I have been correctly diagnosed with conversion disorder, a relatively rare mental health condition that shows physically. In my case, it is mostly seen as muscle jerks or spasms. They can occur in any muscle in my body that is conciously or subconciously controlled. In and of itself, it's not a dangerous or deadly condition. It's annoying, it's frustrating, and aggravating, and it's upsetting, but it's not deadly. I started having symptoms in 2000, muscle tremors that looked somewhat like I was shivering, very rapid, very jerky, somehow not too scary for me, but disconcerting for me and those around me who saw my symptoms. It got worse, until my body was jerking around so badly that it looked almost seizure-like, my whole body was moving, I'd rock back and forth violently at the waist, slamming my body around like a rag doll. I was convinced to go to the emergency room after a particularly bad night. I was given clonozopam, told that it appeared I was having some sort of stress reaction, and sent off. Over the course of a few weeks, my symptoms slowly decreased and disappeared. That summer they told me I had 'myoclonic episodes' - which translates into 'muscle jerks for no apparent reason. I was given antiseizure medication, which I took for a month or so then stopped because I hadn't been having symptoms, and tested for epilepsy with no results. I had no symptoms for over a year, then suddenly I started 'twitching', as I referred to it, again. I was traveling abroad at the time, and by the time I got home, my symptoms were minimized again. When I returned home, I found a new job that I loved and was working and symptom free for a few more months. Then around christmas time the program was cancelled. I started having to pee more and more frequently, had a lot of bladder discomfort. I went to my GP, and was told that I must have a UTI and was put on antibiotics. They did nothing. After the first round, I called my doctor's office back, told them I was no better, and was given another round. I started getting worse. I had frequent urgency, usually couldn't make it to the bathroom on time, and constantly felt like I needed to pee, even right after I finished. I was referred to urologists.
The urologists found no sign of infection, but realized that my bladder wasn't emptying. They decided that the UTI I'd had must have set off some sort of problem. I wore pads all the time and did the best I could. Every time I came in, they'd catheterize me to empty my bladder. I kept coming back every week with the same problem, and nothing any better. So I was catherized for a week, in hopes that removing the stress from my bladder(and the constant distension) would allow it to fix itself. I got worse. Don't ask me how, but I became even more uncomfortable and had even less control. I was afraid to go any where because I was running to the bathroom every few minutes. They tried several different bladder control pills - some of them had no effects, others were worse - I'd continually feel urgency, but I couldn't pee because of the medication. I'd be even more uncomfortable then usual for hours.
Then the muscle jerks came back. I went back to the neurologist who had given me to anti-seizure medication, and the only thing they could think of doing was getting an MRI of my back to see if I had some kind of damage there that was affecting my bladder. A week before that MRI was scheduled to happen, my muscle jerks suddenly got so much worse that I was shaking almost constantly, I'd have basically constant movement that was nearly seizure-like - each episode would last for up to a minute and they'd happen pretty much every minute. I couldn't be left alone and so was taken to my parents house from my apartment. A few days later I was admitted to a hospital near my neurologist. I was in the hospital for a week, was again tested for epilepsy(negative), had the MRI done of my spine(had to be sedated for it because I couldn't stop moving when I was concious), was introduced to a new urologist, and at the end of the week saw a psychiatrist who declared that I was hysterical, depressed and had anxiety issues. I was put on a wide variety of anti-seizure medication, some pills for my bladder, depakote, antidepressants, and one of the doctors suggested I go to the center for movement disorders at Columbia Presbyterian. THAT was where I finally got some answers. I took the first available appointment, which was a couple weeks after I got out of the hospital, and the doctor THERE looked at my movements and suggested it was conversion disorder. He set me up with a psychiatrist he knew, who confirmed the diagnosis. Turns out that both the muscle movements and the bladder problems were from my subconcious trying to protect me from the stresses I was dealing with. The bladder issues were actually ALSO muscle problems, which is why the doctors weren't helping me - there wasn't anything physically wrong, but one of the muscles involved in the process of urination was basically spasming shut, which was why my bladder wouldn't empty - and why the pills did no good.
The primary treatment for conversion disorder is antidepressants and talk therapy and so off I went on a search for a good psychologist.
After I lost another job three months in, I basically only left the house for doctors appointments. I couldn't drive, so had to mostly get around on public transportation (sometimes I'd get rides from friends), but I muddled through. I got pretty depressed in there, but just kept going. My urinary symptoms decreased very very slowly, but they did decrease, and with my muscle movements I was slowly able to go longer and longer between bad sessions. I twitched, I shook, I limped, I pulled muscles, I had strangers yell at me for hitting their seats on the train, had other strangers try to hold me down because they thought I was having a seizure, but I kept going.
I kept slowly getting better. But one of the pills my psych put me on was geodon, and that actually started me on the path of developing flycatcher's syndrome. Fortunatly, my mother and I noticed it and forced him to get me off it. The process of getting off that stuff slowly enough that the flycatcher's syndrome wasn't permanant took nearly a year in itself, and I had to cut up the pills into quarters before the end and put them in applesauce. I was really sick of applesauce before that was over!
I was sleeping nearly 11 hours a day, seeing a chiropracter(to keep myself from pulling anything too badly out of alignment with my movements), psychologist twice a week, psychiatrist once a month, massage therapist every week or so(whatever I could afford), and researching for other treatments.
After a couple years I got it so that the movements were less of an issue than the bladder problems so I decided to try to explore treatment again. My bladder symptoms had slowly decreased, then were nearly gone(I managed to go nearly 2 months without having to wear any sort of pad!!), then they changed. I still felt frequent urgency, but apparently it was because the muscle that had been holding itself closed for all those years(or another one that performed a similar duty) refused to close! So now my bladder was constantly emptying and everything I drank basically ran right through me, and even when I didn't drink anything, I kept needing to pee.
I had to be hospitalized again because my symptoms were so severe that while I was rocking back and forth, I was slamming my knees into my chest and I pulled the muscle connecting my breastbone to the bottom of my rib cage. I was in so much pain that I thought I'd either broken my collarbone or was having a heart attack. During that week-long stay in the hospital, I had a really great team working on me, and they found me a great psychologist (who I'm still seeing) and helped me to find some better medications and a better treatment plan. A couple months after this, I finally went to the only urogynocologist in my area to see if she could help me with the bladder issues I still had.
Boy was she a mistake! The story of my misdiagnosis must go elsewhere, but the short version is that her nurse misreported my level of pain during the test and so she decided that I had interstitial cystitis. After several months of extreme diet and medication, I got a second opinion and proved that I did NOT have and had never had interstitial cystitis.
My muscle jerks were down to sometimes not happening at all for a day or two, and 'bad days' meaning that I might have symptoms for brief periods a few times a day. It didn't prevent me from working, just made me look 'interesting' some days. My period was frequent and irregular, starting when I'd had the cystoscopy in December(the second opinion), and I'd had frequent yeast infections since about the year before that. I tried to pass off the bleeding as stress, and just keep going. My conversion symptoms got worse again when I lost my job, and I've been slowly recovering since.
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