I didn't see a thread on this so figured I'd make one. Anyone else suffer from this, or have a loved one who does? A few years ago I suddenly came down with it. My case is a little different than the common symptoms which makes it a little frustrating to deal with. Here are my symptoms:
- It only happens right as I'm dozing off to sleep. My leg suddenly jolts as if someone is running a mild electrical current through it. It isn't painful, but it isn't a good feeling. No matter how tired I am, it always wakes me up. This will continue happening for hours on end, right as I'm dozing off again. It never happens during the day which is odd compared to most who have this issue.
- It only happens in one leg per night. Seems to be random which leg is affected. I sleep on my side and it always seems to be the leg that is elevated. Sometimes rolling onto the side affected helps make it stop, but that could just be coincidence.
- Most of the time I can feel a build up of energy happening in the leg affected. This is very hard to describe. Imagine you are very slowly starting to tighten the muscles in the leg and that is kind of how it feels. I'm totally relaxed though (and often literally slipping into sleep).
- The restless leg occurs for weeks on end at night, then stops for weeks mercifully. Which is really odd.
- I've cut out the common things that can trigger restless leg, such as caffeine (though I have it again now that I know it wasn't a trigger) and late afternoon exercise.
I've seen a wide range of doctors over the issue so far, up to and including one sleep clinic which was mostly a waste of time. They confirmed the issue after strapping some wires up to me and monitoring me overnight in their clinic, but that was it. The test was for my general doctor who turned out to think he could fix me by cracking my back and having me get massages. Needless to say he is no longer my doctor. My current doctor whom I respect far more than the last is having me go to a specialist that is apparently highly rated, but they don't have an opening for 6 months. Ugh.
It doesn't seem to be related to diet as I've changed that around over the years. I've suffered from Ulcerative Colitis for 16 years now, with some of those early years being very damaging. I've been on remission for years after starting a medication called Remicade thankfully, but I clearly don't absorb nutrients as well as I used to. Remicade is the only medication I've introduced around the time of the restless leg, but that isn't one of the listed side effects, and I can't really go off of it. Aside from Ulcerative Colitis, I'm a very healthy person in good shape.
Blood tests have all come back normal with the exception of my ferritin levels often being low. Iron is fine though. My gastrointestinal specialist thinks the ferritin issues are related to my early issues with Ulcerative Colitis. She just had me swallow a camera-in-a-capsule (capsule endoscopy) to be sure to rule out problems in the small intestines. I've had an infusion of InFed (iron) a couple of times to top my ferritin up. At first I thought the restless leg was related to the low ferritin levels as they seemed to be connected, but recent blood tests over the past 6 months have had me at normal ferritin levels, yet my restless leg is as bad as its ever been.
My cooky doctor had prescribed me Ropinirole which is normally used to treat Parkinson's. I responded REALLY well to that at first, even on the smallest dosage you could get from the pharmacy. I knew it worked well because as a test, I'd stop taking it and the restless leg would return the very next night, then I could take the medication and it would stop. I repeated this a few times over a couple of months to reassure me the meds were working (or the placebo effect was at least).
The trouble was that after around 8 months of this, I suddenly developed a really bad reaction to Ropinirole where even half of the smallest dose would have me sprawled out on the floor within an hour, covered in cold sweats and shakes, with me feeling like I was going to die. Again, I repeated this a few times as a test over the course of several weeks to be sure it wasn't just something I ate that day. Sadly, I can no longer take the Ropinirole.
Anyways... I'm not expecting anyone here to provide me medical advice. That is why I'm still actively pursuing treatment through my doctors. I was mostly looking for a place to dump my feelings of what I've been going through and hope to find others who have experienced something similar. It is hard to describe to others what poor sleep (~4 hours a night) over many months can do to a person's psyche. I have a supportive wife. I find myself sometimes laying there at night totally understanding why some people choose to just end it all. I'm totally not anywhere near wanting to do that, but I'm a grown man sometimes breaking down and crying at night. It is pretty awful. I then have to wake up early every morning and try to lead a normal life, hiding what I'm going through from my co-workers and family because I have a job to do, and I don't want my family to worry about something they can do nothing about.
It sucks.
Anyways, thanks for making it this far if you did so.
- It only happens right as I'm dozing off to sleep. My leg suddenly jolts as if someone is running a mild electrical current through it. It isn't painful, but it isn't a good feeling. No matter how tired I am, it always wakes me up. This will continue happening for hours on end, right as I'm dozing off again. It never happens during the day which is odd compared to most who have this issue.
- It only happens in one leg per night. Seems to be random which leg is affected. I sleep on my side and it always seems to be the leg that is elevated. Sometimes rolling onto the side affected helps make it stop, but that could just be coincidence.
- Most of the time I can feel a build up of energy happening in the leg affected. This is very hard to describe. Imagine you are very slowly starting to tighten the muscles in the leg and that is kind of how it feels. I'm totally relaxed though (and often literally slipping into sleep).
- The restless leg occurs for weeks on end at night, then stops for weeks mercifully. Which is really odd.
- I've cut out the common things that can trigger restless leg, such as caffeine (though I have it again now that I know it wasn't a trigger) and late afternoon exercise.
I've seen a wide range of doctors over the issue so far, up to and including one sleep clinic which was mostly a waste of time. They confirmed the issue after strapping some wires up to me and monitoring me overnight in their clinic, but that was it. The test was for my general doctor who turned out to think he could fix me by cracking my back and having me get massages. Needless to say he is no longer my doctor. My current doctor whom I respect far more than the last is having me go to a specialist that is apparently highly rated, but they don't have an opening for 6 months. Ugh.
It doesn't seem to be related to diet as I've changed that around over the years. I've suffered from Ulcerative Colitis for 16 years now, with some of those early years being very damaging. I've been on remission for years after starting a medication called Remicade thankfully, but I clearly don't absorb nutrients as well as I used to. Remicade is the only medication I've introduced around the time of the restless leg, but that isn't one of the listed side effects, and I can't really go off of it. Aside from Ulcerative Colitis, I'm a very healthy person in good shape.
Blood tests have all come back normal with the exception of my ferritin levels often being low. Iron is fine though. My gastrointestinal specialist thinks the ferritin issues are related to my early issues with Ulcerative Colitis. She just had me swallow a camera-in-a-capsule (capsule endoscopy) to be sure to rule out problems in the small intestines. I've had an infusion of InFed (iron) a couple of times to top my ferritin up. At first I thought the restless leg was related to the low ferritin levels as they seemed to be connected, but recent blood tests over the past 6 months have had me at normal ferritin levels, yet my restless leg is as bad as its ever been.
My cooky doctor had prescribed me Ropinirole which is normally used to treat Parkinson's. I responded REALLY well to that at first, even on the smallest dosage you could get from the pharmacy. I knew it worked well because as a test, I'd stop taking it and the restless leg would return the very next night, then I could take the medication and it would stop. I repeated this a few times over a couple of months to reassure me the meds were working (or the placebo effect was at least).
The trouble was that after around 8 months of this, I suddenly developed a really bad reaction to Ropinirole where even half of the smallest dose would have me sprawled out on the floor within an hour, covered in cold sweats and shakes, with me feeling like I was going to die. Again, I repeated this a few times as a test over the course of several weeks to be sure it wasn't just something I ate that day. Sadly, I can no longer take the Ropinirole.
Anyways... I'm not expecting anyone here to provide me medical advice. That is why I'm still actively pursuing treatment through my doctors. I was mostly looking for a place to dump my feelings of what I've been going through and hope to find others who have experienced something similar. It is hard to describe to others what poor sleep (~4 hours a night) over many months can do to a person's psyche. I have a supportive wife. I find myself sometimes laying there at night totally understanding why some people choose to just end it all. I'm totally not anywhere near wanting to do that, but I'm a grown man sometimes breaking down and crying at night. It is pretty awful. I then have to wake up early every morning and try to lead a normal life, hiding what I'm going through from my co-workers and family because I have a job to do, and I don't want my family to worry about something they can do nothing about.
It sucks.
Anyways, thanks for making it this far if you did so.
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