Restless Legs Syndrome (RLS) Discussion Board

My good period ended a week or so ago. It pretty much lasted almost two months. That's pretty good for me. Last night I only got two hours, 6:30 am to about 8:30 am. Before that broken sleep of two hours and then five hours later, two more hours. My thigh pain is increasing and expanding into more of my muscles along with the jerks. For a long time it was located at the top of my thigh, now it has expanded to include the middle. My leg is now hurting from below my knee to above my hip, also causing my to limp. I don't think I have PLMs. I have this while I'm awake and asleep. I think it is something else. I don't know what. I hope this bad period doesn't last too long. I'm still just taking two Methadone.

Any ideas what it could be? Hope it stops soon.

deb
Is it just possible there could be some cramping going on? Sometimes my legs ache so much for no obvious reason and I've kind of put it down to this. Or alternatively to an element of my fibromyalgia.

Tbh - I just can't tell the source, i.e. fibro, arthritis or cramping...... or a parallel element of RLS (I don't think it's the RLS but who knows.)

On a good day a dose of Ibuprofen might ease the ache in the thighs and on another day I might as well throw the Brufen over my shoulder - which according to my doctor is the best place for it!!

That sounds miserable. Two months isn't long enough.
It sounds weird, especially the pain making you limp. Does it fade away during the day, at least?

It used to go away during the day, but now, I'm feeling some pain during the day. It's burning, like nerve pain, along with the jerks, spasms. No cramping. Maybe it's coming from my back? I don't know. It's worse today.
I did sleep last night. I took an extra Methadone, only because I had to babysit today. I don't like to take extra. The jerks started this morning while I was in their recliner, after I had put the baby to bed.
I also remembered last night that my Mother had leg pain after her stroke, when she was confined to bed. At that time they only gave her one oxicodone at bedtime and another around 4 am. The doctor even did a muscle biopsy while she was in the hospital. The results were inconclusive. I don't remember if her leg jerked.

Could the burning be neuropathy?

I don't know. All I know, is it causes my leg to jerk and keep me from sleeping. I'm thinking I'm going to have to add another drug of some kind.

Have been thinking of you as I read of your struggles. You inspired me to try aromatherapy oils which, even if they don't hugely help the legs, are rather a nice ritual in the evening. I really hope you find something that works to settle the pain in your legs. Two hours sleep is appalling and two months of respite does not seem enough. Do the legs respond to ibuprofen? I find this a simplistic but often useful diagnostic starting point. If an anti-inflammatory works it tends to rule some forms of pain out and others in.

Might as well try. I love the oils too.

Thats what I was wondering - if you have a painful neuropathy confounding the RLS. What was gabapentin like? Did you have these possible these pains when you were taking it?

Gabapentin didn't help, also put weight on me.

I was thinking last night, while awake in the middle of the night, that I don't know how long I will continue to fight this disease. I was thinking that if I stopped wearing my bipap mask, that would probably shorten my life span. I know what everyone else is going through and how bad it is for all of you. How do you keep going? I actually had a friend of mine tell me to snap out of it. I've been so tried lately, that I've stopped doing many things. She knows I don't sleep, yet expects me to function like normal all the time. Then the other friends start saying how they sometimes can't sleep, and they sound like it's the same kind of thing for me. They just don't get that after years of bad sleep it has taken a toll on me.

Oh the degrading things that friends casually say .... I have had the exact same statements. References to their own struggles with insomnia in a tone that clearly indicates that if they can manage with their problems, how can you not just shut up and get on with yours. It is a catch 22 situation also - futile to try and correct them - they can't really help it - they simply don't understand - and at the same time you feel you have to explain why you literally cannot function in a social setting.

I know how you feel about not wanting to go on. Have sometimes felt it myself. I imagine mamy with severe rls comes face to face with it at some stage. There is a certain freedom that comes when you have those thoughts. You no longer feel it is so important to keep struggling to achieve the lowest possible dose, wear the cpap, drag yourself out of bed when a respite is allowing rest just to seem a bit more normal. They all become less important.

There is no panacea but I found journaling 3 things I feel grateful for surprisingly helpful. Often I can't be bothered even to write them down but it somehow changes the perspective of even the darkest hour. If it's any use I found a short Ted Talks video by a guy called Shawn Achor kind of helpful (it's quite funny too).

I hope you feel a bit less bleak today.

Hugs, Deb. Wish I could deliver them in person.

I often think I am stupid - the definition of insanity as I keep trying again and again....it's probably just biology, says the jaded part of me. I was researching PhD programs tonight (again - I do this every few months). And soon, because it always happens, I will hit a rough patch, get no sleep and wonder why the heck I ever thought I could get through a PhD at this point, let alone work full time. But, I keep doing it. Maybe, just maybe, there will be a different outcome at some point, I suppose. Just hope I am not too old or my brain permanently damaged from the lack of sleep to have some semblance of life if it does.

stupid" "insanity" .... hmmmm.... a bit like the question
"What is the difference between 'bravery' and 'stupidity' and 'no choice' -

Ann - I would have no doubt that you would have the tenacity and determination to pursue a Ph.d successfully. One bonus being that they are generally not time limited. Those hours during a bad night could become so productive