I haven’t written anything here about illness for a while because politics has been a bit overwhelming but today I have been thinking about unwanted movement. Not necessarily involuntary movement, but also movement that can happen without thinking about it. I move around quite a lot, and I find it very exhausting on top of my other illness. (I have ME/CFS, diabetes, migraines, depression and anxiety and a few other things.)
Here’s a list of the movements I tend to do.
- Jiggle my legs
- Jerk my legs forward
- Rock my torso and sholders
- Jerk my torso forward (bending at the waist)
- Move my head side to side
- Jerk my head side to side
- Fiddle with objects – generally click, rotate, fold or twist things
In addition to the above I also have a few other intermittent problems which might be a result of whatever causes my movement.
- Repeatedly clear my throat
- Make small humming or grunting noises
- Pick at my fingers and cuticles
- Pick scabs
- Tear at my lips
Restless Legs Syndrome
There are a few things that these could be attributed to. My official diagnosis for the leg movement is Restless Legs Syndrome and I have been taking pramipexole for a few years to try to control it. I don’t actually know if it has been successful at that, but every time I try to reduce the dose I get fairly extreme restless legs – worse than I had before the drug – as a withdrawal symptom.
Restless legs syndrome (RLS) is a neurological disorder characterized by an irresistible urge to move one’s body to stop uncomfortable or odd sensations. It most commonly affects the legs, but can affect the arms, torso, and even phantom limbs. Moving the affected body part modulates the sensations, providing temporary relief.RLS sensations could be pain, an aching, an itching or tickling in the muscles, like “an itch you can’t scratch” or an unpleasant “tickle that won’t stop”, or even a “crawling” feeling. The sensations typically begin or intensify during quiet wakefulness, such as when relaxing, reading, studying, or trying to sleep. In addition, most individuals with RLS have limb jerking during sleep, which is an objective physiologic marker of the disorder and is associated with sleep disruption. [Taken from Wikipedia]
I’m not convinced that what I have is actually RLS. I don’t get an itch, tickle or crawling feeling, but I do get an urge to move my legs which I can resist for a while but eventually have to give in to. It happens to me at any point in the day when I keep still for a while but especially when I am in bed. I’ve always had a problem with this, even when I was at school I found it very uncomfortable to keep still. (Although that was also related to pain when sitting cross-legged on the floor, something that I would now refuse to do but could not at school.)
My throat clearing and noises are probably tics, although I have never brought this up with a doctor and have no diagnosis for them. Tics are described by NHS Choices as follows:
Tics are rapid, repetitive, involuntary contractions of a group of muscles. They can occur in the form of either:
- motor tics (bodily movements)
- phonic or vocal tics (sounds)
Most tics are mild and infrequent and they may not even be noticeable to the person experiencing them or to others. However, some tics can be frequent and severe. Tics can also be a symptom of Tourette’s syndrome (see below).
Types of tics
Motor tics can affect any part of the body, but they often involve the muscles of the face, eyes, head and neck. These produce movements such as:
- facial twitching
- shrugging of the shoulders
Common phonic tics include:
- clearing the throat
Some people with tics may be able to suppress (control) a tic for a short period of time, although this is said to be like trying to hold back a sneeze. They feel increasing tension until the tic is finally released. [Taken from NHS Choices]
To be honest, the description of increasing tension until the tic is released sounds like my restless legs too. An increase of tics in response to stress is mentioned too and I can identify with that. I have noticed that the sudden quite forceful jerking of my legs which often results in ramming my knees into the underside of my desk often increases when I am stressed about something.
There is another possibility for some of this. Stimming. Stimming is described thusly:
Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner. Stimming is known in psychiatry as a “stereotypy”, a continuous, purposeless movement. [Taken from Autism Wiki]
I think stimming could be the cause because I am currently on a waiting list to see a specialist about possible Aspergers syndrome / Autistic Spectrum Disorder. If I am affected by this then it is very mild and I have mostly learnt how to work around the social anxiety problems involved however stimming remains a possibility.
The key for stimming is that it is voluntary. I think that rocking my torso may fall into this category, and maybe the picking at my skin and scabs. I actually don’t rock as much as I feel the urge to because I feel so stupid doing so, and embarrassed that my wife or anyone else might see it.
My picking at loose bits of skin, cuticles, lips, wounds and scabs is probably dermatillomania, which is a mental health problem that may be related to OCD.
Dermatillomania is defined as “repetitive and compulsive picking of skin which results in tissue damage. [Taken from Wikipedia]
I’m not sure there’s anything more I can say about it other than this quote. This problem has at times left me with horrible bleeding wounds all over my fingers and lips. I haven’t found it so bad at the moment which may be because of the anti-depressants that I take although I have been picking scabs on my back, head and shoulder which as a result are not healing up.
Ultimately I do not know why I do any of these movements. I do know that they intrude on my life, prevent me from sleeping and resting, make travelling in cars and buses hell and make sitting still painful. I have to choose where I sit based on being able to get out to stretch. I had to choose a car which had lots of leg room and cruise control because otherwise I would end up in pain from not moving or crashing the car from jerking my foot on the accelerator. I find these movements highly embarrassing when out in public and I wish they would go away.