Video of RLS/PLMD

[Joolsg]

Just came across this on Instagram. How many thousands of people have this and are totally unaware they're getting terrible quality sleep?

Fascinating.

instagram.com/reel/DAHhPEeS...

[Huntingleroy]

Poor thing , she must be exhausted

[Joolsg in reply to Huntingleroy]

And her poor partner. I just hope she gets help & finds a doctor who won't ruin her life by prescribing a DA!

[HipHop1972]

Hello Joolsg thanks for posting that little tit bit. As you say fascinating, yes, but equally horrifying. We have all been there and I know the video has been speeded up but it brings the reality of RLS to life and anyone who sees it would want to help the sufferer. The medical profession should be made sit down in front of screen and watch the nightmare 😱

Kind regards HipHop1972

[Joolsg in reply to HipHop1972]

Absolutely. They have no idea of the nightly torture.

[Kakally]

yep… that’s exactly like me for about 5 years up until 2020 ……. It was like that virtually every night and sometimes continued into the daytime

Thankfully I’m sooooo much better now since my iron infusions as necessary and my buprenorphine patches (changed twice weekly).

Only very occasionally do I have a spell like that these days , and I just get up and stamp around the house until it settles . People really need to see this video ……😔😔😔😔😔

[Rayme]

It makes me so sad to watch her battle, it is a torturous condition. I take methadone and last few nights had more persistant breakthroughs. So exhausting to deal with as we get older because you just don't want to or have the energy to get up...again, so the RL will continue if you don't get up for a bit. Phew!!!

[Joolsg in reply to Rayme]

I suspect she doesn't even know what she has! And how many others are there in the same position?Hopefully someone will pass on the comments and she'll get her blood tests, start iron & if that doesn't work, start pregabalin/gabapentin or opioids.

And hopefully your RLS will settle or respond to a slight upwards dose adjustment.

[Rayme in reply to Joolsg]

thank you Joolsg, all these words of advice and support you give are so very much appreciated.

[Kejimkujik]

My neurologist referred me for a sleep study due to the level of fatigue and exhaustion I was experiencing. During the REM stage of sleep which is I believe the most critical stage for restorative rest, I exhibited RLS. I was not aware when the RLS kicked in, just know I woke during the night with some RLS. It did pass off and I was able to get back to sleep but the neurologist did state that it was disturbing my sleep. She actually suggested trying a little increase in my Buprenorphine to see if that would get the RLS under control during my sleep periods. I suspect this video is what they saw during the sleep study. I have added a sliver more bruprenorphine and now trying to track fatigue and exhaustion levels during the day.

[Joolsg in reply to Kejimkujik]

That is interesting. I split my Buprenorphine dose and now take 0.2mg at 9 and 0.2mg as late as possible ( just before I'm ready to drop off). That's because I was waking up around 4 30/5 with RLS. I'm sure a sleep study would have shown similar leg flailing!I now sleep through until 9 or even 10am.

I hope adding slightly more Buprenorphine covers you through the night.

[Delilah162]

My husband video'd me one night for a few minutes and showed it to my neurologist. He was shocked and said no wonder you ache so much because your running a marathon all night.

[Joolsg in reply to Delilah162]

If only more neurologists watched the videos and read the stories on here. They might bother to learn more about this serious disease.

[Delilah162 in reply to Joolsg]

That’s very true Joolsg. I’m glad my husband did it now albeit a tad embarrassing 🙈

[fritzb43 in reply to Joolsg]

The fact is, unless a neurologist is a movement disorder specialist, the odds are they have no clue about how to treat RLS. Ask them BEFORE you go to see them.

[Joolsg in reply to fritzb43]

Yes. However, the most knowledgeable doctor in the UK is Dr Jose Thomas, a sleep specialist who quickly realised most of his 'sleep' patients had RLS. He also realised UK guidance was outdated so went to the USA to learn from the experts, like Dr Buchfuhrer and Berkowski.

[SueJohnson in reply to Delilah162]

🤣🤣My laugh for the day "your running a marathon all night"🤣🤣🤣

[Delilah162 in reply to SueJohnson]

🤣🤣🤣 you'd laugh even more Sue if you saw me because I'm definitely not a marathon runner 🏃‍♀️. That's my other half's hobbie

[Merny5]

It is horrifying to watch and most of us have been there OR are still there😢

[Joolsg in reply to Merny5]

Yes- the reason I ended up sleeping apart from my husband. I woke him up constantly and then when I tried to settle, I couldn't because I was conscious I'd wake him again!

[Summer220]

This has actually been my life. I do have some nights where I sleep great, but most are interrupted because of RLS.

[fritzb43]

On the one hand, Mg definitely helps my RLS, no question.

On the other hand, Instagram, YouTube, etc are the LAST places to look for credible medical advice. Or any other advice, for that matter.

[Joolsg in reply to fritzb43]

Unless it's a top expert , like Dr Berkowski or Dr Winkelman. Their YouTube videos are very helpful.

[Theonlypetied]

soooooo stressful watching this as this is me…apart from I don’t look that good in my jammies!

[Joolsg in reply to Theonlypetied]

LOL.She's verra young!