Gransnet forums

Health

RLS 3rd really bad night of no/little sleep. I'm pacing in the garage in the wee hours.

(61 Posts)
Coolgran65 Wed 21-Oct-15 05:03:11

I suffer from severe RLS 24/7 and medication helps most of the time. But not always. Meds include a sleeping pill.
Tonight is the third night in a row where meds have not done their job.
As soon as I went to bed I could feel it.....first a twitch or two creeping and crawling to let me know my 'friend' was here with me. Within one minute, it had built up so I had to get up and walk, the only solution for temporary relief. By 2.30am I'd walked for 90 minutes and it calmed enough for me to try going to bed again. So as not to disturb my DH I went to the guest bedroom, where I thrashed and shuffled, and eventually got to sleep about 3.30am.

It's now 4.30 am and RLS woke me again this time in left leg and left arm. I'm now in the garage, walking up and down and trying not to disturb DH as happens at some point every night ...or day..despite meds. il. Exhaustion is now rampant. I'm needing sleep and leaning on the garage wall with eyes shut and walking on the spot but I'm wasting my time. Must walk properly again. My eyes are shut from weariness and I'm staggering. Bouncing off the doorframe, another pill taken but it takes 90 minutes to take effect. I'd I'm lucky I'll eventually get a couple of hours at about 6am. That's if my fibro will also settle down.

Some folks would reckon that RLS is a mere irritation. Those folks don't have a clue what it's like.
Sheer torture.

I could tear my hair out. It's now been 30+ years of torture.

Aglassofroseplease Wed 18-Nov-15 14:19:21

Coolgran RLS drives me mad, it's the bane of my life. I've had it on and off for years and, like you I can be pacing the house half the night. I find that it helps if I try doing exercises and things that stretch my leg muscles - one is to stand about 12 inches away from a wall and lean my body into the wall keeping my feet away from the wall and planted on the floor - you'll feel your muscles being stretched, I do this about 10 times or more.
I'm on a sleeping tablet zopocline at present for a different reason - stress with my elderly mum having a hospital spell etc. It seems to be helping me get an good nights sleep without the RLS. I've read that it can be caused by a deficiency of magnesium and iron so I take Magnesium pills - the spray didn't help much. Good luck trying to find something to help with it. I could cry in frustration with it sometimes

bluekarma Thu 19-Nov-15 12:19:24

Coolgran I can definitely sympathise with you. I have RLS. However, I can go a few weeks without it or may have it for nights on end. I seems I get it when just sitting down though so I'm lucky. Seems to be when I'm tired and really awful if it starts when I'm on the train, in the theatre or cinema or on a plane. The thing that does help me though mostly, but not always, is I wash my legs before I go to bed or shower and moisturise my legs. I know you may have tried all sorts I'm sure but thought I'd just mention it x

petra Thu 19-Nov-15 12:44:03

Coolgran65. No offence meant, but you are perfectly placed to access Marijuana if your Husband is in law enforcement.

Granny23 Thu 19-Nov-15 15:20:15

It took me years to realise that, whilst bathing, exercising, massaging etc. can give very temporary relief, the problem does not lie in your legs but is due to chemical imbalance in your brain. Something is faulty in the mechanism that should shut down parts of the brain to allow you to rest or sleep peacefully. The more tired you are, the worse it gets. It is also known that it tends to become more persistent as you get older. I would urge any sufferer to speak to their Doctor about trying Pramepexole or Roprinol (sp?). For those who get spells of RLS and then weeks without note, that these pills are not cumulative i.e. you can take them when you need them (preferably 2 hours before bed-time) and then save them until the next time RLS flares up. I have taken one tablet at 2.00 am, had a walk about and been back in bed and asleep by 3.00am - Magic.

suzz Thu 19-Nov-15 17:58:25

two things to try

'Magnesium Citrate Bath Salts', (these are better than taking Magnesium pills/tables as your body absorbs more magnesium through your muscles)

'Turmeric' capsules

If you require more information look up on internet for beneficial properties.

Claudiaclaws Thu 19-Nov-15 18:54:38

Have you had a blood test to see if you are anaemic? I have read, that anaemia can be a contributory factor with restless legs syndrome.
It might be worth a try.

Coolgran65 Fri 20-Nov-15 11:20:43

Anaemia can indeed be a factor in RLS but more likely to be the ferritin serum iron level in the brain. This isn't usually checked in an ordinary routine blood check and needs to be requested. Ferritin level of 20 is ok for a non sufferer. If you have RLS it's best up around 100 especially if using a dopamine agonist medication, ie pramipexole or ropinerole (requip). A DA medication can also eventually cause augmentation which is when the medication actually makes the symptoms worse, a very good reason to keep the dosage as low as possible.

Marijuana and its availability.... believe me..... an absolute 'no no'. I'd be willing to have a go eg in USA where it is legal in some states. But definitely not in UK .... would not consider it...DH career etc

Alea Mon 07-Dec-15 10:07:17

I have just read the following extract in James LeFanu's Monday column in the Daily Telegraph and thought of you!

Finally, a reader writes to tell of his wife’s fortuitously discovered remedy for her Periodic Leg Movements (as they are known) when her dropping off to sleep is interrupted by an involuntary, powerful lashing out of one or other of her limbs. “I have the bruises to prove it,” he writes.
His wife is also troubled by rheumaticky aches and pains, for which she recently started taking the popular Peruvian remedy Uncaria Tomentosa – aka Cat’s Claw because of the hook-like thorns on the woody vines from which it is derived – which has been “100 per cent successful” in controlling the periodic leg movements.

I hope it is of some interest and even help!

Coolgran65 Mon 07-Dec-15 15:02:27

The DT Article appears to be about Periodic Leg Movements.

My understanding is that Periodic Leg Movement is actually a different disorder from Restless Leg Syndrome, although very many people with RLS will also suffer from PLMs. Thankfully I don't have the PLMs.

Periodic Leg Movement = involuntary movement (no choice)
RLS = the horrible sensations build up and up until the sufferer must move to seek some temporary relief. (chooses to move)

I might not have explained this very well and please excuse me if I've come across as 'schoolteacher-ish' in my manner.

Thank you Alea for this because as a sufferer of RLS I will try anything that has any chance of being helpful and I will indeed try the Cats 'Claw' even though my condition is RLS without the PLMs.

Luckylegs9 Tue 15-Dec-15 08:33:37

Never realized how bad RLS was and that you had to keep walking around, I do not sleep well but at least I can lie there without discomfort. I do hope your doctor can prescribe you something that will help. New medicines are being developed all the time, so good luck.