Saturday, February 21, 2004
Tardive dyskinesia, revisited....
Those awful muscle twitches and cramps I had for about a week turned out to be more, much more. When I got out of bed yesterday, I suddenly had them EVERYWHERE! Legs, feet, back, arms, face, hands. And the tremor in my right hand got way worse than usual. I knew then that something was very wrong, that something besides illness had to be the culprit. I suspected a reaction to a medication. The newest one was the one for gastroparesis. I double-checked the patient info and only saw muscle cramps listed as a very rare side effect, but I have a history of this sort of reaction to anti-depressants, so I immediately thought tardive dyskinsesia, which are Parkinsonian-like reactions to medications that signal brain damage.
My good friend and evil twin (ha ha) Ducky came to the rescue with information linking the medication in question directly to tardive dyskinesia. I called the gastroenterologist's office and left a detailed message. By the time the physician's assistant called me back an hour later, the tremor had spread to my entire body, just like it did with in the past with four other medications I've reacted to. I was flopping around like a crazed marionette. He suggested Benadryl to try to counteract the gastroparesis medication, but Benadryl makes me hyper, which didn't seem like a good idea. So we both agreed I should just stop the medication altogether....thank goodness it can safely be discontinued suddenly. He added that if I experienced any swelling or shortness of breath, I should call an ambulance.
I went to work last night, although how I got through the shift, I have no idea. I was way beyond weary with all the twitching and shaking. My joints, especially the knees, felt as though a white-hot knife was slicing through them. This was worse than before I began taking anti-inflammatories last year. I could hardly even walk.
Had a heck of a time getting any sleep last night. The pain was so intense that I just lay in bed and cried. I finally realized that if I didn't take something, I'd end up in the hospital (yes, it was that bad). So I took a double dose of my emergency pain medication. It knocked everything back down to a livable level, and I got four hours of sleep before the twitches started keeping me awake again. I dozed off here and there before getting up this morning to get ready for a fibromyalgia support group meeting.
Today, I'm still twitching and shaking, but it's slightly less intense except for my stomach. My stomach is back to its old tricks of reflux and nausea in addition to twitching like mad, but fortunately not that intense abdominal pain I'd been so accustomed to. I think that pain was from gluten intolerance. My joints are very bad and the fatigue is pretty substantial. I know the twitches have made my fibromyalgia pain level run wild...it's impossible to tell at this point what will calm down and what won't.
I hope to God I didn't do permanent damage in addition to what I already have (each of the last reactions left permanent residual effects). I know from previous experience that I can do nothing about this except wait it out. I feel like an idiot for not recognizing this sooner, but everything I read said only listed muscle cramps, not tardive dyskinesia, and under very rare side effects at that. I have taken other medications with the potential for muscle cramps, and they have not bothered me at all. I guess the upside of this is that I figured it out within a week of experiencing symptoms. If I'd not been through it before, I'd be waiting three months for a neurologist appointment to get tested for MS and various other ailments I don't have.
So this leaves me with managing my digestion through diet alone. I'm not crazy about that, but it IS a much safer alternative, just like I rarely take pain medication and never take anti-depressants for the fibromyalgia.
This past week, I've used Icy Hot, Mineral Ice, epsom salt baths and emu oil (not all at once, of course). Usually one or a combo of these will relax the muscles if I'm dealing with simple overuse or immobility. This time, none of them really had any effect. That's what helped me finally figure out that something besides illness had to be the cause. I've been dying to get back to the hot springs, but that stupid incision in my heel is STILL open, so I'm still waiting! The green stuff I'm putting on it (Panafil) has kept infection away but has made the wound only slightly smaller. I HAVE to get off this freaking prednisone! I'm down to 6mg per day...the goal is 5mg or less. I would dearly love to go off of it completely.
Poor Dan got more bad news today....a friend of his family was found dead in the bathtub. The friend was only 37 years old...I'm guessing there's going to be an autopsy. Dan is getting together with one our former co-workers tonight so he doesn't have to sit at home and think about it. Bad news does seem to come in bunches sometimes.
The support group meeting was entertaining....a very colorful speaker who used to work with the CDC (the US Center for Disease Control). He's convinced chronic fatigue and fibromyalgia are autoimmune disorders, that the genetic predisposition exists in certain people but has to be triggered by infection or trauma for the illness to occur. He is adamant that these are disabling ailments....he said that many of those who still work have to give up their social lives and most other normal activities in order to function on the job. He also says the US is doing their people a horrible disservice by spending billions of dollars on Iraq and a mere pittance for medical research on fibro and CFIDS. Naturally, I liked the guy. Afterward, I got to talk with a few people, one of whom also belongs to the Sjogren's support group.
Not quite sure what I'm going to do with myself tonight....had originally planned to tidy up the command center (my computer desk) to clear a path for doing the taxes. Right now I don't have the motivation to even clean up my supper dishes. Maybe I'll just veg on the sofa....I so rarely do that.
Pain level: 9
Fatigue level: 9
My good friend and evil twin (ha ha) Ducky came to the rescue with information linking the medication in question directly to tardive dyskinesia. I called the gastroenterologist's office and left a detailed message. By the time the physician's assistant called me back an hour later, the tremor had spread to my entire body, just like it did with in the past with four other medications I've reacted to. I was flopping around like a crazed marionette. He suggested Benadryl to try to counteract the gastroparesis medication, but Benadryl makes me hyper, which didn't seem like a good idea. So we both agreed I should just stop the medication altogether....thank goodness it can safely be discontinued suddenly. He added that if I experienced any swelling or shortness of breath, I should call an ambulance.
I went to work last night, although how I got through the shift, I have no idea. I was way beyond weary with all the twitching and shaking. My joints, especially the knees, felt as though a white-hot knife was slicing through them. This was worse than before I began taking anti-inflammatories last year. I could hardly even walk.
Had a heck of a time getting any sleep last night. The pain was so intense that I just lay in bed and cried. I finally realized that if I didn't take something, I'd end up in the hospital (yes, it was that bad). So I took a double dose of my emergency pain medication. It knocked everything back down to a livable level, and I got four hours of sleep before the twitches started keeping me awake again. I dozed off here and there before getting up this morning to get ready for a fibromyalgia support group meeting.
Today, I'm still twitching and shaking, but it's slightly less intense except for my stomach. My stomach is back to its old tricks of reflux and nausea in addition to twitching like mad, but fortunately not that intense abdominal pain I'd been so accustomed to. I think that pain was from gluten intolerance. My joints are very bad and the fatigue is pretty substantial. I know the twitches have made my fibromyalgia pain level run wild...it's impossible to tell at this point what will calm down and what won't.
I hope to God I didn't do permanent damage in addition to what I already have (each of the last reactions left permanent residual effects). I know from previous experience that I can do nothing about this except wait it out. I feel like an idiot for not recognizing this sooner, but everything I read said only listed muscle cramps, not tardive dyskinesia, and under very rare side effects at that. I have taken other medications with the potential for muscle cramps, and they have not bothered me at all. I guess the upside of this is that I figured it out within a week of experiencing symptoms. If I'd not been through it before, I'd be waiting three months for a neurologist appointment to get tested for MS and various other ailments I don't have.
So this leaves me with managing my digestion through diet alone. I'm not crazy about that, but it IS a much safer alternative, just like I rarely take pain medication and never take anti-depressants for the fibromyalgia.
This past week, I've used Icy Hot, Mineral Ice, epsom salt baths and emu oil (not all at once, of course). Usually one or a combo of these will relax the muscles if I'm dealing with simple overuse or immobility. This time, none of them really had any effect. That's what helped me finally figure out that something besides illness had to be the cause. I've been dying to get back to the hot springs, but that stupid incision in my heel is STILL open, so I'm still waiting! The green stuff I'm putting on it (Panafil) has kept infection away but has made the wound only slightly smaller. I HAVE to get off this freaking prednisone! I'm down to 6mg per day...the goal is 5mg or less. I would dearly love to go off of it completely.
Poor Dan got more bad news today....a friend of his family was found dead in the bathtub. The friend was only 37 years old...I'm guessing there's going to be an autopsy. Dan is getting together with one our former co-workers tonight so he doesn't have to sit at home and think about it. Bad news does seem to come in bunches sometimes.
The support group meeting was entertaining....a very colorful speaker who used to work with the CDC (the US Center for Disease Control). He's convinced chronic fatigue and fibromyalgia are autoimmune disorders, that the genetic predisposition exists in certain people but has to be triggered by infection or trauma for the illness to occur. He is adamant that these are disabling ailments....he said that many of those who still work have to give up their social lives and most other normal activities in order to function on the job. He also says the US is doing their people a horrible disservice by spending billions of dollars on Iraq and a mere pittance for medical research on fibro and CFIDS. Naturally, I liked the guy. Afterward, I got to talk with a few people, one of whom also belongs to the Sjogren's support group.
Not quite sure what I'm going to do with myself tonight....had originally planned to tidy up the command center (my computer desk) to clear a path for doing the taxes. Right now I don't have the motivation to even clean up my supper dishes. Maybe I'll just veg on the sofa....I so rarely do that.
Pain level: 9
Fatigue level: 9
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