Hi everyone,
I have been having a whole series of medical problems, mostly due to widespread pain. I have had 6 operations in the last 16 months. The first two were knee scope (severe pain in my knee, no structural problem found in MRI or X-Rays, had a large mass that they removed as the possible problem, cortisone injection helped). Second surgery was gastric sleeve as due to so much pain I was finding it difficult to exercise. About a month after the sleeve surgery I began having abdominal pains. No reason for the pain was ever found. The third surgery, a double hemmerhoidectomy, turned out to be the life changer as it was extremely painful both before and after the surgery. I was after this surgery that I began having mental lapses much more frequently than I had ever had them before.Typically the worst episodes would come when I would be at a party or in a store with my daughters (5 year old twins). I get a feeling of being overwhelmed, become dizzy and lightheaded, and feel like I can hear every single sound around me. It happens so suddenly that it is almost like somebody hit me in the back of the head, but did not knock me out. On top of that there have been a handful of times where I would be driving somewhere and end up someplace else before I realized I was not where I was intending to go. For example, I was driving to my counselours office one day and ended up at my church before I realized I was not going to church, but the counselours office. Or I would head to a store and be 3/4's of the way to work before realizing it was Saturday and I was not going to work, but the store that was only a mile from the house. I also had a period where I was not able to control my bowels anymore and was constantly having accidents. Finally, I was also having periods of extreme mood swings where I would get very angry at the slightest things, when I am typically a very laid back person.
About 4 months after the hemmerhoid surgery I developed an anal fissure. I had no idea what they were, but realized when I was told that was the problem, I actually get them quite frequently. The fissure would not heal on its own and back to the OR to have that repaired. After that surgery the pain still did not go away and I was sent for biofeedback therapy. Once the biofeedback therapy was complete I went through a period with minimal pain. I went for about a month without needing pain meds and life was looking good. However, after that the pain came back and it also felt like my gums were inflamed. I could not see or find any inflammation, but it turned out that one of my wisdom teeth had a cavity. The surgery for the wisdom teeth was not too bad and I had the surgery on a Saturday and was back to work on Monday. But after the wisdom tooth surgery the abdominal pains began coming back. I had pains in my legs and in my lower back for years before this and often times it felt like my joints were stiff and ridgid. I hurt in the mornings the most when I wake up and as the day goes on I generally begin to loosen up. But the abdominal pain was not clearing up. I also was having severe pains in my elbow. The doctor grabbed me by the elbow, I screamed and he told me I had tennis elbow and a cortisone shot took care of that issue.
Next, I began to have really bad gas pains that were doubling me over for hours at a time. The first couple of times I wrote them off to getting air trapped from my CPAP machine since I had been losing so much weight. The third time it happened my daughter had a stomach ache a few days before and the flu was going around her school. Since this episode included nausea and vomitting, I convinced myself it was the flu, even though it felt like no flu I ever had before. The pains in my abs were still bothering me and then I had another mental episode while at a Cracker Barrel having breakfast with my family. While in the store I was trying to round up my wife and daughters and every time I had two of them by the time I got a third, one would be somewhere else. I had the episode and went home and relaxed. I ended up taking a nap and when my wife tried to wake me for church that evening, I could not wake up. I think I woke up for dinner and immediately went back to bed. The next day I was hanging some curtain in my daughte's rooms and I could not keep my balance. Everytime I came down off of the step ladder I would have to use the wall to stop me from falling. I began to have what felt like vertigo and did not drive for the next two weeks. I do not remember much from this two week period and my wife is usually the one who has to tell how I was. The most memorable story is when we were driving down the road and I saw an ambulance with lights on pulled over to the side of the road and I saw an EMT doing what looked like yard work. It turned out to be a fire truck putting out a grass fire. It scared me enough I went to a neurologist and had an MRI on my brain. He told me I was taking too much Prozac and that was what happened. My psyche doc told me that is not what happens six months after taking Prozac and she was not convinced that was the issue. We cut the dose and gradually built back up since then and have not had a repeat incident.
Shortly after this episode I had an accident that made all my other accidents look minor. I was at work at the time and after cleaning up as best as I could, I called my coworker and asked her to bring me my laptop and bolted out the door. I visited another neurologist for a second opinion and she confirmed what my psyche doctor said and we scheduled some tests. I also developed another fissure and went to see the surgeon who helped me with the last one. He set me up with a gastro specialist since the fissure was in a rare location and he suspected I might have had Crohn's disease. So the gastro set up a colonoscopy for a couple weeks out.
The day I was on my way to have the next MRI done on my brain, I started vomitting just before I left the house. It happened again in the car on the way. Since my MRI was being done at the hospital I stopped my the ER. It turns out I had pancreatitus due to gall stones moving into my pancreas. So the performed one procedure to remove the stones and a second procedure to remove the gall bladder. I put the neurological tests on hold and began to follow up on the Crohn's diagnosis. The colonoscopy showed I had ileitis so I had another MRI to determine if it was Crohn's. At this point I was mentally exhausted. The abdominal pains came back, my pins & needles feeling that I always had in my left thigh turned into muscle pain, my back pains were coming and going, and the mental episodes were returning on a regular basis. The MRI revealed no sign of Crohn's and I got an IBS diagnosis. So with my Prozac I am now taking a low dose of amitryptalene. I just started that this week after a trial with Bentyll provided do improvement in my IBS. I also realize I forgot to mention I have diarrhea nearly all the time.
With the Crohn's issue behind me and the pain still bad, I started to prepare myself for a return to the neurologist. When i first saw her I said I had many of the symptoms present in MS, however I severly doubted that was my issue, but would like to try and figure out what had caused the severe mental episode. She had suggested neuropathy was the cause and we would do the tests to try and figure out the problem. As with all of the other suggestions I began researching neuropathic pain to see how the descriptions fit my situation. There were some similarities, but it did not seem to properly explain what my symptoms were. While researching that I came across fibromyalgia and reading the symptoms was astounded at how well it seems to fit my description of pain and the fibro fog definition seems to explain my mental episodes. I do not seem to have as many tender points in the old clinical definition, but the widespread pain index I score very high. Fatigue has just been such a constant part of my life I have accepted it as being normal. I am not bed ridden and though every morning I want to go back to bed and call in sick, I push myself to get up, stretch out the soreness, and begin my day. I had also been explaining to people that I have just accepted my diminished mental capacities as my new normal and have set up email reminders and cell phone reminders to make sure I complete daily tasks at work. Ever since the hemmerhoid surgery, if I do not fill out my timecard first thing in the morning I will most likely foget to do it that day. The slightest disruption to my morning routine will make me forget. So I have six different email and cellphone prompts to make sure I get that done. For some reason timecard hours are the highest priority for my bosses.
If you are still reading this, let me say thank you. I have an appointment with a rheumatologist in a little over a week. But as I wait for the appointment, I am looking to see how my experience matches up with others out there. Also, if there is any advice one can give as I prepare for my appointment. Any questions I should ask. Any details that may be more pertinant than others? Thanks again for any help you may be able to provide.
-Jerry