Woah I'd never heard of PLMD. I've had insomnia for years but maybe there's a little more to it. The symptoms on wikipedia all sound like me except I don't think I have involuntary movements as often as 20-40 seconds so chances are I don't have it. The symptoms are scarily close though! I definitely have little jerks/spasms and sometimes accidentally hit my boyfriend or scare him by shouting out. :/
PLMD must be hard to diagnose, I imagine it's frustrating trying to get a doctor to take it seriously. How long have you had it?
You are totally right, I didn't realise we'd spam the person ^_^;
Often people don't even realise they have PLMD. If you've had insomnia for PLMD, I'd try for a sleep study. Especially since I see you're in the UK, so it will be on the NHS if you get a doc to refer you. the sleep study should show up any issues, if you've had insomnia for a long time I'm actually surprised you haven't been referred before. The little spasms definitely sound like PLMD, so I'd mention it to the doc.
It is frustrating as my doctor had never even heard of it, but diagnosis is pretty simple because the sleep study (which admittedly is a hellish experience for those who already struggle to sleep, but it;s one night) catches it right away.
In my case, my legs were actually waking me up and started any time I lay down too (almost like RLS, which is unusual and indicates the overall cause could be something different), but I often wake up with the feeling of them kicking. Mine is quite severe and initially seemed to happen when I was put on a certain med for (extremely mild) diabetes. Once I came off the med it never went away, so no idea of it was just bad timing. It's been about 2 years now, but I have a lot of other symptoms so right now we're trying to figure out if the PLMD has a cause, or if it's just random (both are possible).
I've had insomnia for 10 years and my doc never mentioned anything. :( He gave me zopiclone to take every once in a while but won't give me any more in case I get addicted, despite me making the 7 he gave me last months. I'll ask him about a sleep study though! I can imagine me not being able to sleep at all though and wasting their time. :P
Ah that sounds awful. Has the doc gave you anything for it at least?
That is a definite risk with a sleep study. Lemme just say, that during mine I thought it would be impossible and I ended up leaving two hours early, but I did manage to sleep two hours. They hook you up to a crapton of wires and stuff so if you usually sleep with your bra off (If you're a femme) or in a certain outfit, make sure you're in it. I thought I'd have a chance to take off my pajama pants and bra later (and sleep just in a nightie), but there's so many wires I couldn't. Nightmare. The sleep test is very stressful, but definitely worth it, because if there is an underlying issue, you can get treatment and really turn it around. I know how it feels to be running on empty a lot and that it becomes 'normal', but when I think back to my life before I got sick, it's definitely not normal.
Right now I'm on Tridural and it worked for a week and then stopped. Normally they don't like to give you opiates and I was reluctant to start them (given the press and worry, but I've never had addictive tendencies or problems with other 'addictive' prescriptions), but I had a friend who had huge success with Tridural and basically my doctor tried everything else prior to this. Hopefully will find some relief soon, so basically keeping my fingers crossed that I up my dose and it doesn't 'adjust' and stop working again. The week that it worked was a mammoth difference for me. I half reupholstered a chair, it was just like how I used to feel without feeling 'high' or 'weird' like I expected with opiates. No side effects either.
I'm pretty medication resistant, but I also get side effects at the most unexpected time, so it's a crapshoot. For example, trying harmless 'pot' as an option, left me a wreck. Yet the opiates don't seem to cause problems at all thus far. Go figure. :P
Ah I wish there was some more portable version of the sleep study equipment I could use at home! Especially since my sleep is so all over the place, some nights are fairly normal but most of the time I struggle getting to sleep, staying asleep or both. I've got a fitness watch (fitbit) which tracks my sleep but my doc wasn't interested in seeing how messed up it is.
Oh no they made you sleep in your bra! You would think they would make sure you're comfortable before they got you all wired up. Well I'll keep that in mind!
I looked up Tridural - I know it as Tramodol and woah it did not mix well with me. I had just had morphine in hospital following surgery and they gave me that to take home but it made feel like a spaced out zombie. Goes to show how different people are! Does it work by sedating you enough to prevent the PLMD so you get more sleep? I hope your new dose works for you and you get your energy back! <3
Heh, pot doesn't do me any good either. Makes me more fatigued body-wise but wide awake with my mind racing so sleep isn't an option. I've heard about different strains being better for sleep/energy (indica vs sativa) since they have different effects but who knows what strain was in it. And I don't have the contacts to experiment, lol.
There is a portable version for sleep apnea testing, but considering your symptoms I imagine they'd want to do a full spectrum one, which usually requires staying at a clinic for a night. I feel you, when my PLMD first got bad I was lucky to sleep an hour or two a night.
It probably depends on what employee you get and how their bedside manner is, haha. I imagine she just didn't think it was a big issue, but well...if you're at a sleep clinic, you probably struggle to sleep, so comfort is king!
Yup, everybody is totally different. Tridural is like a special type of Tramadol I think. I was really nervous, but didn't suffer any bad side effects so far. It wasn't even like it sedated me (anything that sedates me tends to make my leg go off even worse), it just seemed to stop my leg from kicking as much and I slept through the night (though it wasn't perfect, by any means another reason I suspect a higher dose is needed). But my energy level difference was massive. My calves weren't all tight and sore from kicking all night anymore and I had so much more energy. Just like it used to be. Not like buzzy or hyper, just...not sick. So I'm really hoping a higher dose fixes it again. I get nervous about having to go higher and then having to come off it in case there are bad withdrawal effects. Some people have hell with that, but again it really depends on the person.
Now that it's legalised in Canada, it's still heavily regulated, but it's a proper clinic person you need. In the UK, I know that's not the case, so yeah it's definitely difficult to even try as a treatment option without a safe, medically guided environment!
Hi Wonderwhatif!
Woah I'd never heard of PLMD. I've had insomnia for years but maybe there's a little more to it. The symptoms on wikipedia all sound like me except I don't think I have involuntary movements as often as 20-40 seconds so chances are I don't have it. The symptoms are scarily close though! I definitely have little jerks/spasms and sometimes accidentally hit my boyfriend or scare him by shouting out. :/
PLMD must be hard to diagnose, I imagine it's frustrating trying to get a doctor to take it seriously. How long have you had it?
Comment has been collapsed.
You are totally right, I didn't realise we'd spam the person ^_^;
Often people don't even realise they have PLMD. If you've had insomnia for PLMD, I'd try for a sleep study. Especially since I see you're in the UK, so it will be on the NHS if you get a doc to refer you. the sleep study should show up any issues, if you've had insomnia for a long time I'm actually surprised you haven't been referred before. The little spasms definitely sound like PLMD, so I'd mention it to the doc.
It is frustrating as my doctor had never even heard of it, but diagnosis is pretty simple because the sleep study (which admittedly is a hellish experience for those who already struggle to sleep, but it;s one night) catches it right away.
In my case, my legs were actually waking me up and started any time I lay down too (almost like RLS, which is unusual and indicates the overall cause could be something different), but I often wake up with the feeling of them kicking. Mine is quite severe and initially seemed to happen when I was put on a certain med for (extremely mild) diabetes. Once I came off the med it never went away, so no idea of it was just bad timing. It's been about 2 years now, but I have a lot of other symptoms so right now we're trying to figure out if the PLMD has a cause, or if it's just random (both are possible).
Comment has been collapsed.
I've had insomnia for 10 years and my doc never mentioned anything. :( He gave me zopiclone to take every once in a while but won't give me any more in case I get addicted, despite me making the 7 he gave me last months. I'll ask him about a sleep study though! I can imagine me not being able to sleep at all though and wasting their time. :P
Ah that sounds awful. Has the doc gave you anything for it at least?
Comment has been collapsed.
That is a definite risk with a sleep study. Lemme just say, that during mine I thought it would be impossible and I ended up leaving two hours early, but I did manage to sleep two hours. They hook you up to a crapton of wires and stuff so if you usually sleep with your bra off (If you're a femme) or in a certain outfit, make sure you're in it. I thought I'd have a chance to take off my pajama pants and bra later (and sleep just in a nightie), but there's so many wires I couldn't. Nightmare. The sleep test is very stressful, but definitely worth it, because if there is an underlying issue, you can get treatment and really turn it around. I know how it feels to be running on empty a lot and that it becomes 'normal', but when I think back to my life before I got sick, it's definitely not normal.
Right now I'm on Tridural and it worked for a week and then stopped. Normally they don't like to give you opiates and I was reluctant to start them (given the press and worry, but I've never had addictive tendencies or problems with other 'addictive' prescriptions), but I had a friend who had huge success with Tridural and basically my doctor tried everything else prior to this. Hopefully will find some relief soon, so basically keeping my fingers crossed that I up my dose and it doesn't 'adjust' and stop working again. The week that it worked was a mammoth difference for me. I half reupholstered a chair, it was just like how I used to feel without feeling 'high' or 'weird' like I expected with opiates. No side effects either.
I'm pretty medication resistant, but I also get side effects at the most unexpected time, so it's a crapshoot. For example, trying harmless 'pot' as an option, left me a wreck. Yet the opiates don't seem to cause problems at all thus far. Go figure. :P
Comment has been collapsed.
Ah I wish there was some more portable version of the sleep study equipment I could use at home! Especially since my sleep is so all over the place, some nights are fairly normal but most of the time I struggle getting to sleep, staying asleep or both. I've got a fitness watch (fitbit) which tracks my sleep but my doc wasn't interested in seeing how messed up it is.
Oh no they made you sleep in your bra! You would think they would make sure you're comfortable before they got you all wired up. Well I'll keep that in mind!
I looked up Tridural - I know it as Tramodol and woah it did not mix well with me. I had just had morphine in hospital following surgery and they gave me that to take home but it made feel like a spaced out zombie. Goes to show how different people are! Does it work by sedating you enough to prevent the PLMD so you get more sleep? I hope your new dose works for you and you get your energy back! <3
Heh, pot doesn't do me any good either. Makes me more fatigued body-wise but wide awake with my mind racing so sleep isn't an option. I've heard about different strains being better for sleep/energy (indica vs sativa) since they have different effects but who knows what strain was in it. And I don't have the contacts to experiment, lol.
Comment has been collapsed.
There is a portable version for sleep apnea testing, but considering your symptoms I imagine they'd want to do a full spectrum one, which usually requires staying at a clinic for a night. I feel you, when my PLMD first got bad I was lucky to sleep an hour or two a night.
It probably depends on what employee you get and how their bedside manner is, haha. I imagine she just didn't think it was a big issue, but well...if you're at a sleep clinic, you probably struggle to sleep, so comfort is king!
Yup, everybody is totally different. Tridural is like a special type of Tramadol I think. I was really nervous, but didn't suffer any bad side effects so far. It wasn't even like it sedated me (anything that sedates me tends to make my leg go off even worse), it just seemed to stop my leg from kicking as much and I slept through the night (though it wasn't perfect, by any means another reason I suspect a higher dose is needed). But my energy level difference was massive. My calves weren't all tight and sore from kicking all night anymore and I had so much more energy. Just like it used to be. Not like buzzy or hyper, just...not sick. So I'm really hoping a higher dose fixes it again. I get nervous about having to go higher and then having to come off it in case there are bad withdrawal effects. Some people have hell with that, but again it really depends on the person.
Now that it's legalised in Canada, it's still heavily regulated, but it's a proper clinic person you need. In the UK, I know that's not the case, so yeah it's definitely difficult to even try as a treatment option without a safe, medically guided environment!
Comment has been collapsed.
This comment was deleted 6 years ago.
Comment has been collapsed.