Have you we tried NOT to move your legs?

[Andreadrea]

When I try not to move, they start to HURT! Eventually the leg will move explosively, on its own.

[Betty/WV]

me too, my leg has moved on its own. Jumping in the air. Weird/

[moonlight]

last night I decided to try and not move , i couldn't sleep anyway and was surprised that rls hadn't kicked in ...then by 5.30am all hell broke loose the it was all down my left side arm to leg and it hurt i tried not to move and my hand corkscrewed so bad i couldn't stand the pain and had to move , it didn't help , my leg was as bad , i was like a firework going off.
got up walked bounced you name it i did it, ended up taking codeine which helped got to sleep for 90mins the then the other side started aaarrrghghg so no no no i cannot not move

[Chipmunk]

But I refer to it as a sensori-motor disorder, not a sleep disorder, mainly because most people think of sleep disorders as something trivial.

I agree, it does sound more serious when referred to as a sensory-motor disorder. It's too bad. In some senses, sleep disorders can be many times as debilitating (non-functional 24/7) but we show up for work and seem ok so people think it's not that bad. But really we are one step away from killing ourselves, intentionally or accidentally, and meanwhile are living half a life.

[Kimberly]

.... In some senses, sleep disorders can be many times as debilitating (non-functional 24/7) but we show up for work and seem ok so people think it's not that bad. But really we are one step away from killing ourselves, intentionally or accidentally, and meanwhile are living half a life.

In 2003, I was trying to drive to work in downtown Cleveland on 2 hours of sleep per night and still work a 40-50 hour work week as an Executive's Asst. In addition to the RLS/PLMW I developed severe fibromyalgia and depression and I could no longer do it. I had to retire and file for disability. It took 4 years, but in 2007 I was finally, immediately awarded SSD by a Judge's same-day bench decision. The award was based on severe, intractable RLS/PLMW, fibromyalgia and depression. On the day of my court hearing, the federal government sent in an employment 'expert' to try and say (without any consideration for my inability to sleep, inability to be dependable, low cognitive function due to sleep-deprivation) that there had to be some kind of low-skill job (i.e., 'bean counter') I could do if I was allowed to either sit / stand or alternate sitting and standing....and there are plenty of those types of positions. The 'expert' only relented due to the simple fact that I explained it wasn't just a matter of an employer allowing sitting/standing, I had to be able, as needed, to lie down from exhaustion or to walk around in order to stop the movement and he could think of no such job. As the disease progresses, WED can become disabling and I have recently told my doctor that, while it may not kill me, the side effects from the disease eventually will. The most important thing to me right now is the quality of life I live during the few hours a day I am able to function. But it is a huge relief to me that SSD was eventually awarded. If I had continued to work, it most certainly would have been a death sentence, for me.

[Polar Bear]

I retired two years ago.
How I managed to work as a legal secretary I have no idea.

My intention had always been to continue to work part time hours beyond retirement age of 60 partly because I loved my job and also as a supplement to my pension. By the time I hit 60 there was no way I could have done so. The year before retirement I was so overwhelmed trying to work with symptoms and lack of sleep that I asked to go down to a 3 day week (with a reduced salary) and as it happens this was only possible because of the recession. My pension is basic because I cannot supplement it. Some days I might be fit to do so but they are few and far between and I would not certain of being a reliable employee. I was very proud that during all of my working life I was reliable, hard working, and sought after though in the latter years it became more of a hardship.

I can only manage life on a day to day basis because I am retired. Friends are arranging a day out at a Spa followed by a fun evening. I shall go to the evening gathering. No way could I manage all day and I shall take my own transport so that I can go home when I wish. This makes me feel so much that I am now old.

My son who lives in west coast USA wants us to go over on a trip. the thought of a 9 hour flight is horrific. When the time comes I shall medicate medicate medicate.

Four years ago we went over for his wedding and I wept uncontrollably for much of the journey. At that time I had just begun rls/wed medication but did not know enough about it to successfully supplement it for such a flight. By the time I started medication my symptoms were 24/7 and included my arms.

For the return flight I had obtained codeine from various sources and made sure I took it before the flight. The flight was delayed, then we were boarded and afterwards returned to the terminal again because of the snow and ice. More codeine was taken.

By the time we eventually got into the air I was still dosing with the codeine as well as my usual ropinerole and managed the journey in a reasonable fashion, could barely stay awake and was obviously doped beyond what I should have been.

I am terrified of progression of this disease and being unable to fight my corner.

Well done Kimberley.
I'm sorry that you had the need to apply for Disability but very happy for you that it was awarded.

[badnights]

I wish more doctors knew your stories.

[veldon7]

Hi: I've tried to stop the jerks at church, I have to keep moving them, or get up, it's so frustrating, and embarrasing. Thank God that the medicine stops it!

[badnights]

It's a reflection of the general public's ignorance of the disease that we feel embarrassed in those situations. If we were in a wheelchair we wouldn't be embarrassed, because we would know that people understood that there was a medical issue. The problem with WED/RLS is there is no visual clue for other people to realize we're dealing with a medical issue.

If I have to stand up, and someone offers me a seat, I smile and say I can't sit down because I have a movement disorder. I guess we all live through it one way or another.

[Polar Bear]

If I am in a public place and need to stand up and move about, I do so.

In church I would go to the back of the church or into the foyer.

I have been at dinner with friends, 7 of us around a table, and I was the one standing doing leg stretches. My friends are used to me doing this sort of thing. At least the table was at the edge of the room and not in the centre.

It is frustrating to have to do this - but I don't feel embarrassed. Perhaps it has gotten to the point where I am beyond feeling embarrassed and if someone made a comment I think I would be pretty quick to provide a little unasked for information

[Betty/WV]

PB: I do the same things as you. Sometimes I can't sit through a 1 or 2 hour Christian meeting. I get up and walk to the rest room and if I am still having trouble I either stand in the back or go into the office and stand with my Bible and there is an inter com there so I can hear the talks.

I don't get embarrassed, I guess when we get older we don't get embarrassed as easy. And I don't hesitate anymore to explain what my problem is. I have been having more trouble lately with everything. WED, arthritis, fibro, depression. The last few years have been bad.

BETTY/WV

[Polar Bear]

Betty: 'more trouble with everything' !!
I'm with you on that - polymyalgia, wed, insomnia, getting tearful, gastric pain, and GCA (goes hand in hand with polymyalgia).

For some reason I am in a horrible circle at the minute and I wonder if my worsening insomnia is causing my rls/wed symtoms to worsen. The symptoms don't happen much during the night - its just insomnia then. But the evenings are having a bit more breakthrough even though I have taken 1.25mg requip and 100mg tramadol.

Fingers crossed it is only a blip. Is it the stress of coping with several conditions that is the cause of worsening breakthrough - I'm wondering. The thought of the WED getting more progressive or augmentation doesn't bear thinking about.

So as far as non sufferers are concerned.... I have enough on my plate without being concerned about what someone thinks about me being up and about.

Sorry..... don't mean to sidetrack this thread.