Thanks for the warm welcome.
Due to the resulting social isolation I don't have much friends left to talk to, and even with the few people still around I can mainly hope for sympathy, not empathy.
I've made appointments with various physicians, the earliest coming up with my general practicioner in early May. The appointment with a neurologist, however, isn't due to mid August. All I can do right now is sit around and wait. I imagine most of you do know very well the most excruciating thing for a RLS afflicted person is to sit around and wait.
So I hope I don't bother anyone by telling my story, conditions and sharing thoughts and observations I've made these last few days.
I can't really tell for how long I've been actually suffering from my condition, but the insomnia became heavily noticable about 15 years ago. I've had increasing trouble falling asleep and staying asleep, resulting in circadian dysrhythmia which effectively screwed up my daily life. Chronic fatigue, avolition, concentration disorders, restlessness, anxiety, efficiency loss, social isolation, depression, you name it.
I tried to manage somehow on my own, since the physicians I visited weren't able to provide help; some even accused me of messing up my circadian rhythm.
All of them, however, suggested psychological therapy which I never persued since I didn't feel the origin of my disorder to be mental; I always felt it to be physical.
In early 2009 I thought I found a new hint and went to, yet, another physician, got an entire check-up, including a 24h EKG and whatsoever. In addition to elevated blood pressure he discovered a minor hypothyrosis (which was already known to me - though untreated, since it was varying) and we decided to try a hormone treatment. I also went to a nearby psychologist/neurologist to help with my increasing anxiety. He prescribed some depressant (I don't know what kind).
I have no clue if it was the hormones or the depressant or the combination of both, but my condition worsened by the day. I was unable to enter deep sleep, remaining only in REM sleep, still disturbed every few hours, until exhaustion took over and the REM started to bleed into the waking. I began to hallucinate.
Apparently I bothered my neighbors, so they called the police and I got locked up in a psychiatric ward for four months, diagnosing a psychosis and schizophrenia. I got heavily drugged and sedated, until they finally released me with the statement there was nothing they could do for me anymore.
It took me about half a year to re- and interact with my environment again, another half a year to regain my language faculty and yet another half a year to be able to think clearly.
It's been five years now since this episode, and the insomnia remains.
When I stumbled upon the term of RLS the first time through popular media, several years ago, I could relate instantly, being all too familiar with the uncontrollable, subconscious urge to rock my leg/foot. I even remember my parents telling me to stop wiggling/fidgeting. The very restless leg...
But I didn't give it a second thought, dismissing it as an annoying, yet simple nervous issue, unable to imagine the severe impact it might have.
Recently I stumbled upon the term once again and while currently having a hard time sleeping anyway, a few days later I literally woke up with my foot shaking.
Both occurances combined had me look up RLS on Wikipedia for the first time. And, boy, was I in for a revelation!
Except from the very apparent evidence of constantly rocking my leg I found myself familiar with most of the symptoms. For some of them I had to start observing myself since the whole process became automated and subconscious over time.
Though the restlessness is occuring throughout my entire day it's getting worse in the evening. Occasionally I'm also experiencing PMLD, during and outside of sleep.
To even initiate sleep I need a long process of calming down by reading or watching TV-shows, during which I noticed only now the constant swimming motion of my feet (the picture of a cat's tail also came to mind).
If I'm able to sleep at all I'm at least awake once a night (currently it's up to three or four times), getting up to use the bathroom, and I found it helps to have a small snack to fall asleep again.
The only symptom I wasn't familiar with up until now is the often described 'creepy-crawly' feeling. Now that I know about this I'm noticing it as well. I would describe it as tingling, warmth, pressure.
I would never have related it to the urge to rock my leg nor describe it as particularily unpleasant, but I guess motion might be a subconscious physical reaction to literally shake the feeling off. I do know a rare sensation of pain, though.
All of that being told, please allow me to share some observations and suspicions I came across reviewing my lifestyle and daily routine.
I'd like to hear your thoughts and opinions.
- I'm a smoker. I've never felt my smoking as much of an addiction to nicotine than the relief being caused by the motion of the act itself. I always felt it more like somehow physically expressing myself.
- In very early childhood I developed a behavior my parents called 'ribbling'. I take a small fold of soft fabric (clothes, usually) between two fingers, rolling it back and forth.
- I tend to gnaw on my lips or scrape at my nailbeds, sometimes to the blood.
All of these patterns increase especially while being in public (which causes stress, nervousness, anxiety). I figure over time I somehow realized the attention a restless leg draws in public and developed compensatory behavior.
- I find myself frequently going to the bathroom, even without an actual need to release myself.
- I've been overweight for almost my entire life. Eating compensates for the energy I should be getting from a good night sleep. I notice this when the insomnia is worst.
- I'm having heavy, often disturbing dreams, which I can now relate to the restless sleep and the urge to move.
- I'm experiencing heavy, almost quaking heartbeat while lying down and trying to get to sleep.
Concerning compensatory behaviour I have a few additional notes:
- My 'going-to-sleep-ritual' includes next to reading or watching movies/TV-shows a glass of mild alcohol and two to three joints (marihuana). That's what it takes to effectively calm me down. It might be counteractive to the sleeping attempt, but it keeps the anxiety in check since I quite often experience fear of even going to bed; fear of the insomnia; fear of my dreams.
- Exercising is close to impossible. I simply lack the energy due to the constant sleep deprevation. Activity in general is exhausting.
- I do release myself sexually every night. The post-orgasmic relaxation helps in finding sleep.
And one final thought I've had earlier regarding the creepy-crawly feeling. While trying to describe it I had the sensation of blood massing up in my legs (hence the warmth, pressure, tingling, also the often described pulling or pins-and-needles).
It is a known fact that when in state of fear the body redirects blood into the legs to be able to run away.
So this is just a wild guess, but I was thinking: if RLS somehow causes to pool blood into the legs it may explain the constant urge to move.
Thank you for listening.
I welcome any thoughts and input