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My name is Jessy and I’m a 31 year old wife and mother. I was a Diesel Mechanic for a farm equipment company from September of 2008 until February 2009. I was in very good health; I had a set sleep schedule, ate regular, healthy meals and had regular bowels. Physically, I was fit, with excellent muscle tone and good stamina. Mentally, I could remember almost everything that happened each day as well as everything from my past, I also had a great eye for details. Emotionally, I was immensely happy, I loved my job, my family was a joy for me, I had great friends and I was glad to get up each morning. We were getting ready to buy a house and happy to know we never had to move again. To put it simply, life was wonderful.
In late January 2009, while lying in bed to go to sleep, I got a sharp pain in the upper right quadrant of my abdomen. The pain lasted about 30 seconds and then just went away, I disregarded it when it didn’t happen again. Over then next 3 days the pains increased in severity and frequency and I became worried and finally went to the doctor. A few days later I began feeling a continuous burning sensation in the right side of my abdomen as well as the random sharp pains. I tried to continue working but by February first or second I was no longer able to. I began getting sharp pains in the left side of my chest a few days before the pains in my abdomen started but had brushed it off as a possible strain from working to hard.
After a short time I began to realize that movement triggered the pains in my right side abdomen and left side chest. There were times that I could go most of the day without being in any pain, until I got up to go to the bathroom, or get something to eat or drink. The simple act of standing up could trigger enough pain to put me on my knees.
A month and a half after the pain began the doctor I was seeing at the time convinced me that my best option was an exploratory laparoscopy. I was told that if nothing were found that could be the cause of my pains they would then remove my gallbladder and appendix to see if that would help. Believing that I had no other options, I agreed. I came out of surgery screaming the moment I woke up, I was completely incoherent. I don’t even know how to fully describe what I experienced, just that I was terrified. It turned out that they removed my gallbladder and appendix first and then looked around. The on-call surgeon came in to check on me 24 hours after the surgery and sent me home, regardless of the fact that I had not received adequate pain relief though out the night and was still in extreme pain. I had surgery on a Friday and did not receive any pain relief until Monday when I went in to see my doctor in his office. When he learned that the surgery had not helped, but rather made my condition worse, he sent me to a pain specialist and refused to look any further.
After surgery the sharp pains were no longer triggered just by movement, I could be perfectly still and still get a sharp pain. The pains were also no longer in just the right abdomen and left chest, but any where through out the front of my torso. On top of that I now have tearing pains through out my ribs and abdomen, essentially the front of my torso, which are constant but at varying degrees of severity. I came to realize I was also having problems with my memory, both short term and long term, including loosing words mid sentence or completely forgetting what I was talking about. I began sleeping excessively, an average of 10 hours at a time, on occasion as long as 18 hours, and I am always tired. One of the more frightening things is that my legs give out for no reason, it happens without any pain or any triggers that I’ve noticed.
By the end of the summer of 2009 I learned another trigger for my pains, heat. It became difficult for me to leave my home, because I can control the temperature in my home. It actually got worse over the winter and we had to keep our house around 55°- 65°. Even with the house so cold I still had to frequently go outside into the snow for several minutes at a time just to cool down. Something as simple as the touch of a warm hand or the sun shining directly on me can bring me to tears.
At the end of December 2009 I was placed of Lyrica and had an adverse reaction to it, I felt horribly ill and tire. I slept almost 40 hours, minus 30 minutes on Christmas day that I got up to watch my daughter open her presents. I discontinued taking it but had added sleep problems that started immediately after. Now, rather than just sleeping excessively I am also dealing with insomnia.
This is an average week of sleep for me:
Monday; went to sleep at 6am, woke up at 2pm
Tuesday; went to sleep at 11pm
Wednesday; woke up at 6:30am
Thursday; went to sleep at 3:30am, woke up at 5pm
Friday; went to sleep at 2am, woke up at 1pm
Saturday; went to sleep at 5am, woke up at 2:30pm
Sunday; went to sleep at 2am, woke up at 3pm
Sleep 8 hours, awake 33 hours, sleep 7 ½ hours, awake 21 hours, sleep 13 ½ hours, awake 9 hours, sleep 11 hours, awake 16 hours, sleep 9 ½ hours, awake 11 ½ hours, sleep 13 hours.
At this point my body has lost most of its muscle tone. Opening a bottle of water can sometimes be difficult for me, or trying to carry a bag of groceries in from the car. I rarely drive anymore because of the randomness of the sharp pains and how weak my legs are, they tend to shake when I press the clutch. I have joint pains that began getting worse as my illness progressed, primarily my left shoulder, left hip and right knee. Both shoulders, hips and knees cause me pain, but the ones listed are worse due to prior injuries. At times the pains in my hips and knees make it difficult to even lie down and rest, let alone walk.
The pains in my chest make it very difficult to breathe deeply, to laugh, cough, or sneeze. God forbid I get the hiccups, which would leave me in tears. I do not often cry because I know just how much it will increase my pain, yet it seems that because of this I have not been taken very seriously by some physicians. I’ve been asked before, “If you’re in so much pain why aren’t you crying?” the simple answer is, I know better. I know how much worse my pain will be if I let myself cry. On top of that, I have no desire to scare my child. She doesn’t need to know how much pain I’m in, it’s bad enough that she knows her mommy is sick.
As of August 29, '10 I have a new, even scarier symptom, full left side nerve pain. It started at my left eye, spread to my jaw, ear and scalp and went from scalp to toes by morning. It was split down the middle, just my left side and lasted for 3 days before tapering off, I could feel the left half of my throat when I swallowed. It hasn't been full left side since, just random parts of my left side, but it still scares the Hell out of me.
Sorry that this was so long, it is actually the essay I wrote to Dr. Bolte in NY, the reason he agreed to take my case (if I can raise the funds to get there). I just figured it was the simplest way to tell my story, my memory is so bad anymore that it would have taken me weeks to write it out again (the essay took me over a month).
I am so thankful that I found this forum, thankful to know that I am not alone.
Much love,
Jessy
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