Rls getting worse

[silleecharle]

At my wits end, not one wink of sleep, my rls seems to b getting worse, nothing eases it and its moved into my arms, iv tried most meds but is there anything left I can ask my doc for, its starting to affect my mental wellbeing.

[Madlegs1]

A bit more info would help. Med history? Symptoms over last year? Worsening reaction to same med? Recent change in med or dose increase?

That'll do for a start.

Cheers.

[silleecharle in reply to Madlegs1]

Iv suffered with rls on and off for yrs, iv tried quinine, pramipexole and I'm on riphinerole atm but its not working, I only get ease for a few wks then its as bad as ever again, iv tried home remedies, epsom salt bath, magnesium spray, halcyon bracelets, ur usual old wives tales stuff, nothing is working, even holding this phone is a challenge cause the sensation in my hands is awful

[Madlegs1 in reply to silleecharle]

I suspect you are getting augmentation from the ropinerol- you would need to get off this onto something like Gabapentin/ lyrica Horizant or even Tramadol .

Read the info on rlsuk.org - meds to take and avoid - and also read up on augmentation and how to deal with it.

I'll try to find the link to a good article and post it here.

Meanwhile , keep busy and take a hot milky drink with honey and cinnamon and a tiny bit of turmeric. Won't do much for the restless legs - but will take your mind off it.😈

[Madlegs1]

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[Madlegs1 in reply to Madlegs1]

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[Matrix]

It's the pits , I get it too and when it's bad I get it in hips legs arms all overt really . I know how you feel and how distressing it can be but I don't know what to suggest , tried everything nothing works . I also have fibromyalgia which makes it worse because whenever I get into a flare ( which is a lot ) I get restless legs as well , on top of getting it normally . I bet like me you wish you could cut them off .Sometimes if your lucky and you start to get the feeling coming on take some pain relief quick walkabout for twenty mins . But if you wake with it it's probably too late . All the best

[DeeS in reply to Matrix]

I am exactly as you describe

[Maximus00]

I too have extremely bad RLS but with me it is with my feet. I had hardly any sleep for the last 3 months then just over a week ago I got a fan and I have it pointed at my feet

when I'm in bed and have it blowing air on my feet. It seems to have worked a treat because ever since I started doing I've had a good night's sleep ever since.

It's unbelievable what a difference a good night's sleep makes to my life.

[Lindy14 in reply to Maximus00]

I had a similar reaction to my "lovely legs" when I found that sticking them outside the cover whilst in bed reduced the amount of sensation and kicking considerably. I explored this further 'cos a problem occurred when I turned over as I couldn't manage to keep my legs out from the cover then. I tried a variety of cooling equipment including a large cool mat. It sounded good, but it was freezing when I got onto it and within half an hour it was warmer than my legs as it didn't transfer the heat.

The best thing I found was an electric mattress topper that you can set so that you can heat or cool the mattress. Voila! I had cool legs for the whole night AND it worked throughout the night to keep my legs cool, thus helping to stop any twitches or violent kicking session as well as the horrible sensations. If I'm going anywhere I take it with me 'cos I'm in agony without it.

I still need medication, but I'm certain that I'd be on more medication without it.

[silleecharle in reply to Lindy14]

Iv seen these toppers advertised, I'm not sure if it wud help my rls but my body can't control my temperature and I'm always roasting and sweat terribly, it cud b -2 outside and I'll still need my window open and my fan going, this topper wud certainly help me keep cool

[Matrix in reply to silleecharle]

I have the same problem with temp control ,when I do have time in bed I'm in and out of bed sorting from duvet to sheet ,my bedroom can be so busy .You can get pillows too but bet you any money if I bought one I would get chilly .Let me know how you get on ,if you do get one .x

[Lindy14 in reply to silleecharle]

What I like about the toppers is control you have regarding the exact temperature it reaches and the length of time it can keep the mattress/i.e. my legs at that temperature.

My husband queried whether it actually had any effect on my RLS. We went away for a holiday using a ferry overnight. I tried all sorts of ways to keep cool legs, to do avail. As hubby was on the receiving end of my RLS, he was definitely sure that the matteress reduced the severity of the RLS! Look on the website of "the Personal Cooling Centre". It can seem expensive so you need to be sure that this equipment will work for you.

[silleecharle in reply to Lindy14]

I'll have a look, I know they are not cheap but a good nites sleep is priceless

[Maximus00 in reply to Lindy14]

Where can you get these toppers from ? I can't find any here in the UK

[silleecharle in reply to Maximus00]

Iv not checked myself but I did see them advertised on the this morning program showing u ways to keep cool on hot nites, I think they were around £229

[rb76 in reply to Maximus00]

Do u do this because they burn ? X

[silleecharle in reply to rb76]

Cooling ur legs down can help with the blood circulation therefore helping to ease the urge to move them, dsnt work for everyone tho

[Maximus00 in reply to rb76]

Yes, they burn terribly. It's the soles of my feet that are the problem.

When it's really bad they twitch and jump violently and kick out.

[Lilian18]

I know how you feel I'm the same I get pamiprexol 18mg take two at night I also bought hylands leg relief and. Halcyon copper bracelets they might help the pamiprexol helps ask your doctor for them

[silleecharle in reply to Lilian18]

Iv used everything, the bracelets, magnesium spray, cool gels, and iv been put on 4 different types of medication but all only work for a matter of weeks, iv had bloods taken to test my iron and vitamin b12 in case they r low, I get it rite up into my arms and hands, its horrendous

[rb76 in reply to silleecharle]

The burning is what drives me insane ,I feel I don't no how long I can cope with it .

[Maximus00 in reply to rb76]

Yes, I felt exactly the same. At least now I'm getting some sleep but I still wake up sometimes about 3 or 4 am with my feet burning. I was so bad a few weeks ago that I wasn't fit to drive because I was getting no sleep and was afraid of dropping asleep at the wheel.

[Hidden in reply to Lilian18]

Lillian, is that a typing mistake with your dose of Pramipexole 18mg.?

[Lilian18 in reply to Hidden]

No I take two sorry 0.18mg at night hope this helps

[John_naylor]

Agree you need to come off dopamine agonists (Ropinorole etc). Coming off can be a couple of weeks of hell so suggest you ask for Tramadol, a non addictive opiate pain killer which should help you through. You may find it is all you need...!

[Janieliza in reply to John_naylor]

Tramadol isnt a none addictive pain killer.....it is addictive. the withdrawals are horrendous. It's now on the controlled drug list as a schedule 4. It does however work slightly differently than most opiates but the addiction factor is still there. You are right however that it should help rls....taken with other meds. I hope you don't mind my sending this to you...I thought initially I'd read it incorrectly...you meant both...tramadol and a none addictive pain killer...then I put my glasses on lol. J

[silleecharle in reply to John_naylor]

Iv been on tramadol for chronic back pain and the withdrawals were the worst plus I found they made my rls worse SL I was put on morphine which after 6 yrs iv weaned myself off, I feel so much better for it if only I cud get my rls under control

[Hidden]

Have you read what I do..in Rush mis so no time to write it all again..

[Pippins2]

Silleecharlie have you read the article about augmentation that Madlegs gave you the link to? If the Ropinerole is causing the problem no amount of bed toppers will help x

[Sprite66]

I too have it all over, legs, arms,feet, hands, back and neck, and it's connected to my fibromyalgia, and created a mood disorder. Been going on now for 2 years every night, but worse early morning. I too am finding Ropinerole makes it worse, and that's immediately from starting it - rebound side effects. I take tramadol first thing which helps with the fibro but I've just recently read that tramadol can cause augmentation of RLS. This could be true as I've noticed on high doses it does in fact exacerbate RLS symptoms. I'm now suspicious of everything and wonder if any of these meds actually do work, or if they contribute to these symptoms eventually. I've now started taking massive doses of magnesium malate. There is a bio spray of magnesium and glucosamine which slightly helps immediately on spraying it and massaging in but obviously doesn't last. Also, if you drink alcohol it increases it, even a small amount. I can't walk it off due to osteoarthritis in knees and immobility issues but am obsessively stretching and rubbing, sometimes thumping and twisting my muscles when the pain is not at it's highest. I guess we just have to find our own individual ways of trying to achieve some kind of relief. I'm reading a book about magnesium by Dr Carole Dean, and she mentions that vit d3, of which so many of us are depleted in and have to supplement with, actually depletes our magnesium, therefore the need for massive magnesium supplementation. Three big doses of magnesium malate a day, and NO alcohol. It's not immediate and takes time for the body to accumulate levels back up. This is all I can offer at the moment and am trying it myself. It's worth a shot.

[silleecharle in reply to Sprite66]

You have just described me, I too suffer with osteoarthritis but in the spine, last yr aged 40 I had to have an operation to remove discs and widen my spinal canal, I have high levels of inflammation in my body and atm my doctor is exploring all avenues for the cause, fibro and even rheumatoid arthritis, I have been on all levels of pain relief over the yrs and just recently decided with my doctor to come off all of them is morphine, lyrica, naproxen, sevredol, robaxin, I'm still on the riphinerole and duloxetine but as iv mentioned its not working very well, tramadol makes my rls a lot worse, I have tried everything I can think of even trying cannabis oil (legal), its costing me a fortune and yes alcohol makes it 100 times worse, its no life, I cdnt drink on my meds now iv stopped them I can't have a drink for fear of being up all nite with rls, my life has been full of meds, pain, bed rest, doctors and specialists, I just want to live again cause life is too short but its one thing after another, Thankyou for ur reply xx

[Hidden]

Hi silleecharle.. Read my reply to ll1LINDY Bizarre i know but its worked for me.. Might be worth a try... Ive had many a sleepless night with RLS.. Fingers crossed for you.. jimmy

[vegasterrier55]

Hi, as I have mentioned in my previous post I too suffer with RLS

By pure accident I was prescribed Dippipanome Cyclizine. for a short term problem, but I discovered that it killed my RLS, I take one at night a hour before bed.

I sat down with my GP we discussed the RLS and he agreed to prescribe as it's the only drug that works..