Is RLS / PLMS really the cause of all my problems ?

[DesperateDann]

I hope everyone is well and that the responses to my post are helpful to others as well as for myself. Apologies for the long post and the long list of questions

Before having ever taken any medication my symptoms are constant significant fatigue, memory loss, cognitive decline. My vision is significantly affected, difficult to describe how, maybe poor visual perception but it's worse in the mornings. I have had many eye examinations and no problem found so maybe my brain has a problem making sense of what my eyes are seeing. Falling asleep is very difficult and takes hours - often awake all night. When I do manage to sleep, I feel like I have a massive hangover in the morning. I was completely unaware of any RLS or PLMS. To confuse things even more, I have Sleep Apnea but it is controlled well with a CPAP machine which I have used consistently every night for years. After yet another sleep study, I was diagnosed with severe RLS

The first medication I took was Morphine (at night only) which caused me nightly violent all body jerking (even the soles of my feet !!!) which would wake me often, severe RLS during the day and night. My legs were so tired I had to crawl up / down stairs. All my other symptoms such as fatigue, poor vision etc remained strong

I have taken Gabapentin (at night only). I would get some minor RLS before bed which would resolve with Gabapentin and was aware of some minor limb movements in my arms and legs (which would wake me up slightly during sleep). Gabapentin helped me fall asleep quicker to an extent but all my other symptoms such as fatigue, poor vision etc remained strong

Currently, I am on Gabapentin and Ropinirole (at night only). I can fall and stay asleep fairly well. I get some minor RLS before bed but all my other symptoms such as fatigue, poor vision and memory etc remain strong

Now for the questions -

Is it possible to have severe RLS / PLMS and just not be aware of it? I had no physical symptoms (that I was aware of) before medication but became well aware of it once I was taking Morphine

Does this sound like augmentation ? I thought that only happened with dopamine agonists and not on opiates / opioids ?

Most of what I have read on forums etc suggest the overwhelming symptoms of RLS / PLMS are pain / uncomfortable sensations and this is what has a serious impact on quality of life. My symptoms are zombification, fatigue, memory, cognitive, vision problems etc and this is what is having a serious impact on my quality of life. Does this ring a bell for anyone ?

[Hidden]

Hello!

I can answer one of those. Regarding whether you can have PLMS without knowing it, yes you can. I was very surprised when I got a dual diagnosis of sleep apnea and PLMS when only the apnea was expected.

RLS and PLMS are similar, yet different, disorders. PLMS consists of unconscious movements and is diagnosed by polysomnography, RLS of conscious movements and diagnosed by verbal history of symptoms/family genetics/etc.

All but the vision problems ring a huge bell.

[Madlegs1]

As Jesse says, you may not be aware of PLMD, but you will most certainly be aware of rls.

It utterly consumes your life, especially in the evenings and trying to sleep. You simply are unable to rest, because of the uncontrollable URGE to move your legs.

All your symptoms simply do not add up to rls, in my experience.

Your sleep apnea would certainly contribute to many of your symptoms.

I'm interested to know by just what criteria you were diagnosed for rls, and by whom??

I would also beg to say that much of what is said to be rls on various fora, actually is neuropathy or the start of other conditions.

However, the treatment for many of these is similar-- alpha 2ligands- Gabapentin and Pregabalin, and opiates.

So, to a certain extent, it doesn't matter very much.

Except to ould Bollo##s like me!🤣

[DesperateDann]

Thanks for the replies Jess3648 and Madlegs1 !!!

I was diagnosed by the NHS. I found that the various doctors seemed to use the term RLS early on but this morphed to PLMS and that's because I have been telling the doctors that my whole body can go wild during sleep

I'm not sure what scale or criteria was used but the doctor who intially broke the news to me advised I was running a marathan in my sleep and that the measurement scale they use is from 0-30 with 30 being severe. My score was well over 100

Went up to 2mg Ropinirole last night and my arms were flailing all over the place. My stomach decided it wanted in on the action as well - worst night for movement in a while. I've been taking vitamin D and B12 tablets the last few days as well. Hopefully things will get better over the next few days

[Joolsg in reply to DesperateDann]

Careful on the Ropinirole dose. 2mg is high and you should be careful of Augmentation. It's extremely rare to have violent body movements as a side effect of Morphine but it would appear morphine did not agree with you.

I think you have PLMD but not RLS. As Madlegs says above, RLS is the uncontrollable urge to move accompanied by creepy crawly sensations deep in the legs. The PLMD would definitely result in daytime fatigue and accompanying memory loss due to lack of proper sleep.

Perhaps you could try pregabalin instead of the gabapentin- it's better absorbed & has fewer side effects. Gabapentin and pregabalin can cause fatigue but side effects tend to settle after a few months. Also, maybe consider another opioid like oxycontin as you may not have the rare side effect of all over body movements.

[Hidden in reply to DesperateDann]

you're welcome

If your doctor diagnosed your limb movements from your polysomnography results, then it is PLMD. Here is a link explaining the difference between the two disorders:

alaskasleep.com/blog/bid/28....

That aside though, I think that the treatments are the same since they are similar disorders.

I'm sorry you have this since it is awful to wake up and not feel refreshed!

[DesperateDann]

Thanks for the responses all !!! The information etc is really helpful. 2mg of Ropinirole hasn't really helped me more than the 1mg I was on (so far anyway). Still feel horrendous as usual. I'll give it a bit longer but I guess it's not worth staying on 2mg for too long. Yes, you guys are right. I do have RLS but not really to the point that it causes me any significant problems. The PLMD is crazy for me. Hip thrusts were waking me up last night !!! I just don't know why I reacted so badly to Morphine. My doc was suprised as well. Maybe I'm just a weirdo but I'd be much happier if I was a well rested weirdo