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Stiff Person Syndrome Setback

by Gary F. Zeolla

This article is a follow-up to the six-part article Stiff Person Syndrome.

This article was posted Saturday, August 22, 2009.

This past week I was almost completely paralyzed from Tuesday night to Thursday afternoon. During the night on Tuesday/ Wednesday morning I felt like I had boa constrictors wrapped around my legs and was in significant pain. I also had a shorter similar flare-up of a few hours last Friday. Today, I am mostly back to “normal, ” except for still being very stiff in the mornings.

For background, back in 2001, shortly after I was diagnosed with fibromyalgia in August, I gradually became stiffer on a daily basis. Eventually, I became extremely stiff 24/7, barely able to get around. Mornings’ were especially difficult. I had to take a long hot bath first thing every morning to loosen up enough to function at all.

It was at that point I was diagnosed by a neurologist with Stiff Person Syndrome (SPS), a very rare auto-immune disorder. I then began having episodes of being virtually or even completely paralyzed from head to toe for hours to days at a time. Sometimes these episodes would be accompanied by waves of pain going through my body and the feeling of being squeezed. The worst was in September of 2002, when I was paralyzed and in pain for ten days (see Suffering and Spiritual Struggles for details on that episode). These flare-ups were almost always brought on my some kind of allergen exposure.

The neurologist wanted to prescribe various medications, but I decided to go the alternative treatment route. Among other things, I underwent a long and very expensive series of NAET treatments, an alternative type of allergy treatment. During the treatments, I had many episodes of being completely paralyzed. But eventually the daily stiffness mostly cleared up. I would only be stiff in the mornings, but it would pass after a couple of hours without the need for a bath, while the episodes of being completely paralyzed became less and less frequent.

When I started lifting weights again in the summer of 2002, I thought I was on the road to full recovery. That is why I decided to compete in powerlifting again starting in 2003. For my first few contests I still had the morning stiffness, but I would take a long hot shower before the contest to loosen up, and that seemed to work. But over time, even that did not seem necessary anymore, even though I have continued to be somewhat stiff in the mornings. The last flare-up of being paralyzed occurred in the fall of 2005, so I figured I was completely over that particular problem.

However, throughout this time, I have continued to have to deal with the pain and especially the fatigue from the fibromyalgia, while my allergies worsened to the point of best being described as Multiple Chemical Sensitivities (MCS). These difficulties have caused me many problems that I won’t go into here, but I will say they have been getting worse.

My most recent setback of the SPS probably began several weeks ago, at the start of June, two weeks before my most recent powerlifting contest. During both of those weeks leading up to the contest, I had a serious allergic reaction to something and that led to a significant loss of sleep. I noticed I was not feeling as flexible as normal when I did my stretching after my workouts, but I attributed that to the loss of sleep.

The loss of sleep and stiffness is probably why my last two heavy workouts before the contest did not go well, and why the contest did not go well either. I felt “off” and stiff while I was warming up and had problem hitting depth on squats and did not do well in general. Since then, I pulled my left hamstring and adductor and my right pec. These injuries were probably due to the evolving stiffness.

Then last Thursday I had a significant allergic reaction. That night I barely slept. When I finally fell asleep then awoke, I was virtually paralyzed. In the morning I called my doctor (PCP) to let him know what was happening, but he was not in the office that day. The receptionist suggested I call 911 and go to the hospital, but I decided to just wait it out. After a few hours, the stiffness cleared up, and I was okay over the weekend.

But then this past Tuesday evening, I once again had a significant allergic reaction. This time, I was able to fall asleep, but a few hours later I woke up almost completely paralyzed. By morning, I had gotten worse and could barely move. I again called my doctor and made an appointment. With much help from my dad, I was able to make it to his office. He gave me a prescription and sent me to the hospital for some blood work.

The drug he prescribed for me was prednisone. I was familiar with this drug as it had been recommended before. But I had been shying away from it due to the many possible and serious side effects. But my doctor only prescribed it to be taken for a week. I’m not sure what taking it for just that long is supposed to do. I guess it is to try to calm down this most recent flare-up.

The stiffness mostly cleared up a few hours after taking the drug, but that probably would have happened anyway based on my previous experience with these flare-ups. But I’m guessing more drugs might be forthcoming. But the problem is I have barley slept since starting the drug. That is what happens almost every time I try a drug or even a supplement due to my MCS. I am unable to sleep and have to stop taking it. But I will try to take the prednisone for the full week to see what happens.

As far as training goes, I haven’t lifted since Monday, and that workout went terrible, probably because the developing stiffness worsened my pec injury. I considered not lifting for a while and instead just going for short walks and then stretching. But the problem with that idea is it is the height of the ragweed/ mold season here in western PA. As a result, for many years now I have had a severe problem spending time outdoors from August until the first killing frost.

Yesterday, I tried laying out in the sun for 30 minutes, figuring the sun and heat would help to loosen up my tight muscles. That did happen, and afterward I felt the least stiff I've been in quite a while. But then last night I could not sleep due to noises in my head (cracking, snapping, and popping sounds). I've never gotten an explanation from any doctor as to why this happens, but it is a recurring problem for almost 20 years now. It especially flares up when I am exposed to allergens during the day and most especially anytime I try to spend time outdoors in the late summer and fall.

As such, any outdoors exercise is out, including walking. So that only leaves lifting weights in my home gym if I want to try to stay in shape. I am hoping to work out tomorrow . But when I do, between this flare-up and my recent injuries, I won’t be lifting very hard, and probably won’t be for quite some time.

I’m also planning on taking a more “bodybuilding” rather than powerlifting approach. By that I mean doing higher reps than I normally do, even on the powerlifts, and doing more isolation exercises than I normally do in order to focus on my various problem areas. I’ll probably stick with this approach for some time before trying to gradually drop to lower reps and heavier weights and working harder. I will continue with the six-week rehab program I already started for my recent injuries (see Rehab Workouts - Weeks 1-6 of 6).

Of course, this all assumes these recent SPS flare-ups are isolated incidents and not the beginning of such flare-ups again coming on a regular basis. It that happens then I doubt I’ll be doing much lifting or anything else for that matter for quite some time.

Whatever happens in that regard, I am sure I won’t be competing again this year, maybe never again. It all depends on how things progress over the next few months. Due to the ongoing morning stiffness, I never work out in the mornings, but contests for me as a lightweight always start in the mornings. As such, they would be difficult. But if I do compete again, I will probably have to get back in the habit of taking a hot shower before the contest.

Needless to say, to have a problem I thought I had beaten to come roaring back is very frustrating and discouraging, and I am having a hard time dealing with this problem coming back on top of all of my other problems. If I wasn't a Christian with the LORD to lean on, I doubt I'd be able to handle it at all. All I can do is trust Him to enable me deal with it all and to guide me as to how best to do so.

For a follow-up to this article, see Stiff Person Syndrome Update.


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.

Stiff Person Syndrome Setback. Copyright 2009 by Gary F. Zeolla.

The above article was posted on this Web site August 22, 2009.

Dealing with Health Difficulties
Stiff Person Syndrome: Dealing with Health Difficulties

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