Twitchy legs and the brain

[twitchycardifflegs]

Tried backwards alphabet and complicated multiplication tables, legs dont seem so bad when I divert the brain to other things. Currently taking Pregabalin, only 3 years ago did I manage to get my GP to acknowledge that maybe this was a physical condition. I should take 1 tablet morning and evening but I tend to keep both tablets for the night. Also taking Citalapram cant say if this helps as I was prescribed this for depression. My legs get so painful at night that even standing up whilst playing games on Kindle cannot stop the pain, and it is pain. Result I only sleep little and late at night, which impacts on my job. Also taken meds mentioned on this site, anyone with any other offers of treatment. This is taking over my life again.

[Hidden]

Do you wait until symptoms start to take your Pregabalin?

How long does it take to start settling the legs down?

I feel like a "mom" by saying this.. playing games on the Kindle is a good pass time

but it stimulates your brain.. the light on that game is confusing your brain to think

that it's time to wake up, time to get things rolling. Any bright light will getcha going.

I just read an article that said by 7pm the lights in the house need to be turned

down..we are putting our bodies in sleep mode by shutting that down. Sounds

need to soothe you, not stimulate you...

[twitchycardifflegs in reply to Hidden]

thanks for being so kind to share this info with me. I take 1 tablet before any pain, it seems that if I think I'm getting away with it for a night that it starts up. Then I take the second tablet if the first hasnt worked. Thanks for sharing this info with me. I will give it a go, in fact I'll give anything a go. Has this helped you?

[Hidden in reply to twitchycardifflegs]

I give good advice that I never take. =D.

I have been told by at least 2 doctors that

the computer, TV is not good for me... stimulation.

You would think that reading a book, (not a kindle) and

that light, the storyline would stimulate me but that's

not true. I fall asleep reading whenever my RLS leaves

me alone.

For me, I would take the one pill immediately after dinner

and then I would take the other right before bed. I would

want to be sure that RLS doesn't rear it's ugly head..

once it comes on, it's very hard to make it go away.

I do take my Pramipexole that way. My Rheumy told

me that it would be more effective.

[Hidden]

The anti-depressant is most likely making things worse, can you change to a more friendly RLS anti-d..??

When i didnt sleep at night, i USED to go on my laptop to play games, this did result in me being wide awake.

Now i just make a cup of tea and pace abit, then try to go back to bed. I also use music for distraction, i

live on my own so i have the radio on, but i did use to use my CD player with earplugs, for me i played the ballads, all lovey dovey music and LOUD, seem to block the RLS out.

[twitchycardifflegs in reply to Hidden]

I can stop the anti depressant altogether cos I don't think that its doing anything for me at all. I do have music on whilst playing on the Kindle and sometimes I put the tele on and watch anything until I fall alsleep. I will try LOUD and get myself some headphones, music is best played loud anyway, I think.

[Hidden in reply to twitchycardifflegs]

It's so so so so so dangerous to stop taking prescription

medications without the advice of the doctor..some

doctors get quite angry if you pull yourself off.

It's just too hard on your body to quit those or to cut back

on those without some help or instruction on how to do that.

Not many of those pills can be cut in half.. Most of them

are 24 hours worth of medication.. (not all, but most) ..

A couple people on this forum cannot do life without anti- D's

and if you were like me, you wouldn't like yourself much

without the use of them.

Remember twitchycardifflegs, that anti depressants take

up to 6 full months to get 100% of the benefit. The dosage

builds up in the system slowly and the doses usually get

switched around at appointments so that's why I say it's

longer than the usual 8 weeks minimum...Please give it

a chance..to work. ! You are so worth the try.!!! 8 weeks!

If you decide not to do the anti-d's then there are herbs that

can help you lift your mood but those are not always

suitable with the other medicines that you use. Proceed with

extreme caution.. Keep your doctor on board and FORCE

yourself to do one thing a day that you don't really want to do.

It's one foot in front of the other...bring the body and the

mind will follow..

[cicek in reply to Hidden]

Good advice Yikes! I was on anti-depressants for years (didn't stop the RLS) but have now successfully managed to come off them. I have ups and downs but have learnt hope to cope now. Of course the RLS at it's worse makes us all depressed!!

[Hidden]

Dont just stop the anti depressant, you need to wean off it. You may think its not doing anything, but if you just stop it, it could cause problems, see your doctor before doing anything. If you really need an anti depressant then ask your doctor to try a different one, there are some posts on here about people using anti depressants.

Because i play my music loud it might not work loud for you, you have to experiment, see what works for you.

[Hidden in reply to Hidden]

You're understanding the unpleasantness of suddenly stopping

the anti d's... It's true what Elisse says.. the same is for Pramipexole

and other dopamine drugs. You are going to have to have some

help quitting it. With the dopamine drugs cause a rebound RLS

that is unbelievable..I experienced it last month. My Neuro said

that she prescribes other medicines to bridge me over from dependent

to drug free with those kinds of drugs. Take care. Keep talking to us.

[Hidden]

twitchycardifflegs - backward alphabet, multiplication tables? wow..

You really need to start that dating site for RLS'ers.. haha.

You need to address that kind of pain with the doctor. If pain is keeping

you awake, that's too much pain.. it might be time to add a narcotic

if you have exhausted all over the counter stuff. If the doctor refuses you

the pain medicine.. kick him..and tell him that those kinds of things happen

randomly when people upset you. haha. Just joking. but seriously- get that

pain in check. Beg for a narcotic.

[cicek]

I can only tell you what I am taking that so far is the only thing that has really helped and that is Requip XL (slow release). I am on the full dose of 4mg as the standard Roprinorole did not work. As everyone else says, it's all trial and error for each individual. I spent night after night walking the floors until sometimes 6.00 a.m. reading, playing on my iPad etc etc. Had this syndrome for many years and over the past two years it got progressively worse. Nothing helped to take the symptoms away. Not being able to sit down with RLS when you are so tired causes depression in itself. Keep reading on here - there are lots of helpful people who know exactly how you are feeling and are ready to cheer you on. Good luck x

[AnnieClaxton]

I have to tell you all that I've just sat here (after another miserable sleepless night) and read this and cried .. with relief I guess, to know that other people know exactly how it feels to struggle with RLS. I only recently realised that it has a name and found this community so only now getting around to joining in. You all sound so kind and supportive of each other, it must be a huge help.

Other people are of course sympathetic and offer all kinds of well-meaning advice, but they can't possibly understand unless they've experienced it.

Twitchycardifflegs I hope things will ease for you soon - I hadn't had any serious pain due to RLS until recently - just exhaustion from lack of sleep and muscle aches from hours of continual muscle-clenching both at night and at my desk during the day, but ...

Yesterday was my second day back at work after a bout of excruciating pain on one side of my back and down that leg, which I'm fairly convinced is related to the RLS. My husband picked me up from work and by the time I came to get out of the car I was in horrible pain again. It's really getting me down now and of course so difficult to function properly at work.

My RLS started when I was pregnant 30 years ago and it seems to have become worse since menopause - do other people find that?

Anyway, I'm about to phone the docs and see if I can get an appointment today as it's my day off - I will feel more confident having read all your comments here so thanks everyone and wish me luck! :o)xxx

[Jumpey in reply to AnnieClaxton]

Hi AnnieClaxton,

Just wanted to let you know that my RLS started when I was pregnant 23 years ago. It also became very severe with the onset of the menapause.I guess this is fairly common for women with this condition.

[AnnieClaxton in reply to Jumpey]

Hi Jumpey, thanks for letting me know - well I have an appointment in half an hour, so watch this space!

[Hidden in reply to AnnieClaxton]

Hello Annie, I'm sorry that you cried. = /. You are correct

that we lift each other up and that you have to have RLS in

order to understand it. I am sorry that pain is getting the best

of you right now.

I'm glad to know that you are taking the first really big step and you

will find out from the doctor what's going on. Please keep in

touch about how your appointment goes. I am wishing for good

things at that appointment.

[AnnieClaxton in reply to Hidden]

Hello Yikes, thanks so much for the words of encouragement, it really means a lot to me.

Didn't go too well at docs - he's given me a form to fill in and bring back next week, assures me he's not ignoring the RLS but says this is part of the process. The form is all about symptoms of depression and anxiety.

He's not keen on starting meds at this point because I am already on several drugs for high BP. He said he may ask a colleague about it if it's still a problem in a couple of weeks. (!!!!!!?????!!!)

He says he's not too worried about investigating the pain as I had full range of movement when he examined me. If it is still a problem in 2-3 weeks he will consider further investigations such as scans. Trouble is, at the point when I saw him this morning, it was ok - the bad times are the middle of the night, early mornings, any time when I have to sit or stand for any length of time.

Now I feel like he thinks I'm either deluded or making it all up and I'm not looking forward to telling my poor husband either - he gets so upset when he sees me in discomfort bless him, I'm worried he will insist on coming with me next time, but then maybe I should let him ....

I'm so sorry to waffle on - it's just such a relief to talk to people who totally understand - thanks for the sympathetic virtual ears :o)xxx

[Hidden in reply to AnnieClaxton]

I have high BP as well. I take 2 blood pressure pills. This all started when I went almost a week with only minutes of sleep here and there. The sugars went up about then.. I've been on a form of Paxil for a long time as well- Paxil is life changing for me and helpful in ridding myself of anxiety...but the paxil aggravates my RLS. I'm changing that to organic paxil. It's supposed to have fewer side effects.

Pramipexole works to calm my legs down. I hope that your doctor decides to have you give it a trial.. It didn't work immediately. It took a good week for it to work for me. Others

on this forum had restful legs on the first night of that medicine. Still there are some that have zero relief..

Your husband sounds very loving towards your comfort. If the doctor hears it from him then you might have a better chance

that the doctor will hurry this up a little and prescribe relief.

Stress can make RLS worse but it's probably not the cause.

At the very least, you should get a trial of pain meds and/or dopamine pills, and if nothing else, a good sleeping pill.

Not to rain on your parade, a few of us had MRI's, scans and the results were normal... we are anything but normal without sleep! RLS tends to keep us up when we want to sleep so much.

Keep talking to us-

[AnnieClaxton in reply to Hidden]

Hello again, thanks for the advice - when I go back next week I think I may take my husband with me and push for at least something to help me (and the other half) to get a good night's sleep!

[Hidden in reply to AnnieClaxton]

Sometimes you do have to be direct with what you want. Knowing a specific medicine by name helps the doctor to make a spot on decision. Ask for at least a trial of the medicine. I am glad that your husband is there with you to talk to the doctor. =)

[funnyfennel]

Other than meds, I leave the radio on low all night on 4Xtra which has comedy , drama etc, not upsetting news...I think winding down helps to relax, if you have also done some excercise...I try to walk every day but not just before bed and stretching hamstrings and tiptoe excercises seem to help. Tried a zoplicone with pramipexole and was up all night...better without I think, Also find a good meal eaten early helps...I do take one paracetamol at bedtime as well...am not saying all these things are a solution, but they have helped me.

.

[Hidden in reply to funnyfennel]

Tip toe exercises help me as well. It's the most effective when

I can't walk. A good meal is essential for good sleep later. I

couldn't agree more. What is the paracetamol? Is that a narcotic?

[funnyfennel in reply to Hidden]

You must be in USA? I am in England and paracetamol is v.common painkiller (not asprin) Its tynelnol in usa) think it stops twinging pains and my itching dermatitis...we buy it at chemists, very cheap....as usual do not overdose...pleased you agreed with my ideas...

[Hidden in reply to funnyfennel]

You have great ideas for coping. Always. Oh yes,

it is just like our Tylenol. It's cheap, works okish.

[thedragon]

To everyone I havent spoken to yet.....HELLO!!!!!

Annie, Have you thought that the pain on one side of your back and down your leg COULD be sciatica? Ive had it for years since being pregnant with my second boy and having to sit in a car for 3 hours with a big tummy! He is 23 now!!! my physio gave me excercises to do after about 18 years trying all sorts! chiro didnt work and cost me a bomb!! If I do the excercises , its no problem.

I only take co codamol for the RLS. It usually works a treat! I take 2 when the symptoms start and it goes within an hour usually.

DIhydrocodeine worked well when my sciatica was bad, but not sure how this would fit with other meds!

[AnnieClaxton in reply to thedragon]

Hi there, hello back and thank you for replying to me!

I thought that too, but "they" think it isn't sciatica because the focus of the back pain is higher, in the thoracic area not lumbar - although I have tried to point out that I have had ongoing lower back pain for years, so maybe it's sciatica AND something else. And maybe the RLS is totally unrelated - all I know is that the area where the new and more intense pain is feels like the same area as the muscles that I can't stop clenching when the RLS is bad .. if that makes sense?

This is a new doc and it was him who first suggested that he may be able to help the RLS - it came up when I went to him with this new back pain (RLS hadn't caused me serious pain before, just muscle aches due to the continual clenching and of course lack of sleep) - and he said he may be able to prescribe something. I think he was hoping it would be due to anaemia, but bloods were ok. Also he didn't realise at that point that I was on other meds for my BP.

Trouble is that neither RLS nor back pain show do they? I feel like he thinks I'm making things up. I don't know why he gave me a form about anxiety and depression. The questions on the form he gave me are things like do I ever "feel so restless I can't keep still", "do I feel like I'm a failure?", "do I feel I'd be better off dead?", "do I become easily annoyed or irritable?" YES when i haven't slept all night because of RLS

Oh dear, I'm waffling on again!

Thanks so much for the suggestions - I have self-referred for physio (a new idea at the hospital I work for) so I'm hoping they will guide me with some exercises. It's interesting that you find Co-Codamol works for your RLS - I had noticed that whilst I've had this acute pain I haven't had the RLS so badly, but could it be because I've been taking Co-Codamol ....? But the doc told me to stop taking it now so I guess I'll find out if the RLS is back with a vengeance tonight!

Thanks so much again - so glad I found this forum :o)

[Hidden in reply to AnnieClaxton]

Keep telling the doctor..its for lack of sleep. Sometimes if the

medicine that you are taking is not making a difference in how

you sleep, feel, the doctor will tell you to stop with it. All medicines

are hard on our organs... so it makes sense that he told you to

quit with it.

I think that pain and RLS needs to get addressed before the

anxiety. A person in the very best of health cannot function

when they have no sleep...their emotions get out of control.

Make a deal with the doctor to give you a couple good nights

of sleep before you get answering those questions. They

will be far more accurate once your body gets what it needs.

The sleeping pills might work, narcotics will almost definitely

work to get sleep for several hours.

I am not a medical professional...I am telling you how I would

handle your situation. I would have my husband with me to

back up what I am saying is true.

I'm glad that you found us too. Good luck and keep in touch.

[Hidden in reply to thedragon]

sciatica is awfull, its got me going right now grrrr

[123098]

lavender oil bath soap shower jell worked for me

[exhaustedfox]

I find the Neupro patch works for me. It releases its medication over the 24 hour period. I was taking ropinirole at night but all it was doing was making me sleepy. I still woke up feeling like death. From time to time the fibro fog descends and that makes my job as an auditor extremely difficult to do, but on the whole I am better with the patch than without, except of course for the comments "I didn't know you were a smoker".... which of course I have never been!

[Hidden in reply to exhaustedfox]

Oh funny that they associate the patch with smoking..haha. I guess I didn't think of it but with all of the advertisement, I suppose they would. =)

Thanks for sharing a funny thing.

[ColoradoLover66 in reply to exhaustedfox]

Dear Exhausted Fox, I would love to ask you about the Neupro Patch. It is a bit late for me now, but stay tuned and I would love to continue this line of conversation tomorrow. Thank you.

[twitchycardifflegs]

Thanks for all your comments, brilliant to discuss this irritating and painful ailment. I first saw reference to RLS in a magazine and took this to my GP. I am still on the Pregabilin as I found the Rop... mad e me feel very sick. My doc has told me that the cause of RLS is pain to the nerve endings and taking a drug to act on the nerve is the solution. Works sometimes but I am now finding that I get the twitchy legs in the evening again which I thought I had seen the back of some years ago.