My fight and experience with RSD

My fight and experience with RSD.

While assisting a friend with the installation of a furnace, I severed a tendon in my middle finger against the edge of some sheet metal. The cut bled profusely for a few minutes, but the pain was not that severe. A few hours later, when I finally decided that maybe this cut warranted a trip to the emergency room, I found out that I had completely severed the tendon. Bad news. No big deal however, I'm a super fast healer...

A few days later, I was in surgery, getting the tendon reattached. I had the choice of going under for the surgery or having it done with a local. I opted for the local. The surgeon proceeded at lightning speed. It was over in about 15 minutes albeit a very painful 15 minutes.

The surgery went as expected, my tendon was reattached, but I was told to keep it immobile as even minor movements could tear the weak stitches holding the tendon together.

I did my best not to move anything. I was scheduled to be the best man in my partner's wedding about 10 days later. The good news was that I would be a new splint that would be less constrictive than the "after surgery monstrosity" they had on me. The wedding was to be in Sacramento (about a 1000 miles away). We had previously rented a 30' RV and I wasn't about to let a little thing like a tendon, keep me from driving this big beast. Off we went...

It was a long trip, but we got to see, Bryce Canyon, the Grand Canyon, Death Valley, and Yosemite. A great trip, followed by a great wedding. Because of the fact that I was driving, I opted not to take the pain medication except in the evenings when we turned in.

During this time, my hand ached and sweated profusely and smelled bad, but I continued to do my best to ignore it and give it rubbing alcohol baths in order to deal with the smell. All this time, I was careful not to move my hand at all. Of course it hurt so much when it moved accidentally, I had no desire to try.

Every night, the pain worsened. I wrapped the hand in a heating pad and kept it warm. The pain was, at times, unbearable. Being the eternal optimist, I "knew" that once I could remove this splint, everything would be fine.

Finally, the big day. It had been exactly one month since the surgery. I went to my first physical therapy session. I was informed by the therapist that I was scheduled to start "light" therapy. This would involve my attempt to move my fingers and try to both open and close my hand. She gently removed the split. The pain was unreal. I was able to move my fingers only a few degrees. The wrist ached. I winced in pain as I attempted the motions. The hand and fingers were swollen. The splint was adjusted to fit the hand better. I was given a list of exercises and told to try to do these moves and exercises. After 6 weeks, I was to begin moderate therapy and after 8 weeks, I was to begin more vigorous therapy. I was to wear the splint at all times when not exercising. At eight weeks, I was to wear the splint only when I slept.

THE SPLINT HAS TO GO

Off I went, realizing that it would be a challenge, but I knew I was determined to get the use of my hand back. The first day, was pretty tough. I was supposed to do the exercises every hour. I managed to slowly (despite excruciating pain) to exercise about 1/3 or what the therapist directed. The tendons in the hand appeared to have shrunk. My hand could only close half way after about a week of working it pretty hard. I was supposed to wear the splint at all times that I was not exercising the hand. Every night after the splint would be removed to start exercising, it seemed all the progress I had done the day before was gone! This was frustrating. I was convinced it was the splint causing the problem. My hand was simply TOO immobile. I stopped using the splint as I suspected it was doing more harm than good.

I continued to exercise the hand until meeting the therapist the following week. I complained to her that my hand was sweating and it felt like the tendons had shrunk. She affirmed that that I was doing well. It was about seven weeks now since the surgery. I was amazed that despite the monumental effort that I had made to exercise the hand that there was still a lot of "stiffness" and a great deal of pain. I used a heating pad at night.

A MEETING WITH THE SURGEON

A minute after the surgeon saw me, he had this concerned look on his face, mumbled a few words, asked a few questions, then got up and left the room. I still had questions, but he was gone...

A few minutes later, his assistant came in and informed me, that they believe that I have RSD. RSD? What's that? "We need to get some tests done right away." It is important that I get in right away, she repeated. The surgeon had to pull some strings to get these appointments made. Lucky me (good to have such an important man involved)... The first appointment was to get a ganglion block. I didn't know this. I called to confirm the appointment and was asked by the nurse if I knew why I was coming in. I replied that no one had discussed anything with me. I was told not to eat anything for six hours prior to the appointment and everything would be explained when I arrived at the doctor's office.

I FIND OUT ABOUT RSD

I did as told, arrived at the doctor's office and was informed exactly what was involved. The doctor looked at my hand, told me that he had been treating RSD for 30 years and asked a few questions. When did your hand start sweating? Has the swelling changed much since the surgery? He also commented that there appeared to be more hair on that hand. He asked me if I've noticed that I have to cut my nails more often. YES! That's it exactly! I've been having to cut my nails every other day on that hand! It was getting more and more hairy! It hurts like hell, its discolored (RED) and SWOLLEN! WHAT IS THIS, I asked?!

He replied that it was a disorder of the Autonomic Nervous System. Autonomic what? This was a system of nerves which is responsible for things like respiration, temperature control, sweating, numbness, hair growth, etc. Things that run on their own - autonomic.

O.K. so why is mine having these problems? Well, the short answer is "PAIN". When injured, the body attempts to immobilize an injured region through inflammation and pain - he said. But now the body was confused. It didn't realize that the hand was better and was forcing inflammation and pain to keep the hand immobile... O.K.??... what do we do about that? We have to block the pain totally... He replied. How do we do that? We do what is called a ganglion block which we can begin today. He went on to describe the procedure... A needle is inserted with anesthesia and other ingredient (a special brew) through the side of my neck approximately one inch into towards the ganglia near the spine.

I BEG your pardon? Will this heal me? It might, he replied. MIGHT?! How often does this work? It works all the time. You mean to tell me that this procedure ALWAYS works? Well, not right away, but it does work, he stated. Does it always work, I asked. Well... no, of course not. What if it doesn't work? We repeat the procedure, he replied. How many patients are cured after the first treatment, I asked? "I am not sure that any have been cured after the first treatment... " How long do these patients come in. "I have patients that have been coming in for years... Many have improved dramatically, some may have even recovered completely."

Doc... no disrespect intended, but how do you know that these patients didn't get better on their own, inspite of the treatment as opposed to because of it, I asked? No offense at all, we don't understand this disease, however we also have other treatments, he added. What are those, doc? (the thought of a needle inserted into my neck being somewhat distasteful to me) We we can apply a tourniquet to your arm (under general anesthesia) and then drain the blood out and give you a series of pain killers into the arm (translation - more special brew...). Sounds painful... Any possibility this gets better on its own? I asked? Anything is possible, he replied. Any other treatments? Physical therapy can be helpful, he replied. You mean I see someone who tells me to move my hand and pull on a rubber band? Pretty much, he replied. ...

THANKS, BUT NO, THANKS

Thanks, but no thanks, doc... A few weeks later, I received his bill. $400.00 for his 15 minute consultation. That is $1600.00 per hour! As an engineer, I was definitely in the wrong business!

Just one more appointment...

The surgeon has scheduled two appointments for me. One for the "Ganglion block" and the other for ...? I decided that I would call to see what THIS appointment was for. I called the number that I was provided and was told that I was scheduled for a "Nerve Conduction Study". I asked, what is a nerve conduction study and why do I need one? I was informed that it would determine if I had nerve damage. How does this work? Well a voltage is applied to different locations on your arm the amount of current that travels is measured. This is done at this surface, I asked? No, needles are used, she said. Is it painful? "It is moderately uncomfortable." I remember hearing this term before. Translated, it means that it HURTS - A LOT! Especially when applied to a swollen hand that hates to move at all.

So I asked the obvious. What happens if we discover that I have nerve damage?, I asked. You'll have to talk to your surgeon about that. I politely cancelled the "nerve conduction" study.

THEY DON'T GIVE UP!

A couple of hours later, I get a call from a very upset doctor who asks me WHY I cancelled the appointment?! I reply that it is because I don't know the reason for it. He states that it is a nerve conduction study. I said, I know that, I just don't know why and how it would be useful He states that it is to determine if I have nerve damage. I asked him, if we find that I have nerve damage, what can be done about it? He told me that I have to talk to my doctor. I stated, that try as I may, I am unable to get him to return my calls. Perhaps he would be so kind as to tell my what we do with the painfully obtained information. ARE YOU COMING IN? he demanded. No. Do you realize how difficult it is to get rescheduled? No, I reply. It is likely you will not be able to get in for another 6 weeks, he threatened! Then I strongly urge you to contact a more desperate soul trying to get in to see you, because I WILL NOT BE COMING IN. Thank you for your concern, however.

MY OWN RESEARCH

So now to the bad news... I look up RSD on the net and the horror begins. This is pretty bad. Many of the people that get it, have their lives turned upside down! Supposedly, it can even move... spreading and becoming "whole body RSD." In some cases, the condition even begins with injuries as minor as bee sting... I get a bit depressed for a few days as I continue to read the horror stories. Eventually, I join a support group for RSD sufferers. Many of the participants have been long time sufferers. Some have morphine implants, many are in wheelchairs. Still even more are on disability or trying to get on. Still others have lost their spouses, family, jobs, life... Pretty depressing stuff. I begin to ask questions of my fellow sufferers. Have you had the blocks? Yes. Have they worked, NO, but they have worked for others. Are any of those people available for comment? No. Well then why do you get the blocks, I asked? They sometimes help for a while... How long? Sometimes a week, sometimes a day, sometimes an hour, sometimes, not at all. Just depends on if they hit the right spot and if there is too much damage to the Ganglia...

Does this make sense? I begin to question the people on this "support" group. Eventually, I realize that the overwhelming majority have lost all hope and are consigned to suffer with this condition. I begin to do more research on the net when one day, I run across a researcher in Holland. He does not believe that the theory of the involvement of the autonomic nervous system is accurate. He instead believes it to be a problem related to initial inflammation which then causes immobility, followed by tissue damage and necrosis. Being an engineer, this sounds far more plausible to me. If it wasn't for the hair growth, I would be convinced. However, I decide to follow the treatment outlined. Unfortunately, there are no dosages. The treatment in Holland for this condition, which they do not label RSD (they call it CRPS - complex regional pain syndrome - now becoming a more popular term) involved DMSO and NAC. I run down to the local vitamin cottage and buy both. I apply the DMSO (which is used as an industrial solvent) and take 600 mg of NAC three times a day. I also join, the local health club. In addition, I start taking glucosamine/condroitin, a multivitamin, coral calcium and take a daily dosage of neproxin for inflammation and magnesium citrate.

GETTING BETTER!

There is no doubt, I am getting better. I ordered a "Dyna-bee". This is a gyroscopic hand exerciser. I also run down to Wal-mart and purchase a hand exerciser. Initially, I can't compress it, not even on the lowest setting. The pain is SEVERE. At one time, I actually vomit from the pain. Nevertheless, I continue. Slowly, my hand is starting to get strength. Within two weeks, I am making a fist. The hand now has about 40% of the strength of the health hand (based on weight lifting and endurance measurements). I continue and report back to the support group! I am getting better guys! Maybe some of you people want to try what I'm doing. To my surprise, I get a LOT of resistance!

THEY DON'T LIKE ME!

Not only was there resistance, to the idea that I am getting better, but some believe that I was not real! That I am someone who is trying to harm them - Keep them from getting their blocks, their morphine pumps! Hey people! I am just trying to tell you that I am getting better! I have greater mobility. I am starting to be able to do things. It's only been a couple of weeks and I have no doubts. A few sound hopeful that I may in fact be real, but the attacks come in daily! Personal insults, abusive language, etc. The moderator eventually steps in to resolve some of the issues. No matter however... Eventually, I am BANNED!... I was simply "too upsetting" and this was a "support" group. Apparently only emotional support is useful - not support that leads to getting healthy. Not once did I attack anyone... All I ever did was to tell people of my regiment and record my results. This, while others did the same thing but under the care of a physician - so long as the treatment was not effective and they could complain.

I was getting better, most of them, if not all, were getting worse. One ganglia block after another. One horrible pain killer after another. Implants, medication, TENS, biofeedback... People who could no longer see their limbs because they were so swollen... Or so zoned out, they were hardly alive...

I was getting better, but instead of providing hope, I was upsetting them... How can this be? Was my message one of doom and despair? Are we so sold on "prescription medication" that we can accept nothing else? Does common sense not exist anymore? Why do we persist in pursuing the failed medicine in this country?

LIFE IS SHORT

I will end with this... Life is short, be careful who you entrust yours with. Modern medicine is not always a science. It is often an art. Unfortunately it is often "Modern Art". Be careful not to let them them turn your limbs into a Picasso...

There is little to support that the autonomic nervous system is the cause of RSD/CRPS. Most evidence is anecdotal. I don't find it convincing. I am getting better anyway... Had I allowed myself to be bullied and I DO MEAN BULLIED into the blocks and prescriptions, I might have still improved albeit over a much longer period as my body not only had to heal the hand but also the invasive procedures that they would have subjected me to (so long as I exercised). I guess they would have taken credit for what my body had done despite their "assistance." Maybe I can have them send me a few leeches.

My belief is this, if I give my body what it needs, it will have the best chance of healing itself.

I have written this page because I know that others out there are desperate for good news. I happen to have some. I expect to be fully recovered soon. AND NO, it is not remission that you go into when things get better. It is the end of a painful condition and healing... You are going to hear a lot about how this disease is never cured and simply goes into remission but can then come back.

This condition has a cause. If you subject yourself to that same cause it will likely happen again. That's how it happened the first time, before you had the disease/condition.

Things I suspect may have possibly played a role in causing my RSD to occur

1. I drank a lot of diet coke. I later found out that aspartame begins to degrade into formaldehyde at 86F. I no longer drink diet pop.

2. Maybe it was related to the local anesthetic used on me. Having Malignant Hyperthermia (an allergy to some general Anastasias (containing calcium) that causes a temperature rise that can kill during surgery). I may have had a similar but more localized reaction to the local anesthesia...

3. Immobility. When a limb is immobile, blood flow is severely restricted. This can eventually cause tissue damage. This is probably the most likely culprit. Perhaps I took, "Don't move your hand" far too seriously...

I am happy to hear from you and speak to you if you wish so long as I have the time to respond.

HOW I TREATED MY HAND

First, many thanks to doctor L. Van Der Laan, the Dutch researcher who has led me towards a lasting recovery. For more information, please visit:

http://people.becon.org/~rsdinfo/english/therapy/drvanderlaan.html

The phone number on that site is incorrect. It took me a long time, but I was able to locate Dr. Van Der Laan in Holland. If you need the number contact me and I will get it to you. I did eventually speak to him, but if you are expect that a conversation with him will heal you, forget it. He wished me luck with the DMSO and gave me a ratio to mix with a "fatty substance" that he could not recall. Still there is no doubt in my mind whatsoever that DMSO IS EFFECTIVE and DRAMATICALLY SO!

So... My treatment and how I improved things.

First, DMSO (used 99.9 %) initially. Purchased it at a "Vitamin Cottage". Had a miserable time with severe irritation and was only able to use it about twice a day. Skin was constantly flaking. But I got a LOT BETTER! I now use it mixed 50-50 with Vegetable Glycerin. Skin tolerates it much better. Use it five times per day on clean tissue.

NAC (Purchased at GNC/Vitamin cottage). It is not nearly as effective, but you want to attack this condition from every angle. 1500 mg twice a day.

Glucosamine/Condrotin. 500 mg twice per day.

Magnesium Citrate. This has been shown to cause vascular dilation. Two large capsules twice per day.

Vitamin C. This has been shown to aid in vascular dilation. One large capsule twice per day.

Epsom Salt glove. Three times per week, I pack my WET hand in EPSOM Salts and cover with a Latex glove and go about my business for between 30 minutes to an hour. When my hand used to swell up, I wanted to reduce it fast, this worked for me and I don't have to sit in a tub or soak my arm in a tray. I'm an active person and I don't have that kind of time. Besides the concentration of Epsom Salts by direct packing is much higher than in a tub.

!!!EXERCISE EXERCISE EXERCISE!!!!

Is it going to hurt? YES! Things will get better with time, be persistent.

STEP 1 - Moving.

I moved my hand. I would try to close it as far as it would go (which was only a few degrees) and hold it there. Within a week, I was almost making a fist. Within two weeks, I was making a fist. Did it hurt? YES! I DID IT ANYWAY.

I stretched the wrist in both directions. I also pushed the two hands against each other (as if praying). This is a form of isometrics. It is very effective for strengthening the wrist.

STEP 2 - Chinese Steel Chime balls.

I got two of those Chinese steel chime balls. Put them into the hand and rotate them as fast as you can. I did this for 30 minutes at a time several times a day.

STEP 3 - Dynabee.

Ordered a Dynabee. This is a gyroscopic hand exerciser. Great for the fingers, wrist and forearms. A great hand exerciser!

STEP 4 - Hand Exerciser.

When I started to get good movement in my hand again, I added a hand exerciser. I got this from Wal-Mart for $12.00. It became a constant companion. At first, I had the exerciser set on the lowest level, but soon I was able to increase to the next level. Within a month, I was on the maximum level. Within two months, I exceeded the strength in my good hand. Is the RSD gone. Not yet. The hand is still stiff in the mornings (that quickly goes away after a bit of activity). I have no limitations on what I can do. There is also very little pain when it is present at all (Usually only if I get hot).

STEP 5 - LAT PULLS/pull ups

These pull on my wrist. I believe this allows toxins to escape and nutrients to enter the joints. Initially, I just held the bar and let some of my weight dangle on it. Within a month or so, I was doing complete pull-ups and 120 pound lat pulls.

STEP 6 - Bench Press / Push ups.

I started out just leaning the hands against a wall and pushing away. I increased the angle as I was able to. Eventually (in about two weeks) I went to the ground and began doing regular push up. I am currently doing 20 pushups per set (3 sets) ON MY FINGERS.

THINGS I AVOIDED

HEAT

FOR ME, using heat was a disaster. The hand swelled further. Heat was simply not effective for me. I have the RED variety of the RSD. I don't know if this holds true if you have the BLUE variety. Using a heating pad was terrible for my hand, but it feels good. When I stopped using it, I did much better.

ICE

WITHOUT ANY DOUBT, if I apply ice to my hand, I will set it back a week! Initially feels good, a few minutes later, I'm in pain. Swelling comes on with a vengeance

BEST TEMPERATURE? COOL. I learned that if I didn't wear a lot of clothing, I did better. Soon, I was not wearing a coat. Can't really explain the reason why. There are too many possibilities, but I've confirmed this to be true and repeatable on my own body.

I drive a convertible and drive with the top down all the time (even in light snow).

Caffeine

This one is a tough call. I stopped using it because others with RSD said it helped. Now that I have quit, I feel so much better! I sleep better and have more energy.

WHERE AM I NOW?

As of March 06, 2004 (my operation was October 15 2003):

My RSD/CRPS hand is at about 80% of normal strength. I can wrist curl about 50 pounds with that hand (3 sets of 10). The hand is strong, but doesn't quite have the endurance of the left hand. In a wrist exerciser test, I was able to compress the hand exerciser (set to maximum level) 80 times with my healthy hand and about 50 times with the RSD hand. Still, pretty good considering it has only been a couple of months since I started really working it. There is nothing that I avoid doing...

Yes, there are days that are a bit more painful than others, but many days involve NO PAIN. NO PAIN, NO DRUGS, NO BLOCKS, NO NONSENSE.

March 24.

I spoke to Dr. Van Der Laan (in the Netherlands). He was the Dutch researcher that conducted the study on RSD.

It took a while to get to him but he was pleasant enough although didn't speak to me for very long. I told him where I was. He informed me that DMSO was effective. I already knew that, but its killing my skin and is very irritating I commented. Mix it with a fatty substance, he said. Which one? "Don't remember. You can find my work on line." Off I went. I searched and found no references to what to add to DMSO in order to make it palatable to the skin. I tried mixing it with several hand creams (no luck - it separates). I finally tried Vegetable Glycerin. That seemed to work. The solution remained homogenous. I have been using it five times a day since I tried this mixture.

March 29

For the first time, the strength and endurance of the RSD hand has exceeded the strength of my "good" hand. I am doing seventy five pound wrist curls (50 times). The RSD hand was able to compress the hand exerciser (maximum setting) 95 times. The healthy hand could only do it eighty times. Strength and endurance targets have now been reached. Still remaining..., this miserable numbness. However, since I've been using the DMSO, the hand is MOSTLY not numb. During most of the day at my computer or when doing less exerting activities, I have most of the feeling in my hand. The numbness and swelling are definitely the same thing. I believe that the swelling decreases blood flow and the nerves in my fingers and hands are simply too damage to tolerate any reduced blood flow for very long without going numb.

Whenever my body gets hot, my index and middle fingers start to get numb. I notice some minor swelling. This is now a short term condition. The swelling can dissipate as quickly as it came on. I am now convinced this is in response to temperature. The autonomic system IS involved but I don't believe that it is the cause. However, I am easily able to cause swelling ON DEMAND. I can do this without ever touching the RSD hand. If I am in a warm room (75 - 80 F) My hand will begin to go numb and swell slightly. I isolated the body and the RSD hand while in a car. On a colder day (60 F), I turned the heat way up in my car. I had my brother drive me and held my RSD hand outside. My body was hot, my hand was cool. A couple of minutes later, my hand began to tingle and swell. No doubt about it. I believe this is due to vascular contraction and autonomic response to temperature. So does this mean the Autonomic response system is the problem? I don't believe so. The autonomic system is responding to stimulus from damaged nerves and inflamed tissues. Cure the nerves and tissues - resolve the condition.

There is no doubt that the DMSO is healing my hand. When I stop using it, symptoms begin to come back and worsen over time. Since I have been using the mixture 50-50 DMSO and Glycerin, my skin seems to tolerate it much better. It is still mildly irritating, but nothing like it was as pure DMSO. I am using it at least five times a day now and determined to do so until I am healed.

April 1

I've been noticing that the hair on the hand has been decreasing for the last month and a half. At this point both hands have pretty much the same hair growth. The DMSO mixed with Glycerin does not irritate my hand. It still feels warm when I put it on, but there is no burning. I am concerned that it will no be as effective as it was in its pure form. However, my hand still feels better. Swelling and tingling seems to come on less and less during the day. At rest, I have only a small amount of numbness on the middle and index fingers.

August 1, 2011

It has been many years since I've touched this site. Over the years, many of you desperate for relief have contacted me. Recently, I have had a large number of people that have contacted me to find out how I am doing. So without further ado, I am fine. My hand is fine. A couple of years ago, I had a bit of a scare when I tore a rotator cuff during an acrobatic stunt that I shouldn't have tried, but I was careful not to be too immobile after the surgery and everything was fine. It has been seven years since I've had RSD. I credit my recovery to two things: DMSO (mixed 50-50 with vegetable glycerin) and exercise. This is my RSD story. I hope it inspires you to focus on your health and to maintain a positive outlook. I would like to thank Dr. Van Der Laan. I am quite certain he doesn't remember me, or my call - but I believe he saved my life. One day, I hope to travel to the Netherlands to thank him personally for his research into DMSO and RSD/CRPS.

If you would like to reach me, you can do so at samm(AT)idcomm(DOT)com

Replace the (AT) and the (DOT) with @ and .