Restless Leg Syndrome (RLS)

[Zhaylin]

I should have been a detective.  I love finding links to problems and solutions and whittling away theories to replace them with better ones.
I was never satisfied with "here, have some medicine for that headache."  Yeah, I'll happily take meds when needed, but more than anything (even immediate relief), I need to understand why the problem exists in the first place 

ANYHOW... I was diagnosed with RLS back in the early 2000's.  I've taken Gabapentin for it for many, many years.  But I'm still not satisfied with all aspects of the diagnosis.  Or, perhaps, 2 conditions are co-existing.
Mostly, though, I'm unhappy because of the way my discomfort presents.  It's a very dull, constant and sometimes throbbing ache that is VERY SIMILAR to the way a tooth aches.  I don't have tingles or numbness or the skin-crawling sensation the majority of people complain about.

The "pain" begins about a hands length above my knees and seems to effect the front of my thighs more than the backs.... then the pain radiates (at times) to my hips and (rarely) my buttocks.
If I HAVE to sit like a normal person, I bounce my legs.
Being still makes it worse.  When I'm awake, I tend to sit on my right foot and have my left knee beneath my chin or bent to the side.  I can sit like this for hours (in fact, I believe this habit is largely WHY I have a bum right knee- which hurts when I lay flat and when I push off while walking).
It's worst when trying to sleep, but mostly because I simply notice it more.  While awake, I keep myself distracted with video games, shows, crafts... I can usually crowd out the discomfort.  I don't have that luxury before or during sleep. 

I have seen Dr's for this.  I've had X-rays.  In these parts, Dr's are too fast to dole out scripts and don't ask nearly enough questions (if you even actually see a DR, usually it's just the PA- whom I have come to appreciate because they actually speak with you... but their knowledge is more limited than a Dr's).

These last few days have been especially rough.  The discomfort is making me cranky and because the pain NEVER friggin leaves, my perception of it becomes exaggerated which makes it feel worse than it actually (probably    ) is.

I started using my TENS unit on my worse leg (left) and it seems to help for a few hours.

Does anyone else have RLS?  Does it feel like this to you?  Have you learned any tips or tricks for dealing with it?

[Beej]

There are some articles on RLS, aka Willis–Ekbom Disorder, on Medscape, a medical news aggregator site with separate sections on conditions and drugs. That site is free and requires registration. WebMD is a companion site, written for a non-medical audience.

You might find it useful to search and to read artcles about this on Medscape if you've learned medical terminology or are willing to look up unfamiliar words. I've found the site very helpful.

[mckevin32]

Have had very occasional RLS, (maybe an issue once a month or so), forever, but at that level it was never worth doing anything about.
4 years ago I had both knees replaced and, for reasons no one seems able to answer, as soon as I got off my pain meds RLS hit HARD. Every single evening/night I sat up with vibrators or TENS leads on each thigh. At its worst I was literally beating closed fist on my thighs. I found that sometimes a hot shower helped, if that failed, well, hydrocodone and vodka...
Fortunately before I became a hopelessly drug addicted alcoholic I found my current pulmonologist, who is treating my RLS and sleep apnea. He says that RLS is frequently associated with low free iron in the blood (different than a standard iron test), and along with iron supplement as needed I find mine to be extremely well controlled with a small dose (10mg) of methadone every evening.

[Zhaylin]

Thank you both for the replies <3
I will browse Medscape some more. I've used it in the past, if memory serves. I have no problem looking up terms I don't know lol... but if the info is too "dry" or technical, I can't seem to process it.

*hug* Kevin. That's sounds excruciatingly miserable! I'm glad you found someone to help as well as suitable treatment.
I see my sleep Dr on Tuesday, so I'm definitely going to try to talk to him about it.

[DaveL]

I'm interested. I was diagnosed when they confirmed OSA about 25+ years ago.

I'm waiting for results of my recent sleep study. See if RLS is confirmed. Here's to sleep comfort and good rest to us all.

[Mosquitobait]

My primary said that RLS is multifactorial and NONE of the medications are specific for RLS. They are sideshoots of other medical problems where they noticed that hey, this person has feewer RLS symptoms.

I have had RLS for about 4-5 years. No pain, just tingles that drive me bananas and wake me up because I NEED to move my legs. This is complicated by neuropathy caused by a medication and diabetes doesn't help that. So, any solution that might help me, probably isn't going to work for you because I think we have different cause. It's very clear that it's an inherited condition in my family, although it mostly skipped a generation (one cousin has it, but several of great-aunts and uncles did as well).

I am able to significantly calm my RLS if my legs are cool. So, I put socks on and leave the blankets off my legs. My sisters, on the other hand, got more relief from keeping their legs WARM. Strangely, none of my brothers developed RLS. FWIW, I couldn't take gabapentin for very long. I couldn't get past the drowsiness and I'm both a caregiver and sole driver, so that wasn't an option.

[Zhaylin]

I hope your results are promising, Dave!  I'll take that good rest and comfort and wish the same for you <3

Mosquitobait, Sorry Gaba(pentin) didn't work for you.  I take 400 mg Gaba every day.  The sedation was miserable at first.  So I take 100 mg in the morning and the rest at bed time.  I'm the sole driver of my household too.  I always grumble that the med doesn't seem to do anything... until I miss a dose    Then I appreciate what it does do lol.

I finally figured out, some time ago, that the reason I sit like I do is because it seems to TIGHTEN the muscles of my thighs.  Having them relaxed triggers the pain for me.  Bouncing helps, but not nearly enough.  Being cold definitely makes my pain worse.  I still sleep with one foot sticking out from under the covers though 

I was prescribed 50mg Trazodone for my insomnia (by my psychiatrist).  I started with 25mg though.  It didn't do anything, so last night I took the entire 50mg.  My goodness, my dreams were INTENSE!!  I hope I acclimate to it quickly.  I managed to get 7 hours of sleep, but it was absolutely miserable sleep.  I kept waking up and sitting up and falling asleep while sitting, lol... then I wake up, lay down, and fall back to sleep.  I was stuck in that cycle all night.

Oh yeah... what is FWIW?

[Zhaylin]

I truly... (??) not quite DISLIKE, but... I guess I'm just truly FRUSTRATED, to no end, with our local Dr's. I have to give mine credit though. He IS trying and our relationship has vastly improved... but I still leave appointments with a dozen questions and feel unsatisfied overall.
The appointment with my Sleep Dr. wasn't quite as rushed as usual. I told him my RLS confuses me to NO end, because it is nothing like what I read about. I summed up my post here and he said "Yeah. That's definitely not RSL" He actually had equipment there and tested the nerves in my legs and says everything looks okay. Then he prescribed EMLA and said it should help... and that was it. Bah!
The search continues lol

[yrnkrn]

Could be referred pain from your spine or SI joint. Imaging tests even MRI would not necessarily show anything.
With similar symptoms, the first exercise here helped me a lot.

[Zhaylin]

YrnKrn, a million thanks for that video!  It was exceptionally easy to follow.  Easier than my current, in person, PT workers lol.

I was a bit rushed when I finished my last post.  I'm a long standing member of another site, then I updated my FB, and by the time I posted here it was an abbreviated explanation of that last Dr. visit.
What you said, was more or less what he hypothesized.

To make matters worse, however, I'm an addle-brained idiot about certain things   and I did not help my cause with the Dr at all.

He ASKED if I had back or hip problems.  I told him, "not really, I mean I do, but it mostly revolves around my monthly cycle"

Ummm, only sort of/not really. *bangs head on nearest wall*

Back in c January 2001, I had such a debilitating backache, my hubby was so concerned that he ordered an MRI.  We were to be taking our yearly trip to Hawaii for his Accreditation classes.  It was equally stressful (maybe moreso initially) than enjoyable.  It was also close to my period.
Thus began the start of a very long search.  Endometriosis?  Nope. yadda yadda.... then I started seeing a psychiatrist [p-doc].  After a few months, I noticed my back pain went away for *the most part*.
It was "all in my head then."  'Nope'- my p-doc sort of explained.

Over the years, different meds stopped working (Prozac, to Celexa, to something else somewhere along the line, to Cymbalta)
Throughout the years I went from being under weight at 104 pounds to being over weight at 153... now I've evened out at slightly over weight (5'5") at 145.  And somewhere throughout that time, I just.stopped.moving.

So, I've forgotten that backache until my recent trip out of State (Friday-today) reminded me of it 

ANYHOW... despite my weight gain, my recent broken shoulder and surgery for it, my (in general) sedentary nature... the exercises in the shared video would be nothing (much  ) for me.
I have Ehlers-Danlos Disease type 3 (hyper-mobility).  But just because I CAN do something with relative ease, doesn't mean I actually DO them 

It's given me a line of questioning to explore and exercises to DO.

Now... how do I explain all this to my Dr when I talk to him next... seeing how I get, maybe, 5 minutes of his time every 3-6 months (if that).  Even though I readily accept and embrace my addled brain, for the most part, that doesn't mean I want my Dr's to think I'm a bumbling idiot....