A night to forget.

[PeteB]

Hi, I'm new to this forum. Although I've been a member a short while, I thought I would read the postings first before adding my own.

I've been 'living' with RLS on and off for about 10 years - before that it was so seldom that I don't count it.

Now, however - it's with me every night. And day. The creepy crawlies are driving me mad. Either sitting at a desk they start to invade my calfs.

Mid afternoon and still at work and not walking around, starts my appreciation of what the remainder of the day holds for me and then to be capped by the night.

Home from work and I busy myself about the house. Keep moving to stop the feelings rising from calfs to thighs. I know it's there though when I sit down for five minutes. Is it a creepy crawly or a slight electircal buzzy feeling? Take something to help me sleep? I know there's a downside to that. But anyway, I'm tired still from last night so I try to go to bed. Within ten minutes of reading a book my eyes are closing and my legs are waking up for their night of troubling me. I try to ignore the feelings and say to myself that if I go to sleep quickly, I might be able to immerse myself before they get a chance.

And then, just as I'm drifting off to sleep - I get what I call 'The Trips'. It's a feeling like I've just tripped over the top step of a flight of stairs. My heart leaps into my mouth and I'm awake again with butterflies in my stomach. And ants in my legs. And flies in my arms.

Now I spend two hours trying new positions. How about draping myself over the corner of the bed with my arms and legs hanging down? What about tucking my arms under the mattress where they have pressure on them?. I know!!!! Try going to sleep holding my hands in the air!!! No, I'll drape them over the edge. How about putting my feet up on pillows? No, it makes it worse. Should I go and eat something? Or drink something? Is there ANYTHING I can take for this? No.

Eventually I do go off to sleep - wondering if I'll get tripped up on the way. I don't get tripped up - but there's something else in store. Dreams of bad things. Dreams I know are dreams that I wake up from but really I only dreamt that I woke up and really I'm still dreaming but thinking I'm awake. So now I can't act in the dream as if it was a dream. But then I wake from the bad dream to find it was a dream and I can stop worrying and get myself back to sleep. Another trip? Another bad dream? No. Nothing until the morning.

And I wake with sleep paralysis. Why is my wife trying to strangle me? Why can't I tell her to stop. I want help but I can't ask for it. I think the cat is in the room and looking at me. But my cat is in the kitchen always. With a huge effort I gurgle out a sound and then lay panting and wondering what time it is. Is it time to get up again? I want to sleep now but I can't. I have to go to work. I'm tired. My legs are quiet. Ideal time to sleep. But work calls me.

I drag myself to the kitchen to make coffee. I need a lift. I need to find energy. I need to carry on. I keep doing it. So I'll carry on doing it.

[Sara]

Awww, Pete!

I'm one of the people who still sleep around here. RLS wakes me up now, because my worst RLS seems to be split between evening and morning now. But I have that advantage of not fighting sleep initially, even though I know what you mean about "now I want sleep but I have to go to work." When I get woken up early, it seems like IF I can fall back asleep, it's usually about 10-15 minutes before the alarm goes off, so it's ALMOST (but not quite! ) worse than no more sleep at all.

Others here may have more wisdom to share about your situation than I do, because they're at the same "stage" of RLS now, but I couldn't let your post pass without welcoming you to the group, and commenting on one thing you said that really struck me!!!!!

I've never heard anyone else talk about "tripping in their sleep" before, and although I no longer do that, I used to do it ALL THE TIME when I was young. I remember that CLEARLY as a kid, and then I had a series of recurrences in my late teens/early twenties. I remember the recurrence because several times I "tripped" the same "place".... into the metal grates they put around the trees in the sidewalk in downtown Los Angeles. You CAN'T trip on those or fall into them in any way, really. But because my mind set me there, I can place that set of "tripping" incidents after the time I lived there.

Anyway, I don't think I've "tripped" in a long time, but I know EXACTLY what you mean, I think!!!! I wonder now that you mention it, if it was because of an actual leg movement in my sleep that I didn't realize was happening? I always got that heart-in-my-throat feeling just as you described.

Wow! Wish you didn't have those, but thank you for mentioning them. I wonder if anyone else here has had that???

Hang in there. I know you're having an awful time. But at least folks here do really understand, and will help with suggestions and such if they can.

Sara

[sardsy75]

I drag myself to the kitchen to make coffee. I need a lift. I need to find energy. I need to carry on. I keep doing it. So I'll carry on doing it.

Uhh Pete ... I hate to break this to you, but your coffee "habit" may be what's making your RLS worse.

Caffeine, in ALL forms (including chocolate) is a stimulant and is one of the main triggers of RLS.

If you are a Coffee Coniseur then I am sorry to have to break this to you, but you're going to have to start cutting back ... big time!

Stress is another major contributor to RLS, and you are stressing out big time. May I suggust that you try something relaxing, such as TaiChi or Massage. Even a spa bath, or if you don't have a spa, just a long soak in a bath with some Epsom Salts can do wonders.

Keep us posted on your journey Pete. We are all here for you!

Take it one step at a time, one day at a time and most importantly, Stay Positive!

Take care of you!

[jumpyowl]

Welcome among us!

Have you been or are you a writer? That post was written by someone having a special gift in expressing himself or herself! Nice job!

I assume that you have not been to a doctor, or have you? If not, you are probably not taking any medication. If so, you just may have to start doing that because clearly you cannot keep doing that grind mill routine. It will grind you down, eventually, no matter how tough you are!

You caught the cofee Nadia, I missed it. According to the survey so far, only a bit more than half finds the coffee as an exacerbating factor.

We should start to distinguish between decaffeinated and virgin coffee.

Let us know how and what are happening to you on your journey!

[alecto3]

I am also fairly new and have not seena doctor for this yet so I will tell you what helps me sleep. I get on my hands and knees and do leg lifts, first to the back and then to the side with my foot flat as if I were standing. I do those until my legs are numb after the pain of doing the exercise, then comes numbness. Next I sit up and rotate my arm at the shoulder, 10 back 10 front until they too go numb. Then I try to sleep if I still cant I repeat the process. Usually after 2 or 3 times I can sleep. Someone said something about caffine, this is true, I find the more caffine I drink the more trouble I have. Also if you take anti-depressants that can effect it too as alot of them have dopamin and that is a trigger and lastly DO NOT take OTC sleep aids it makes it worse (atleast with me) I tried that for about 2 weeks and that was the worst it has ever been for me. The exercise is really the only thing that has helped me so far it exhausts the muscles and the rest of your body. I hope I have helped you. Good luck!

[PeteB]

Thank you, all, for your considerate, helpful and kind replies. I hovered a long time over the 'Submit' key before sending my post. I feel now that I needn't have hovered so long.

To answer a few points raised; I read a while ago about caffeine (in it's various forms) being a trigger and/or causative factor. I only have two cups of coffee in the morning. No more coffee throughout the day. I stopped drinking Coke a long time ago. That left chocolate. Probably the hardest to give up. I'm not convinced that chocolate is affecting me. I'm in the middle of a 'trial' at present to see if it has an affect.

With regard to medication and seeing a doctor. The medications which I am on which might have any bearing on the condition are Seroquel/Quetiapine & Epilim/sodium valproate. (to help with anxiety/sleep (!!!) and epilepsy petit mal)

I have seen a doctor about the rls, and she said that she will need to go away and do some work to find out what the latest is on rls.

She recently upped the Seroquel as it's sedative effects may help with the rls (at the expense of feeling hit by a sledge hammer the next day).

From the above posts, I've also noted how important other forms of help are. Indeed, massaging the legs and arms does help. Actually, I discovered this once when my wife offered to massage my legs to help. I was able to fall asleep so easily and well. I then felt awful that I had found a 'solution' that I could not use. I can't ask my wife to help out like this every night. I then thought about getting some of those pads which people use for toning up and and seeing if that works. However, how would I switch it off???!!!!

Warm bath/Epsom salts - nice idea and a possibility that I can weave in to my evening routine.

Over the past few months, as the rls has promoted itself to a greater position within my life, I've had to make some pretty acute adjustments too. The evenings are the preparation times for battle, and it's things like watching what I eat and drink that are so important, but also the general structure of the evening. Even as early as 7pm, time to stop eating, wind down the day bit by bit - either reading a suitable book, listening to calming music or watching a soothing programme on TV. There's no such thing as going out to see friends etc as that can really upset the routine. Also, as we have a 5 month old baby, we're staying in most evenings. No alcohol. I've been told that whilst it may appear to help, alcohol causes a bad nights sleep. (Can it be worse?).

Trouble is, by 9pm I'm really pretty sleepy. By 10pm I'm dragging myself around the house. Do I need to compound that with a warm bath?

I'll give it a try. Anything for a decent nights sleep.

Thanks all for your so helpful hints and ideas and caring messages.

Pete
Ps. I'm not a writer. I'm 43, married to a lovely lovely lady who bore me a lovely lovely son whom we adore. I'm a technical consultant in IT and she's an Accountant when she's not home. We live near Windsor in England.

[sardsy75]

Hi Pete

Welcome back

My hubby is also in IT (analyst/programmer) and I am a Financial Accountant by training although I now work as a Bookkeeper from home. As you've probably seen from my info at the left of this post, I'm from the underside of this here planet.

In case you haven't found it yet, below is a link to the thread "Useful Websites" which is hiding somewhere in this topic:

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=94

Take a gander at it; particularly at the 2004 Medical Bulletin. Your doctor sounds like the type who is willing to learn so she may benefit greatly from a read of this article (it's in .pdf format).

If you are particularly looking for ways to combat your RLS without having to increase the drugs you are on, then I highly recommened Jill Gunzel's RLS Rebel site at www.rlsrebel.com - plenty of ideas there!

Also, have a wander through the Non-Pharmaceutical Therapies Topic. You will find all sorts of weird and wonderfull tips and ideas to try out.

I realise that you have a 5 month old baby and that means responsibilities, BUT, you need your sleep. If you are sleepy at 9pm take advantage of it, go to bed and sleep, even if it is for only a few hours. Who knows, maybe your wife might thank you for being able to take the "graveyard" shift with bub.

BTW, try keeping a diary of your daily activities - what you eat, drink, when you sleep, how long you sleep, when your legs "kick in", what drugs you take, the dosage and what time they're taken etc etc. It sounds tedious, but it does help show up any patterns that aren't immediately obvious from day to day.

Keep us posted on your journey Pete. We all know what you are going through and are here for you any time day or nite.

Take care of you!