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...
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.
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,
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.
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.
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,
Sorry you had to join us but you will find many knowledgable
and compassionate people on this board. And if they don't know the answer, they will try to find it. We are all in this together.
I don't know of any Docs using DMSO. I think you'd really have to find an alternative med guy for that one.
It is a paint solvent which has antiinflamatory properties
and smells like garlic on the skin. Also purity is a big issue.
But it does have a relative if you are interested that has
similar properties -MSM (methyl sulfonyl methane) and is widley available at health food stores--both are sources of sulfur.
I guess I'm going to echoe everyone else. I know blocks seem scarey but its worth a shot. It may work for you or it may not but you are not wedded to it. You may just calm it down.
Now the EMG business. Half of the RSD diagnosis is ruling
out what it is not. They will need the info from that to do the blocks. Its takes a while to get the test. And its not half as bad as the thought of it. Believe me!
If you should get worse and I don't want to scare you but it can very quickly. ---And suddenly you decide on a block--
you will be stuck in limbo waiting for the EMG. before they can do anything.
In the meantime I wish you a less painful time. Susie L
I had my husband read your post & he is now researching DMSO. Very interesting. I will ask my pain doc about it. That is one of the purposes of this board - to find out what is helping others. As far as blocks go, they have helped me. After so many days the pain starts creeping back ( it wasn't as bad as it was to begin with until my Christmas flare-up). I have a theory that maybe I should get them closer together & then they might have a cumulative effect - such as not giving the pain a chance to start creeping back. I'm going to ask my doc about that.
I think you might be interested in what Vic, from another rsd board, has to say. He has researched and done a paper which has different theories about what rsd is. It's very interesting. His e-mail is vicc [removed]. He got me started on grape seed extract.
As far as success stories goes, when people get better they don't hang around the boards. My PT made me promise to do that. She says that her patients have just gone on with their lives. I've looked for them, too.
I hope that whatever treatment plan you chose works for you. Please keep us informed.
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I guess, I just don't agree. Blocks are NOT worth a shot as so many on this board have stated though they continue to get them. Their side effects are quite serious. Repeated blocks can result in very serious conditions. This is a rude thing to do to one's body.
HOW DO YOU KNOW that whole body RSD is not related to traumatizing the ganglia at the neck?
We as a group (RSD sufferers) are all CLEARLY more susceptible to over reaction to minor injuries... A surgery to a to a single finger tendon has resulted in a near paralysis of my hand upon removal of that miserable splint. Why would I risk my whole body? Sorry, it is not worth a shot. I don't gamble with my health.
Tread softly when it comes to your body. Medicine today is in its infancy. Run don’t walk from a doctor anytime you are handed a disease ends with SYNDROME.
Clearly, many on this board have employed the use of blocks and they haven’t worked. If they did, they would work for everyone.
In fact, I am not convinced that the Autonomic Nervous system is involved at all. I have spent DAYS searching where this theory has support in actual science and simply can't find ANY hard evidence.
The growth of hair would indicate that hand "thinks" it is cold. On the contrary, my RSD hand is now COVERED in hair, but is quite hot and has been! In fact, I had severe sweating while the hand was in the splint and used to try to blow air into the splint to cool it. My body needed the additional insulation? I think not.
On the other hand, there can be NO DOUBT as to the inflammation that I am experiencing. The vessels are clearly dilated.
What manifestations would result from this? One possible explanation that makes much more sense is that dilation of blood vessels near the surface of the skin would feed hair follicles more... More hair.
Dilation internal to the hand would cause swelling of tissue and can cut off blood supply to muscles, nerves, joints, etc. Ever lose a tooth because a dentist didn't grind a filling down? I have. The tooth ends up bearing too much of a load. This causes trauma under the tooth. Swelling is next, followed by a decrease of blood supply to the tooth. The nerve can't get blood. The nerve dies, the tooth dies. You are scheduling your ROOT CANAL a couple of weeks later.
As far as not wedding to the block. I don't agree. Just how much trauma do we need to cause a serious reaction. I think we have all demonstrated that we don't need very much.
I am not scared of RSD getting worse. If it is going to get worse, it will with or without a block.
Blocks are not universally accepted you know… In fact, from what I have been able to gather, only the US and Canada use this method of treatment.
Blocks are simply too much of a gamble. I won’t do it. Not even for a diagnosis. I guess, I am just not that impressed with the knowledge of physicians. They are not scientists. They "PRACTICE" their "ART".
They will have to practice somewhere else and not on me. My body is much more likely to help itself than a physician is. I will do my best to make sure it is supplied with what it needs to affect that help. In any case, millions of years of evolution are on my side. A decade of nonsense is on the side of the block.
As for a "diagnoses", WHO cares? A diagnosis would mean something if they had a cure. They don't! For all intents and purposes a diagnosis is the furthest thing from a cure. In fact, it is a SENTENCE!
Even if we manage to have a REMISSION, we are always afraid of a relapse.
How many doctors can cure a cold? Your body can!
I trust my body much more than I trust a doctor. As an Engineer, Scientist, Astronomer, and Physicist, I know how little we as a species know and understand. It's the blind leading the blind out there.
Conjecture is king and most of us are loyal subjects.
I appreciate your comments and concern by the way and I now graciously come down off my “soap box” to thank you.
It may very well be that I am in denial, however, time will tell. If things do get worse, I will make the best of my life regardless of what my fate is.
Destiny, while I admire your strength of character and your resolve to own your life. Your story is more a testament to the strength of the human spirit. You can walk, buy are in pain.
You yourself admit that you are not cured.
I would like to hear from one person who no longer has this condition who feels they have been saved by blocks.
Shouldn't we expect definitive results from our treatments? Look folks, if you are turning to blocks because you haven't been given a better option, you have tools now that no one in history has ever had before. COMMUNICATION! How much power is there in thousands of us coming together and sharing knowledge that was impossible 5 years ago?
The Hypothesis that this condition is caused by the autonomic nervous system does not appear to hold water. Where is the evidence?
It is well and good to say that we need to take charge of our treatment but in what way are we doing that?
I am sad to see so much depression on this board. It is evident by the exhaustion in the letters. Again, I know I am new to this, but I don't believe that my questions are out of line.
I do know of one woman who had RSD, had three/week blocks and now is RSD-free. Take it for what it's worth. Doesn't help me. I still have it and I did tons of blocks. You asked if anyone knew any success stories. There's one.
I also know of about 5 people who are RSD free following blocks. Perhaps the reason you dont see more of those people on these boards is because they no longer have RSD and dont need to find a support group such as this one.
Everything with RSD is trial and error and what works for one person does not work for another. The specialists I have seen readily admit that they do not fully understand CRaPS, nor why some treatments work. CRaPS affects everyone differently and so do the treatments tried for it. However for many, and obviously this does not include yourself, the sufferers would rather try these treatments rather than live wondering if it may have been their solution.
Blocks are not for me, however they clearly do help some and have been shown to put many people into (permanent) remission when done early enough in a series so as to break the cycle of pain that has been set up. But this can only work while the CRaPS is still 100% SMP. This also seems to work better for CRPS Type I (RSD) than for CRPS Type II (causalgia).
You have made it clear that you would rather try alternative methods of treating your CRaPS and report your success here, and I truly applaud that.. the response to your heating and cooling of opposing limbs is interesting and something which I will follow up on, but please, desist from totally throwing cold water over "american medicine" as you call it. These treatments have helped many people on this board, both physically and emotionally, and for some any relief they can find can be the difference between choosing life and death. Suicide is a very real risk with CRaPS. The mind is a very powerful tool and I would rather support any person who is getting some benefit from a treatment, real or perceived.
For the first time in my life I wish that I believed in taking medicines and that I was prone to the placebo effect! I wouldn't complain about having a lowered pain level, even if it was just 'all in my head', would you?? Trust me, if your pain level is high enough after a few months you will be screaming for relief any way you can get it.
I too have searched high and low for other forms of treatment for CRaPS and many nations have very different treatments, including calcitonin injections, DMSO, NAC etc. I would be happy to hear how your research in these areas go.
Just a quick reply Sam, but first a welcome to the Boards.
My son David contracted RSD after a minor fracture five years ago. His PT was Dutch, and she did much to help him gain movement in his wrist. Unfortunately after a Guanethidine block his RSD spread to both legs and then his left wrist. Since then we have tried to keep his treatment as conservative as possible. For the most part medication had kept his pain levels around four and five. Moe recently his chest pain necessitated some blocks under his clavicle. (unfortunately they haven't stopped the chest pain) David's RSD is now SIP, and he has refused further blocks. Here in the UK research is looking at HBOT and Vit C in large doses. Regarding HBOT I can confirm that one young woman in her early twenties has gone from a wheel chair to walking with a stick. There is a centre near where we live which uses hyperbaric oxygen treatment for MS sufferers. I am encouraging David to try it out.
We all share our experiences here on the Boards, and sometimes we can only offer a "listening ear" and support. Sometimes it's info that we have found, and often it's shared laughter. Do post,we all need to share our thoughts and opinions within the bounds of helping each other. We are all the poorer, if we do not.
I have been using DMSO and NAC for the last three days. While it is too early to make a definite ascessment. The following is what I am now experiencing:
My hand is now considerably stronger. I have been using a dynabee. It is a gyroscopic hand exercise tool. I am now up to 10,000 RPM in that hand and am able to exercise the hand at that rate for for 10 minutes at a time.
I am now bench pressing 170 pounds. Is there pain when I do this? yes - considerable. I got nausious during one exercise session, the pain was so bad.
Is the pain decreasing? Yes.
I plan on bench pressing 200 pounds by next week.
The difference in strength between the two hands is approximately 50%.
I find the DMSO somewhat irritating to the skin, but not horrible. It feels like pepper on my hand. It does not have a terrible smell. I mixed the DMSO, 70% - 30% aloe vera juice.
The hand is also less sensitive to touch. Hard to describe that one. I used to say that the skin hurt. If it does anymore, it is only a little.
While in Holland they use EITHER DMSO or NAC, I am using both. I am taking 600 mg if NAC, 3 times per day. It's just a form of amino acid. Obviously no chance of harm from that.
I have a very specific regiment that I am using. I am making careful notes.
I am now typing at about 60 words a minute. There is no pain as I do; only very mild discomfort.
My hand is still stiff in the morning, but I am able to make a fist in about one minute and it loosens up after that.
I still have numbness in my finger tips. They tingle. I believe I may have nerve damage as well. This is certainly no sympathetic nerve disorder. The nerves were probably starved for blood while my hand was swolen.
Pain no longer exists if the hand is stationary.
Only very fast repetative motion is uncomfortable.
The RSD hand is now only slightly redder than the good hand. The swelling has all but diappeared.
The joints in the fingers are still enlarged.
My wrist feels much better.
I am doing wrist curls with a 50 pound weight.
Normal for me would have been about 100 pounds.
I have seen a "specialist" on RSD here in Colorado. He is known as "THE GUY" to see when it comes to RSD, supposedly, nationally renowned. He says he has been treating RSD for 30 years.
This is what he told me:
1. My chances for the Blocks providing me permanent relief with the first few injections are about 10 percent.
2. RSD does not spread.
3. Exercise is the most important thing that I can do to cure RSD.
4. He has people coming in for injections years after they have been diagnosed and treated.
5. Many of those people come in when the whether turns colder.
6. He was ready to do my block but when I informed him of my reservations, he informed me that waiting was not a big deal.
7. He also informed me that engineers were very difficult patients, because they need a rational reason for everything.
I guess if I had received the block, I would be reporting that the block helped. Since I didn't receive the block, I will report that it didn't.
If only such a small percentage are "helped" by the blocks, how do you know that these people would not have recovered on their own?
How do you know it was not related to diet or exercise or both?
How do you know that the block didn't actually hinder their healing process?
Where are the double blind studies regarding blocks and their effectiveness? If they exist, I haven't seen them. Any assistance to help me find these studies would be greatly appreciated.
Ali, I have no intention of adding to the misery of the people on this board. I have been struggling to maintain my own level of motivation to beat this disease. I have had a couple of days when I felt it was hopeless and was quite frankly considering what the world would be like without my right hand.
It may very well be that I will seek the blocks after the pain gets worse. It may also be that a month from now, I will be RSD free. If that's case I would expect this will provide hope to others on this board.
For those reading my posts... Please don't think that I believe there is no cure for this condition. The fact that people ARE living RSD free lives after having this miserable condition should motivate ALL of us to find the common factors. Blocks are NOT common.
Many receiving blocks still have the condition. Most for many years. Rather than depression, I propose action.
It is very unfortunate that those who have recovered have chosen to leave the rest of us only with the consolation that it is possible to get better but without the method they used.
I would appeal to any who have recovered completely from this disease to PLEASE tell us their methods for doing so. I am SURE a common thread exists. Perhaps diet, Type of Exercise, Motivation, Time, supplements?