Stiff Person Syndrome: Part One

Stiff Person Syndrome
(Formerly Stiff Man Syndrome)
Part One

On December 12, 2001 I was diagnosed with “Stiff Person Syndrome.” After being diagnosed, I began searching the Internet to see what I could find out about this syndrome. Below is a summary of what I gleaned from various sources. But first, some background.

Note: All of the links scattered throughout this six-part article are listed at the end of this article. So if you find a link that looks interesting to follow, you can wait until you're finished reading this lengthy article and still have quick access to it.

Background

For several years I have been stretching for at least 15 minutes before and/ or after working out. And at the beginning of 2001 I was very flexible. For instance, I could easily stand with both legs stiff and place my palms on the floor. But on a very cold day in February I went for a walk of about an hour. Near the end of the walk I pulled a muscle on the back of my left knee.

After resting it for a couple of days, I started trying of stretch it using a modified “hurdler’s stretch.” Formerly, I could easily place my nose on my knee while doing this stretch. But the left leg was now so tight I could barely bend forward. And this tightness never has eased up. Then over the spring I began to notice that I couldn’t go as far forward when stretching my right hamstring as well. And then I noticed the same problem with all of my stretches. I simply was becoming less flexible than I was. So I began experimenting with different kinds of stretching and even increasing the amount of stretching I was doing. After getting a book on stretching from the library (The Wharton’s Stretch Book). I incorporated its ideas about stretching into my routine and was stretching as much as 45 minutes a day.

But it seemed no matter what I did, I was getting less flexible. And worse, starting in June, I began pulling muscles. At first theses occurred while working out at a gym. But then I began pulling muscles doing normal things like walking (not “power walking” for exercise as in February but regular walking, like from one store to another in a shopping plaza). I have also pulled muscles reaching for things and changing the blankets on my bed. It has gotten to the point where I am afraid to move for fear of hurting myself.

Along the way, I was diagnosed with fibromyalgia. I won’t discuss the reason for this in detail here as I do so on my fibromyalgia pages. But in short, at the time of the diagnosis I had generalized torso pain along with fatigue and the pain from these multiple pulled muscles. I eventually got the generalized pain under control, but the fatigue and stiff and pulled muscles continued to get worse. Moreover, my pulled muscles are either not seeming to heal at all or taking much longer to heal than would be normal. And the slightest movement can re-aggravate previous injuries.

Then on October 29, I pulled my right quad muscle while doing squats at the gym. Less than a week later, I pulled a groin muscle on the same leg while stretching. These pulls were so severe I had to stop doing any lower body work at the gym. It was at this point that the stiff muscles grew so bad that in the mornings I could barely move. Just getting out of bed became a major struggle. And the only way I can walk in the mornings is by basically shuffling my feet a few inches at a time. It now takes me at least five minutes just to walk the 20 feet or so from my bedroom to the kitchen to eat breakfast. It takes several hours and a hot bath before I can walk at all normally.

Then on November 20 I pulled my right bicep muscle while doing very light set of cable pulls at the gym. I was going light as I was still nursing a pulled lat muscles on the same side. It was after this injury that I knew that trying to work out any more would be futile. I did a search of back posts in the alt.med.fibromyalgia newsgroup on “tight muscles” via Google Groups. And there was much discussion of problems with tight muscles by fibromyalgia sufferers, but no one seemed to be reporting anything as severe as I was experiencing.

My family doctor is the one who had diagnosed me with fibromyalgia. So I went to him again to see if he knew what was happening. He did say he didn’t think my problem was due to the fibromyalgia, but her didn’t have a clue as to what was causing it. He had previously run blood tests on everything he could think of, such as calcium, magnesium, and potassium levels, but everything was coming up normal. The only thing that was high at one time was my “CPK Total” which I gather has to do with muscle enzymes. But this was a test that was done when I had just started to work out again after taking a break after being diagnosed with fibromyalgia. And he figured the elevated levels were due to this. But to be sure, he re-test my CPK levels, and this time they were normal.

So he had no idea what to recommend. I suggested I try physical therapy, and he agreed. So is started physical therapy on November 29, 2001. They gave me some stretching exercises to do (which were similar to what I had already been doing) and began having me do stretching and very light strengthening exercises in a heated (bathwater temperature) pool. Although it felt good being in the hot water, I was getting nowhere in terms of increasing my flexibility. And even the simple exercises they had me doing were leaving me very sore the next mornings. And even on days when I don’t have therapy I’m now waking up feeling very sore. In addition, my therapist said she had worked with fibromyalgia suffers before. And they did have tight muscles, but not like I had. So it was suggested that I go to a neurologist to see if there might be a neurological connection.

I have been going to a neurologist for some time for a neurological condition I have. I get what are called “tics.” These are small muscle movements that can flare up at any time. They’re not painful but very irritating. They will prevent sleep if they start up at night. I was taking three different prescription drugs at one time for them. But I was able to get off of the drugs through a careful attention to diet and the use of calcium and magnesium supplements. In any case, with this new problem, I made an appointment with my neurologist on December 12, and my therapist sent a FAX to him explaining what I had been doing in therapy.

I described my symptoms to him, and he diagnosed me with “Stiff Man Syndrome.” He said the symptoms were as the name sounded, very stiff muscles like I had been experiencing. But he appeared to know very little else about it. He said he knew he needed to do a blood test for something, but he couldn’t remember what it was. He said he had to do some research and to call him back in a week. So when I got home, I typed in “stiff man syndrome” in a search engine to see what I could find out about it myself. Below is a summary of that research as best as I understand it.

Name, Frequency, and Age of Onset

The traditional name of the condition is “stiff man syndrome.” But for “political correct” reasons, it was officially changed to “stiff person syndrome.” Even though the majority of people with the condition are men, I guess this makes sense. For those rare women with the condition, I guess being told they have stiff man syndrome would be a little weird. So I will use “stiff person syndrome” in this article, abbreviated as SPS. The condition also goes by the name of "Moersch-Woltmann Syndrome" after, I assume, the researchers who first described the disorder.

SPS is very rare. One site said it only afflicts one in a million people. If this figure is accurate, then there are all of 350 people in the entire United States with the condition. However, it seems to me this number might be a little low. I found a couple of “forums” on the Web with posts by people either with the condition or who knew people with it. And with the number of people posting in theses forums, it seems hard to believe that only 350 people in the USA have it. But then, some of the posters were from other countries as well.

But whatever the exact number, it is rare. And this explains why my neurologist didn’t know much about it off-hand. It’s possible that I was the first person he had ever seen with the disorder. In fact, I was probably “lucky” that he even knew enough about it to make the diagnosis. A poster in one of the forums said he had been to 21 doctors before being diagnosed.

As indicated, SPS generally afflicts men, and usually starting during the third to sixth decades of life. One site said the average age of onset is 41. I’m currently 40.

Cause and Description

The cause of SPS is unknown. But it is believed to be an autoimmune disorder. Specifically, it is thought that the immune system is attacking glutamic acid. Glutamic acid is an amino acid, one of the building blocks of protein. This amino acid is often added in “extra” amounts to protein powders for weightlifters as it is supposed to aid in recovery. But whether it is effective in that respect or not, what is important is that it is a component of muscle protein.

The blood component my neurologist was trying to remember that he needed to test for is “anti-GAD (glutamic acid decarboxylase) antibodies.” If this antibody is present then one definitely has SPS. However, for 40% of people with SPS this antibody does not show up in a blood test.

It is believed this problem causes the motor units to be perpetually firing, especially in opposing muscles, such as the biceps and triceps. And the opposing muscles both trying to contract at the same time is what causes the stiffness. And this situation explains my other symptoms as well. If the motor units are continually firing, then the muscles never get a chance to rest. And since rest is on of the most important factors in recovery from injuries, then this explains why my pulled muscles are taking so long to heal. In addition, this firing of motor units is particularly pronounced at night. So this explains why I’m waking up feeling so stiff and sore. My muscles are in essence working all night long. Moreover, this could also explain my increasing severe fatigue. Even when I’m resting, my muscles are not.

Another possible symptom is muscles spasms. These spasms can cause the limbs to “jerk” uncontrollably. As indicated above, previously I would get minor muscle movements called tics. In addition, I was diagnosed with restless leg syndrome back in March. But not just my legs, but any part of my body would sometimes “jerk” when I’m trying to fall asleep. I have mostly gotten this problem under control. But it is still a problem on occasion. And it is possible that these tics and jerking were really early symptoms of the SPS than separate disorders. But whatever the case, my symptoms in this regard are not as severe as others report. For some with SPS, the spasms are more like full body seizures.

But what is discouraging is that SPS is a progressive disorder. The muscles get progressively stiffer. Many with SPS eventually need canes or walkers to get around, and some even end up wheelchair bound or bed-ridden. And this is my greatest fear at this point. As stiff as I am in the mornings, I can see how very easily things could get so bad that I won’t be able to get out of bed, let alone be able to walk unaided.

And finally, there is a form of SPS that is fatal, called “stiff person syndrome plus.” It generally kills within two years. But from what I gather, it is even rarer than “regular” SPS.

This article is continued at Stiff Person Syndrome: Part Two.

Disclaimer: The material presented in this article is intended for educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, exercise, or health improvement program, one should consult your doctor. The author is in no way responsible or liable for any bodily harm, physical, mental, or emotional, that results from following any of the advice in this article.

The above article was posted on this Web site December 16, 2001.
It was updated February 2, 2015.

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