Unrefreshing sleep: RLS+PLMs or depression?

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tba
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Unrefreshing sleep: RLS+PLMs or depression?

Postby tba » Mon Oct 05, 2015 10:37 pm

Is my daytime sleepiness caused by RLS+PLMs or depression?
I've been diagnosed with both, but no treatment has helped (besides stimulants).

Background
I've always had nocturnal thigh pain (RLS?) which is relieved by movement.
I was diagnosed with painful RLS, but Ropinirole and Pramipexole did nothing.
Fortunately I'm able to fall asleep if I follow a strange ritual of running several miles before bed.

However, starting 18 months ago, my sleep has become unrefreshing.
I wake up feeling exhausted and have trouble keeping my eyes open for at least 50% of the day.

Evidence for/against RLS+PLMs
(+) My sleep study found 29.5 limb movements per hour, though only 1.0/hr resulted in arousal. No other abnormality was found.
(+) My iron is in the low-normal range at 23ng/mL.
(+) I've been diagnosed with painful RLS.
(+) My leg pain prevents me from sitting for a long period of time -- I haven't watched a movie in years.
(-) Ropinirole and low doses of pramipexole did not help my thigh pain.
(-) Although I have trouble keeping my eyes open, I do not spontaneously fall asleep -- I have an ESS score of 0.
(-) My RLS does not affect my ability to sleep as long as I run every night.
(-) I experience the leg pain all day, though it gets worse at night.
(-) My demographics (23m) are not typical of RLS.

Attempted treatments for RLS/PLMs
1) Modafinil (Nuvigil) makes me feel much more awake. But I'm building tolerance and I fear it's only covering up the true problem.
2) Ropinirole and Pramipexole did not help my thigh pain or daytime sleepiness.
3) Klonopin helped my thigh pain, but not my daytime sleepiness.
4) Gabapentin cures my thigh pain, but does nothing for daytime sleepiness.

Evidence for/against depression
(+) I have suicidal thoughts several times per week.
(+) A couple times I've used self-harm to stop my leg pain.
(+) Depression can cause concentration problems and fatigue.
(+) I often feel too tired to leave my house.
(-) I have no morning insomnia (the most common cause of sleep deprivation in depressed individuals).
(-) I exercise vigorously (1+ hour per day) and go out with friends (~5x/week).
(-) I have a normal healthy appetite.
(-) I have not lost interest in any hobbies.
(-) I do not feel abnormally sad.
(-) I have no feelings of guilt or worthlessness.

Attempted treatments for depression
1) Paxil made me feel much more tired.
2) Paxil + wellbutrin was no better than Paxil alone.
3) Prozac had no effect.
4) I couldn't tolerate Lexapro due to dizziness.
5) Two CBT therapists were unable to help me -- they did not think my thought process was particularly warped.
6) I've noticed no benefit from 1 month of daily mindfulness meditation.

Sorry for the wall of text -- I'm writing this partly to collect my own thoughts.

ViewsAskew
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby ViewsAskew » Tue Oct 06, 2015 3:37 am

Tough case. here are some random thoughts - no idea if they will help or not.

Are you taking gabapentin now? It is associated with depression, specifically suicidal ideation.

I always feel ignorant when it comes to painful RLS. Mine isn't - it's the creepy crawly kind. I can't imagine how hard it must be to figure that out - when walking and moving relieves several kinds of pain. Given that the dopaminergic drugs didn't help, I'd definitely wonder if there could be a different cause for the pain. But no ideas to help.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby Rustsmith » Tue Oct 06, 2015 8:58 am

In addition to what Views said and asked, what was the gabapentin dose that you used and when were you taking it? When I was at 300 to 600 mg, the gabapentin did nothing for my sleep. When my doctor increased that to 1200mg a half hour before bedtime, it made me drowsy enough to fall asleep "normally" and put me into a deep sleep that was refreshing enough to allow me to get by with three to four hours on most days.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sleepdancer2
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby sleepdancer2 » Tue Oct 06, 2015 9:51 am

I'm impressed that you are able to gather your thoughts so orderly. I'm one who does better with lists too - helps me focus my thoughts. One hard thing about all this is separating the symptoms when there is so much overlap. With my experiences these last 15+ years I've learned to not underestimate the consequences of poor sleep. Most of my experience is with PLMD. I've read that any sleep deprivation (insufficient quantity OR poor quality) can cause one to have a heightened sensitivity to pain. It takes the right proportion of sleep stages for the body to recover nightly from the day's use. Add limb movements to the mix and you have tissues that are almost never at rest, and just keep accumulating the stresses. By the time I finally got things under control, my legs were incredibly pained to where walking was miserable and climbing steps was next to impossible. For what it's worth, In the absence of a successful experience with medications, I have treated my PLMD with a TENS Unit for about 4 years. It doesn't work for everyone, but may be worth a try. I want to encourage you that some people DO in time find what works for them. The problem with meds for depression is that some are said to worsen RLS symptoms, but again, everyone's experience is different. That said, your safety is priority. If you feel you are in danger, please continue to urge your doctors to keep seeking solutions. One question to ask your doctor when trying meds is whether they will stop the leg movements or make you sleep through them. There's an obvious preferred choice. Good luck with all this. I remember those days and nights, and I'm grateful to be on the other side - at least for now.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

tba
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby tba » Wed Oct 07, 2015 11:04 pm

Thanks for all your replies!

@ViewsAskew: Fortunately I don't think gabapentin caused any depression.
I began taking it only ~4 months ago, and haven't noticed any increase in daytime sleepiness or suicidal thoughts.

@Rustsmith: Great advice! I took 300mg and 600mg, but will ask my doctor about increasing the dose.

@sleepdancer2: Thanks for sharing your experience. How were you diagnosed with PLMD?
Did you have a high ESS score?
If you've had a polysomnography, do you recall the PLM index and arousal index?

Finally, did the TENS unit help immediately?
If so, I may try to find one.

Meanwhile, I plan to start Wellbutrin, since it treats depression and seems to help PLMD.
I hope my sleepiness is caused by PLMs, but meta-studies like this leave me somewhat skeptical.

ViewsAskew
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby ViewsAskew » Thu Oct 08, 2015 4:22 am

PLMs are a troublesome issue. Many people have them and are not bothered at all. I think the only way to know is to have a sleep study. I can't remember my score (it was high). In my studies, I had almost no stage 3 and 4 and minimal 5. This is when your body learns and repairs itself - without these, you don't remember well, learn new things, feel refreshed, or even heal well. Before I went to see the sleep doc, I was keeping track - I was aware of being awake at least 30 times a night (I kept a tick sheet by the bed).

I just think of it this way. A sleep cycle is 90 minutes. When you interrupt it, you don't get to stages 3, 4, or 5 (or enough of them). So, if you are aware you are awake? It's likely an issue! And, even if you are not aware, it could be, meta-studies be darned, lol.

Now, why some of us are not aroused by the movement is truly fascinating. My husband has them - his sleep studies show almost no arousal from them.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sleepdancer2
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby sleepdancer2 » Sat Oct 10, 2015 9:38 am

I've been at this since 1998 when I was first diagnosed with PLMD during a sleep study. I've had several of them as I had to sort through also having sleep apnea. My movements on the studies have been all over the place just due to differences in whether the sleep apnea was treated or how well the meds for my legs were working. I think the most I saw on a report was nearly 400 in a night during a time of augmentation. The arousals varied too - from maybe 1/3 of them causing arousals to most of them causing arousals. I'd look it up but my records are packed away right now. My biggest watch-out on determining severity of limb movements in a sleep study is if sleep apnea is present also. If both OSA and PLMD show up on a sleep study, my first suspicion is that both disorders are actually more severe than the study could determine. That's a long explanation, but if it happens to apply to anyone I could elaborate. Otherwise, I won't bore folks. :D
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

badnights
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby badnights » Tue Oct 13, 2015 7:41 am

tba, you have mentioned that you're very sleepy during the day, but what happens at night? Do you find yourself becoming alert at around the time you should be going to bed?

I have no advice, unfortunately, but a hallmark of WED/RLS for some of us is a backwarding (new word) of normal circadian sleepiness. I use modafinil to combat excessive daytime sleepiness - I wouldn't stay asleep, but I would easily fall asleep over and over without it - and I haven't developed tolerance, thankfully, over the two years or so I've been taking it. I don't take enough to make myself never sleepy; that is, I still have problems with sleepiness, but without the modafinil it's intolerable.

I also take zopiclone at night, to have any hope of sleeping, and even so I can't sleep before 2 or 3 AM earliest. I'm not sure how much of the backwardness is the alerting effect of opioid medication that I take for WED/RLS, and how much is due to the perversity of the disorder itself.

I have to wonder if you really have painful RLS/WED. I think it's worth asking a few more questions to try to nail that down. I will try to find an excellent article I have somewhere on that.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

tba
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby tba » Tue Nov 03, 2015 2:36 am

@sleepdancer2 Thanks for the data! Fortunately I have no apnea.

@badnights Yes, I do feel most alert at night!
I take modafinil (300mg) in the morning and a very small dose of melatonin in the evening.
The modafinil helps a lot with sleepiness, but my circadian rhythm refuses to shift.

Has a lightbox helped? (I'm considering one, though I live in California.)
Do you have any studies regarding RLS and circadian rhythm?

Let me know when you find the article on painful RLS vs other disorders.
It's possible my pain is neuropathic or psychosomatic.
I've experienced it (burning pain in both thighs) for about 10 years.
In the past, I managed it quite well by going for a vigorous run immediately before bed.
The run was mandatory for my sleep quality -- even on vacations and Christmas Eve.
(Conventional wisdom recommends avoiding exercise late at night, but my body is clearly different.)

My fatigue started after a knee injury prevented me from running.
Clearly the nighttime run was covering up some problem -- but was it psychiatric or neurological?

tba
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby tba » Tue Dec 01, 2015 1:19 am

Update: I found the cause of my pain.
It's not RLS, it's neurogenic claudication due to lumbar spinal stenosis.
My unrefreshing sleep is possibly secondary PLMD caused by spinal injury.

This surprised me, since I have almost no pain in my lower back (the pain is exclusively in my legs).
But I've tweaked my lower back while weightlifting several times, and apparently I did some damage.

MRI report: http://i.imgur.com/yrbBgUo.png .

ViewsAskew
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby ViewsAskew » Wed Dec 02, 2015 5:40 am

Thanks for much for reporting back. So glad you figured it out - and I hope there is a treatment for it.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Icnflms
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby Icnflms » Wed Jan 20, 2016 4:35 pm

Hi Tba,

I hope you don't mind me contacting you, I have read some of your posts and am really sorry to read that you have suffered badly with RLS & PLMs, and in particular that at times you've resorted to self-harm.

I am currently putting together a documentary about Restless Legs Syndrome for broadcast in the UK. We are looking for RLS sufferers to share their story and in doing so help lift the lid on the so-called 'invisible illness'. RLS is often ignored in the UK and we are hoping with this documentary we can raise awareness and understanding. Here is a link to our company website and RLS documentary advert:

http://www.iconfilms.co.uk/whats-going-on.html

If you would like to be involved please do get in contact - I would really like to be able to set up a phone call between you and our Researcher, Laura so you can talk about your experiences as an RLS sufferer, and coping mechanisms you have.

Thanks for your time.
Best wishes,

Ariane
Icon Films
rls@iconfilms.co.uk

badnights
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Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby badnights » Sun Jan 24, 2016 6:52 am

Hi Ariane
You might want to reconsider your request, since tba found that his/her problem is not RLS/WED, but is caused instead an inflammation of spinal nerves. Neuropathies are often difficult to distinguish from WED/RLS without careful questioning about symptoms.
Cheers
Beth
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Icnflms
Posts: 15
Joined: Thu Jan 14, 2016 3:09 pm

Re: Unrefreshing sleep: RLS+PLMs or depression?

Postby Icnflms » Mon Jan 25, 2016 2:41 pm

Hi Beth,

I've just seen this - sorry for not replying earlier. Thanks for the information, that's very useful.

I've actually read quite a number of your posts and wondered whether you would be interested in speaking to us? I'm not sure what you know about us though you might have seen our post in the announcements on this forum. I work for a production company in the UK called Icon Films that has been making factual content for television for 25 years. We are making a documentary about RLS/WED that aims to uncover the science so far behind the condition and, crucially, learn what life is like for affected people.

As I said, I've read some of your posts, and something that jumped out at me was some of the lengths you've gone to in order to cope with RLS, for example by raising your office area (computer etc) so you could stand behind it instead of sit... We're really interested in speaking to people and finding out about their methods of coping with/alleviating their symptoms (outside of taking medication). We are sincerely hoping that the documentary will make a good contribution to raising awareness of this condition in the UK - as at the moment it's very under-researched and practically unheard of by those who themselves aren't sufferers.

Would you be willing to chat to us about your experiences of living with RLS? If you're interested, please email rls@iconfilms.co.uk.
You can take a look at our advert for the programme on our company website and the other types of documentaries we make.
Thanks for your time and if we don't hear from you I wish you all the best with coping with your RLS. http://www.iconfilms.co.uk/whats-going- ... m-rls.html

Best wishes,

Ariane


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