Last night…last night was not a good night.
I’ve been having trouble with my legs for about two weeks…first the flare starting on the 25th, then the EMG, and finally the stress-induced flare after my family emergency. I was hoping my legs were finally on the mend, even though they’ve gone downhill quickly every night this week.
Last night, however, something was different. And a quick caution before I continue: this post is going to be graphic. Read on at your own risk.
Last night my legs were bothering me at work, the muscles twitching and jumping, the legs tense and achy. I also started having what I politely call “intestinal distress:” in a word, diarrhea. It started at work, but wasn’t terrible. Diarrhea is one of the symptoms that is somehow linked to my leg issues—if my legs start acting up, it’s pretty much guaranteed my stomach will, too. Anyway, I was pretty miserable by the time I got home, and sat down for a while before getting up to make dinner.
To be fair, the dinner I chose was a mistake, and probably exacerbated my intestinal issues. I made veggie tacos with lots of hot sauce and an egg over easy in each. As my friend likes to say, “destruction.”
Usually such meals don’t really mess me up, but I should have known better, I guess, when I was already having trouble. Anyway, I began to eat my meal, dealing with legs that were quickly going downhill, agonizing if cloth wrapped around them, muscles jumping and sore, painful if they were laid on top of each other (or when my cat sat down between them). I was afraid to go lay in bed, so I fell asleep on the couch—my legs don’t tend to bother me as much on the couch.
I woke up around 1 or 2 so sick I could barely function. I was incredibly nauseous and my legs were achingly tight. I stumbled to the bathroom and alternated between dry heaves and, forgive my crassness, shitting my damn brains out. This went on for maybe half an hour, with me trying to do other stuff in between bouts on the toilet. I was so cold--I turned my heat up to 74 or 75, but even after that, and after curling up under blankets, I was still shaking. My head was fuzzy, and I was in so much agony that I thought I might have to go to the ER.
I went to bed (in my bed this time), but was even worse off. I tossed and turned, partly due to my stomach hurting, but partly due to tense, twitching leg muscles. I kept having to reposition to try and keep both my stomach and my legs under control. I got up and down to go to the bathroom several times (much to my poor cat’s distress). Finally, after one particularly violent session, I managed to sleep.
I got up in the morning, stumbled through a shower, and made it in to work…and here we are. Right now I’m sitting at my desk feeling somewhat nauseous, and with legs that are very tight and sensitive to pressure. I’m going to try a bit of mint tea in a bit, which I hope will settle my stomach. Maybe a bit of toast, too…not sure I could keep much more down.
As for what I took last night, I did my normal 3-pill dose of Pramipexole, 1 potassium vitamin, 1 vitamin B pill, and one vitamin D pill. I’m out of magnesium, or I would have taken one of those, too. This is all my normal nightly routine, except for the lack of magnesium.
I also drink one potassium drink (VitaminWater Revive Zero) each night, as the extra potassium helps my legs (and drinking it instead of taking pills is supposed to keep it from being toxic). This has been approved by my doctor. I actually drank one and a half last night, but most of that came after the trouble started.
Long (and graphic) story short, it looks like this whole incident was either food poisoning or a flare, but I cannot think what I ate that would have given me food poisoning, so I’m leaning towards a flare. In the interest of full disclosure (and because I haven’t talked enough about bodily fluids), I am on my period, and last night was the first bad night. I’m not sure if that contributed significantly, but I’m sure it didn’t help.
I know this entire entry is TMI, but I’m hoping I can use this blog to document symptoms and show my doctors how severe this disease is, and the toll it’s taking on my daily life. If I can just make someone understand, maybe they’ll do more tests and pursue it more aggressively, and figure out what’s wrong.
Wednesday, April 13, 2016
Saturday, April 9, 2016
The Beginning
Scene: The night of January 23, 2016. Our main character, Amy, is
hunkered down in her apartment, dreading the next day. Not that the next
day is something she'd normally dread—a day full of board games with good
friends. But despite the delights that
awaited her, she lay on the couch, tortured by anxiety, dealing with worse than
normal period-induced (or so she thought) intestinal distress, and trying to
get the agonizing tension and cramping in her legs under control. Outside, a blizzard raged, shutting down the
city.
On the 24th, Amy trudged four or five blocks through the debilitating snow, past trapped cars and empty intersections, to her friend’s house for board games. She spent the day there, enjoying herself yet fighting against the growing pain in her legs. When she went home that night, she doubled up on the potassium that she usually took to control the cramps in her legs. The unexplained anxiety had grown. Nausea and intestinal distress, as well.
The case was much the same on the 25th, except that the snow intensified. Amy’s friend convinced her to spend the night on the couch rather than trudging back to her apartment. When she finally went to bed, however, her legs became unbearable. She got up and down to use the restroom several times. When she did lie down, her legs felt unbearably tense, the muscles twitching and jumping. She tossed and turned, shaking her legs, bending them to try to reduce the pain. At last, around 5am, Amy snuck out of her friend’s house, made her way home, and
doubled up on both potassium and magnesium.
Over the next week things got, if possible, worse. Amy’s sister recommended a sports drink high in potassium, and Amy stocked her house full of it. She remained in agony, however, with nothing providing relief. At last, on the first of February, Amy went to the doctor. She tried to explain the pain, the symptoms, but fear and lack of sleep made her incoherent (and seemingly insane). The doctor diagnosed our hero with stress.
Finally, on the 8th of February, Amy’s symptoms went into moderate remission. They weren’t completely gone, but the major flare—as she came to call it—had passed. She overcame her fears, however, and got bloodwork done—all of which came back normal. The original test was for CBC with Differential/Platelet, a Comprehensive Metabolic Panel, a Lipid Panel with Cholesterol/HDL Ratio, Iron and TIBC, Hemoglobin A1c, Panel 083935, RPR/Rfx Qn RPR/Confirm TP, Thyroid Cascade Profile, Vitamin D/25-Hydroxy, Vitamin B12, and Ferritin/Serum.
Flare #2 started on February 12th, and lasted through the 16th. A mini flare showed up on the 23rd, and was gone by the 24th. On the 25th of February Amy had another meeting with her doctor, who oscillated between stress and restless legs, and at first recommended muscle relaxers, but ended up prescribing Pramipexole. Our hero unfortunately kept poor records over the next month, but another major flare began on the 25th of March, was exacerbated by an EMG test on the 30th of March, and subsided by the second of April…only to flare back up on the 6th following a high-stress family emergency. During this time Amy increased her dose of Pramipexole and had more bloodwork done, testing Adolase and Creatine Kinase Total Serum—again, all tests were normal, as was the EMG. Amy had a reaction to the numbing spray they used prior to the second blood test, but otherwise all else was fine…except that her legs were so painful that at times she could barely function.
This brings us to the present day. I, as you may have guessed, am Amy, and I’ve been struggling with this mystery disease for three and a half months. I have started avoiding social engagements and travel, and spend an insane amount of time trying just to function. There’s a lot more I could write, particularly in terms of background and linked symptoms, but I think this is enough to get us started. This blog will be my way of tracking both the disease, and my attempts to identify it.
On the 24th, Amy trudged four or five blocks through the debilitating snow, past trapped cars and empty intersections, to her friend’s house for board games. She spent the day there, enjoying herself yet fighting against the growing pain in her legs. When she went home that night, she doubled up on the potassium that she usually took to control the cramps in her legs. The unexplained anxiety had grown. Nausea and intestinal distress, as well.
The case was much the same on the 25th, except that the snow intensified. Amy’s friend convinced her to spend the night on the couch rather than trudging back to her apartment. When she finally went to bed, however, her legs became unbearable. She got up and down to use the restroom several times. When she did lie down, her legs felt unbearably tense, the muscles twitching and jumping. She tossed and turned, shaking her legs, bending them to try to reduce the pain. At last, around 5am, Amy snuck out of her friend’s house, made her way home, and
doubled up on both potassium and magnesium.
Over the next week things got, if possible, worse. Amy’s sister recommended a sports drink high in potassium, and Amy stocked her house full of it. She remained in agony, however, with nothing providing relief. At last, on the first of February, Amy went to the doctor. She tried to explain the pain, the symptoms, but fear and lack of sleep made her incoherent (and seemingly insane). The doctor diagnosed our hero with stress.
Finally, on the 8th of February, Amy’s symptoms went into moderate remission. They weren’t completely gone, but the major flare—as she came to call it—had passed. She overcame her fears, however, and got bloodwork done—all of which came back normal. The original test was for CBC with Differential/Platelet, a Comprehensive Metabolic Panel, a Lipid Panel with Cholesterol/HDL Ratio, Iron and TIBC, Hemoglobin A1c, Panel 083935, RPR/Rfx Qn RPR/Confirm TP, Thyroid Cascade Profile, Vitamin D/25-Hydroxy, Vitamin B12, and Ferritin/Serum.
Flare #2 started on February 12th, and lasted through the 16th. A mini flare showed up on the 23rd, and was gone by the 24th. On the 25th of February Amy had another meeting with her doctor, who oscillated between stress and restless legs, and at first recommended muscle relaxers, but ended up prescribing Pramipexole. Our hero unfortunately kept poor records over the next month, but another major flare began on the 25th of March, was exacerbated by an EMG test on the 30th of March, and subsided by the second of April…only to flare back up on the 6th following a high-stress family emergency. During this time Amy increased her dose of Pramipexole and had more bloodwork done, testing Adolase and Creatine Kinase Total Serum—again, all tests were normal, as was the EMG. Amy had a reaction to the numbing spray they used prior to the second blood test, but otherwise all else was fine…except that her legs were so painful that at times she could barely function.
This brings us to the present day. I, as you may have guessed, am Amy, and I’ve been struggling with this mystery disease for three and a half months. I have started avoiding social engagements and travel, and spend an insane amount of time trying just to function. There’s a lot more I could write, particularly in terms of background and linked symptoms, but I think this is enough to get us started. This blog will be my way of tracking both the disease, and my attempts to identify it.
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