RLS: observations

[Guest guest]

Dear Group....

I've had some experiences with my RLS, lately, that made me want to write

them down and keep them, for my own records. I thought some of you might

want a peek at them, to see if some of it pertains to YOUR experience and

might give you insight to some things you are experiencing or might want to

try. I'm definitely NOT lecturing to the group or telling anyone else that

what I do will work for them. This is just about me.

This letter is going to be review of my RLS history and a report of a

recent GOOD turn-around with my RLS situation. There are no miracle cures

here....just a bad week turned around, and some observations about what

might have helped it turn around and what I might do next time.

A little recap in this saga. I've had RLS in my legs since I was 6. Around

20 years old, it started in my arms. I used to be able to GO to sleep, as

a way of stopping it. If I could just doze for 10 minutes, it would go

away. I never put together the simple stuff we know, now...that walking or

mental activity works best. I just spent years sitting in agony at movies

or lectures or on driving trips, and never realizing that getting up and

moving around would stop it. Duh! It was my private problem, so I sorta

dealt with it and tried to not complain. There was no use discussing it.

No one had a clue, except to call it growing pains or stress. At around

35, it started waking me and messing with my sleep. It also started

preventing me from getting to sleep. And at 45, last January, it started

causing pain during and after a strong attack. (By the way, I'm pretty

amazingly healthy, other than this...no other injuries or chronic ailments,

so I never have the problem of wondering which ailment I'm dealing with, or

whether a medication is affecting me.) That's when I found the RLS

Foundation site and learned there was a name for it. I started taking

supplements...basic vitamins and minerals, and the commonly recommended

calcium, magnesium, and folic acid. The pain went away and hasn't

returned. Of course, at that time, I also put many ideas together (which I

posted on my website http://www.netzone.com/~gunzel/rls.html)...one of

which is Zero Tolerance. I learned to NOT let an RLS attack get going

strongly...but to stop it, even if it meant walking continuously or staying

up all night paying bills. This, alone, might have been the reason I

haven't had pain from it. I can't say, for sure. Meanwhile, I've used

concentration, supplements, my favorite tea, and distractions like sucking

on suckers, as my main ways to battle RLS.

In October, I received information from someone about a product called

Neuromins. This is a vegetarian source of DHA. (Most DHA is fish oil and

has EPA with it...which might be a problem if you are also taking other

blood thinners.) The information I saw on the Neuromins convinced me it

was worth a try. I have that info, if anyone is interested. I've shared

it with several people in the group, and I'm pretty sure no one else has

found it useful. They might not be using the vegetarian source....they

might have other ailments, too...and most of them are using other meds for

their RLS. So...we have no way to know, yet...if DHA/Neuromins is a good

idea. BUT...for me...I pretty convinced it is. Possibly in a few months,

when I've experienced the " relief " a little longer, I might try going off

of it and see if the RLS comes back the way it used to be, before I took

the Neuromins. Within three days of starting it, my RLS became milder than

it's been in years, and VERY much more managable and less frequent. In

fact, I had two great months, where I still had some RLS, but it was like

having a little sneeze here and there, without catching the cold. No

problem. I think in the whole two months, I had two separate single night

incidents where I was up during the night with a panic form of RLS...just

an overall body craziness...legs and arms going, and me just feeling like I

wanted to run down the street. But those were isolated one night events.

Again...not terrible to deal with.

THEN...last week. BOY HOWDY!!!! It was the tail end of the Thanksgiving

weekend, and the RLS started Friday night, while I was trying to view a

photo album but couldn't sit still. Each night and day got

worse...interrupting sleep and daytime activites, until I was not getting

more than 2 hrs of sleep in a stretch. It was almost like I had the flu for

a week, except it was RLS. It came on STRONGLY and then slowly left, a

little more each day. Of course, DURING this time, I was getting more and

more organized and getting moving on my holiday " to-do " list. I KNOW that

makes a difference. The other big thing I did was that after about 7

nights of erratic sleep (usually not more than 2 hr stretches), I finally

just stayed up for most of a night, on purpose. I paid bills, answered the

backlog of emails, and organized my lists for how I was going to accomplish

things during the few weeks. Ever since that night, and getting only 2 hrs

of sleep from 4a.m. to 6a.m....I've been back to normal sleep patterns of

(10-6). It was as if I needed to totally mess up my body clock on purpose

and then get back to the normal routine. Otherwise, I felt like I was

fighting this preset thing that was trying to keep me up every two hours

all night.

The good news is, the RLS has continued to calm down. It's back to where I

might feel it now and then, but I can still sit there or get to sleep

easily. I'll NEVER complain about that. Last night, I had constant RLS

when I hit the bed..having to stretch out or move my leg every minute or

so...but I was still able to concentrate (worked over a clogging dance

routine in my head) and get right to sleep. I slept from 10:15 until 6a.m.

That's two nights in a row! Great, eh?

So, with all that in mind, here's my plan. Next time I have a strong bout

of RLS for more than one night in a row, I'm going to purposefully stay up

on the third night and see if I can stop it from going further. I do NOT

want to give up another week like last week. This plan of purposefully

staying awake, will accomplish a couple of objectives, 1) it will fight the

new cycle of waking every night at 2a.m. by keeping me up PAST that time,

2) it will make me feel as though I'M in control (a very important

thing...to NOT feel victimized by it), and 3) I'll be using that time to

accomplish things that just MIGHT be causing anxiety and therefore causing

RLS...like paying bills, cleaning, organizing my life, etc. At least I'll

be getting deeply involved in POSITIVE things, rather than waiting for one

more night of waking up and then being up all night with RLS.

Just a note here, about anxiety causing my RLS. I have anxiety all the

time..like everyone else. BUT, I've noticed, with me, that it's a certain

TYPE of anxiety that always accompanies my bad RLS attacks. It's NOT when

I'm busy and going 100mph. It's the anxiety that comes BEFORE I get busy.

It's when I know I have to GET busy and start figuring out how to get

everything done. Once I'm doing it all, I just wear myself out and sleep

pretty well. So...it really didn't surprise me that Thanksgiving weekend

was my worst time. THAT is the weekend when I usually start worrying about

how I'm going to get everything done for the upcoming holidays.

Back to the idea of staying up late and breaking the two-hr-at-a-stretch

sleep cycle. I'll give it a try and see if this works. You'll be the

first to know. One other main difference between my situation and other

people's, is that I don't need to report to work in the morning. I'm not

sure how it would change anything I've just discussed...but recently

decided I'm going to get sleep whenever it feels good. Like many people in

this group, and many people with RLS...I find that after 4a.m is often my

best sleep. The morning I stayed up all night, though, I just slept from

4-6a.m. On other bad nights, I'd been allowing myself to sleep in and

catch up on sleep by sleeping until 8 or 9a.m....my BEST hours. I'm not

sure if that's important at all...except that maybe sleeping late in the

morning was helping to strengthen that other weird schedule my body was

trying to adopt...getting up each night at 2 and 4a.m. Maybe by just

sleeping from 4-6 and then forcing myself to stay up until the next night,

I successfully broke the new cycle that was starting.

One more observation, from recent experiences. This last week's craziness

was so different than what I'd experienced for the last two months. And

now that it's over, I'm back to feeling like I did, before. Last night, I

was watching a movie on the couch. I felt the RLS start...but I was able

to stretch and walk ONCE, and then relax for the rest of the movie. Last

week...that wouldn't have worked. It really WAS like a week of the flu.

I'm not suggesting RLS is viral, or something we catch...but that when it

gets real bad all of a sudden, I think it might help me to concentrate on

it PASSING...rather than to worry myself that it's getting worse all the

time. It was a bad week....but in general, I'd say my RLS is no worse than

it ever was. In other words, I have to remind myself to not panic and feel

hopeless and victimized...because there's a good chance it's just a bad

week, a bad cycle, and this too shall pass.

And one last point....I'm finding there is a definite difference in the

kind of RLS attacks I get. Each type involves the same weird crawly

feeling (the one I describe as like a bottle brush being run up and down

inside my leg). But there are other things that differentiate the type of

RLS attack.

1. Sometimes, it's just that crawly feeling, and the need to move my legs,

and the inability to lay still. My muscles don't tighten, and I don't

panic. I can overpower these with concentration, music, or simple

distractions or a quick walk/stretch.

2. Sometimes, the crawly feeling also involves the muscles. When that

happens, it's vital to get up and stretch, or massage the area and stop the

muscles from tightening further. Sometimes I don't realize the muscles are

becoming involved, so I just take my time trying to concentrate or do

something to relax. NOT a good idea. Once the muscles tighten up...it

just gets worse and will end up painful. The only answer is to walk or

massage and/or stretch those muscles.

3. Sometimes, the crawly feeling is more of an overall body feeling,

involving legs, arms, head, and mind. I get the feeling I'm covered in a

spider web and just can't shake the sensation. It's definitely a feeling

of panic and craziness.

You've all heard me say that when an RLS attack hits I start at the top of

my list or " bag of tricks " and work through them all until one works

(repeating from the top if nothing works). Well, what I'm learning, is

that I have to start recognizing the TYPE of attack I'm experiencing, and

treat each one differently. I can overpower a crawly feeling with music or

concentration. I can NOT do that when it involves muscles. This would

mean that if I were traveling in an airplane or car, and I felt my muscles

getting involved, I should IMMEDIATELY stretch, walk, or start a strong

massage of those muscles. As for the full panic type...I haven't figured

those out, yet. I think the best thing for that is to get lost in

something, like a computer game, letter writing, dancing, piano playing,

etc. I surely can't just " talk " myself out of it.

Like I said, these are all personal observations of what I've been

experiencing. The more I learn of myself, the more I'm able to control my

reactions to my RLS. I hope some of these ideas help trigger your own

observations or what you're experiencing and help you react in ways that

help you, too.

Good luck,

Jill, 46

Payson, AZ

http://www.netzone.com/~gunzel/rls.html

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