, this seems risky and dangerous. I have done some research on the net and despite the fact that I am now quite concerned... I have come across DMSO and NAC. It appears that DMSO is required treatment for RSD in Holland. The treatment is unfortunately not available in the United States or Canada so I am left to attempt my own treatment. Has anyone on this list attempted this treatment? Results?

Does anyone else have numbness in their fingers? Are there any success stories out there? This is really quite depressing...

Sam

sharon1030 · 12-27-2003, 07:58 PM

Hi Sam and welcome to the board,

Isn't DMSO that stuff they used on horses or something? A VERY long time ago, my doc told me to use it. I bought it, but it smelled horribly and I obviously didn't believe it was going to help so I didn't use it. Is that the same stuff? It's some kind of gel thing?

Sorry you have RSD. I've had it for over 17 years and I know how horrible it can be. I have it in my legs and left arm, but the worst are my legs. I know what you mean about the loss of range of motion. After I had knee surgeries, I had to have a manipulation done because the range wasn't coming back. I would think that would go together with RSD because of the pain.

Again, welcome and good luck.

Sharon

Lindaa · 12-27-2003, 09:21 PM

Hi Sam,
Welcome. Sorry you had to come here. I don't know what DMSO is or NAC. I also have RSD in the hand. I couldn't begin to make a fist for 2 months. I have been in physical therapy and it has helped alot. I can almost make a fist now (or could before Christmas - it has stiffed up since). My fingers swelled up and the swelling has not gone away. I have had 6 stellage ganglion nerve blocks. They did help me. They are invasive and they are scary. The first was the worst. Now I do stretches and listen to my relaxation CD before I have one. I don't get sedated (would just be more meds) & my doc says I do great during the procedure. I was doing really well until my Christmas flare-up & thought I was going to be a success story. I am having another block on New Year's eve. From everything I have read, the earlier the treatment, the better your chance of getting this into remission. What meds are you on? Are you getting better? If you are not, I would recommend that you reconsider the blocks. They are really not that bad if you have a good doc. Are going to physical therapy? Sounds like you need it. Make sure the PT knows how to treat rsd & what they are doing. I don't mean to scare you but the first PT I went to didn't know rsd (her husband's a ortho surgeon) & my rsd spread from my thumb to the rest of my hand. The PT I have now has treated alot of rsd patients & has helped me. I do exercises where I try to make a fist then stretch my hand back the opposite way. My fingers were also numb for a long time. What kind of treatment are you getting now?
Hugs & prayers,
Linda

samgm2 · 12-28-2003, 12:28 PM

DMSO is Dimethylsulfoxide.
NAC is N-Acetyl-cysteine.

Both are readily available (probably at your local vitamine store.

Both are free radical scavengers. I realize that I am new to this board, but give how ineffective blocks are, why is everyone subjecting themselves to this DRAKONIAN treatment?

It is evident that we all suffer from exceptional sensitivity to trauma. The answer that American Medicine would offer us is MORE TRAUMA?

Really, does this make sense?

DMSO is the required treatment by LAW in Holland for RSD. Most of Europe does not recognize that RSD is at ALL a condition related the autonomic nervous system. They believe it to be (through science) a condition directly resultant from inflamation.

I realize that I have no right to speak here. I am new to this and haven't suffered nearly as long as any of you, but I certainly face the same future.

From where I sit, American Medicine appears to have failed UTTERLY in this arena.

So, is the purpose of this board to keep each other sane while we fall apart?

How about a more progressive direction? How about we report remedies that work and benefit more than just psychologically from our interaction?

I will post a new message describing the treatment I have chosen. If I see a change in a couple of weeks, I will report it. I will also post the URL in that message.

Sam.

samgm2 · 12-28-2003, 12:35 PM

Hi Linda.

I have refused to undergo any blocks and am resolved to try everything else first. The nonsense that if I don't do it now, I may never have the opportunity later is just that, nonsense.

This board is proof that people undergoing these miserably blocks are not benefiting from them. Any relief is temporary and certainly no cure.

I asked for anyone to point out success stories. No one has replied.

I have elected to try the treatment done in Holland. They have tremendous success with it. It is non invasive and that in and of itself gives me more hope.

The Dutch do not believe that RSD is related to the Autonomic Nervous System. They believe (through actual scientific observation) that the disease begins strictly from an inflamitory response. This make much more sense to me.

I will post a message regarding this research and asking some question that I hope others on this board can answer.

Please visit [url]http://people.becon.org/~rsdinfo/english/therapy/drvanderlaan.html[/url]

Sam.

Quote:

Originally Posted by Lindaa

Hi Sam,
Welcome. Sorry you had to come here. I don't know what DMSO is or NAC. I also have RSD in the hand. I couldn't begin to make a fist for 2 months. I have been in physical therapy and it has helped alot. I can almost make a fist now (or could before Christmas - it has stiffed up since). My fingers swelled up and the swelling has not gone away. I have had 6 stellage ganglion nerve blocks. They did help me. They are invasive and they are scary. The first was the worst. Now I do stretches and listen to my relaxation CD before I have one. I don't get sedated (would just be more meds) & my doc says I do great during the procedure. I was doing really well until my Christmas flare-up & thought I was going to be a success story. I am having another block on New Year's eve. From everything I have read, the earlier the treatment, the better your chance of getting this into remission. What meds are you on? Are you getting better?

If you are not, I would recommend that you reconsider the blocks. They are really not that bad if you have a good doc. Are going to physical therapy? Sounds like you need it. Make sure the PT knows how to treat rsd & what they are doing. I don't mean to scare you but the first PT I went to didn't know rsd (her husband's a ortho surgeon) & my rsd spread from my thumb to the rest of my hand. The PT I have now has treated alot of rsd patients & has helped me. I do exercises where I try to make a fist then stretch my hand back the opposite way. My fingers were also numb for a long time. What kind of treatment are you getting now?
Hugs & prayers,
Linda