What works for me, mostly

[Hofmeyr1]

Hi all, I've had RLS for 20 yrs and for last 10 yrs have been treating it mostly successfully with Baclofen, an anti spastic treatment in tablet form, also a treatment for MS sufferers, as it helps with spinal nerve damage spasms, which, in my case seems relevant as I have a permanently pinched spinal cord due to a permanently compressed spinal fracture. While it seems reasonable to connect this injury to my RLS, no doctor can tell me if this is in fact the case. I got the injury 7 yrs before my RLS started up. I take 2 tabs of 10mg before bed time. My RLS onsets seems to be connected to my brain wave frequency as it only starts up when I am just about to fall asleep, i.e THE WORST TIME for this to start up I use brand name TEVA BACLOFEN, or BIO BACLOFEN, I live in South Africa. Baclofen for me works 90% of the time. When I am over tired or worried about something, I tend to get woken by spasms in the middle of the night, needing another dosage. However, if I take more than my usual dose I have a 'hangover' the next day of slight 'aftershocks' in my hands: irritating little spasms occurring at regular intervals, enough for me to have to take care not to spill tea when holding a cup. Like I said, very irritating and quite upsetting, actually, so usually when I DO wake up at night I avoid a 2nd dose: rather dosing my legs with warm water via a hand shower which is usually soothing enough to let me go back to sleep. I hope this may be helpful for some of my fellow RLS sufferers

[nathanwilde]

Hi Hofmeyr1!

Sorry to hear you suffer with RLS. I know how absolutely awful it can be.

Some really good info you've posted here, very interesting.

I wrote a thread with my experiences too - maybe between all of us we can figure out some kind of correlation. Or altleast learn how to manage it as best we can.

healthunlocked.com/rlsuk/po....

All the best of luck with your battle against RLS!

[involuntarydancer]

Thanks for posting, Hof, and glad you are getting such good relief. My understanding is that of the characteristics of Rls is that it comes on when one is falling asleep - although there are those unfortunates who have it day and night. Mine certainly presents as you described - as I’m falling asleep - a bit like a school bully taking his chance at the optimum moment, just when your guard is down.

I will take a look at Baclofan. It’s always good to hear of different meds as there are so few that are really effective. I know there is at least on ms sufferer on here so she may be taking it already. All the best.

[Joolsg in reply to involuntarydancer]

Hi ID,

Think you mean me!

I've heard of it but never taken it for my MS spasms but will definitely ask my neurologist what she thinks.

Strangely enough, my sister is on it for her MS leg "spasms" (which I actually think are RLS) and Baclofen definitely does allow her to sleep.

I'll grill her about it in depth tomorrow and will report back asap.

I know Dr Buchfuhrer has mentioned it in one of his books & I seem to recall he doesn't think it will work for all RLS sufferers ( but we know that applies to every treatment).

I know for a fact that my MS spasms are completely different to my RLS ( they happen any time- day and night & are uncomfortable but no comparison to the foul creepy, crawly unbearable RLS sensations).

If someone can benefit from it though, it's definitely worth a try

[nathanwilde in reply to Joolsg]

I've found RLS to be a nightmare on it's own, but to deal with MS at the same time? You are a hero.

I wish you the very best.

Nathan.

[Joolsg in reply to nathanwilde]

Nathan,

Thanks for that but I can assure you that MS is nothing compared to RLS. There are now brilliant drug treatments for MS ( the last 20 years has seen very intensive research & many innovative drug treatments).120,000 people in the UK have it, that's around 1in every 1000. RLS affects around 10% of the population. I would estimate around 200,000 have severe to very severe RLS.

I have had every MS attack there is to have- numbness, pins & needles, losing ability to walk, losing sight in my eyes, excruciating pain, double incontinence, etc, etc, and honestly, they are a walk in the park compared to RLS.

That's why I get annoyed that RLS is not taken seriously- it is not classed as a disability and people with RLS do not qualify for disability benefits. Yet all the people on here with severe RLS suffer nightly torture and severe sleep deprivation which in turn causes depression and other serious health problems.

That is more of a disability than MS and that is why we all need to keep pushing for RLS to be classed as a disability and for doctors to take it seriously and at least learn the basics of the condition. If as much research was carried out on RLS, we would have new drug treatments by now that completely stop it.

We have all come across GPs and neurologists who have no idea what this condition is, how badly it affects us and how to treat it.

Rant over.

Hope everyone manages more sleep this year than last.

Jools

[nathanwilde in reply to Joolsg]

Jools that literally brought a tear to my eye.

I am so happy to find others that also understand what a living nightmare RLS can be. It is so depressing when your family, friends, doctors, people at work look at you as if you're insane when you mention it. Sometimes I have felt so alone and hopeless.

I'm so sorry that not only do you have to battle RLS but also MS.

Thank you.

[Joolsg in reply to nathanwilde]

This is a fantastic forum Nathan and the wonderful people on here have literally saved my life ( and those of many others).

There is always someone on here to help and advise, even in the darkest hours.

Between them they know more than any of the neurologists I have come across.

So welcome to the forum.

Have a read of all the posts over the last few months and you’ll see that people have a wealth of knowledge and experience they’re happy to share and they’re always available to help others through very difficult times.

Happy New Year!

[nathanwilde in reply to Joolsg]

Thanks Jools I have been visiting this forum for a number of years now, I just never registered or contributed during that time, I have been more active on other RLS forums though.

I agree there are some very helpful people around, and I hope to be one if I possibly can!

Happy new year to you too.

Nathan.

[Ikeeptrying in reply to Joolsg]

Jools, I too suffer from MS and RLS. My symptoms of MS are so mild compared to RLS. RLS robs you of sleep which is the worse. Anyway just wanted to let you know you're not alone. Here's to better sleep for all of us in 2018.

[Joolsg in reply to Ikeeptrying]

I have read reports by the MS society that around 30% of those with MS will also have RLS.

I’m convinced it’s MS scars in the spinal column. I think that’s why people with spinal injury or after spine operations also suffer RLS.

I’m glad to meet another person with MS on here so Hi!!

Presumably your MS neurologist isn’t very knowledgeable about RLS? Mine isn’t, but at least she acknowledges it.

Happy New Year.

[Ikeeptrying in reply to Joolsg]

Hi Jools, Hate to say it but my neuro doesn't seem to be knowledgeable about MS or RLS. I'm trying to get another neuro but it's a process when you're in an HMO. BTW, he doesn't acknowledge anything. He is just the original Dr. No!

[Joolsg in reply to Ikeeptrying]

Really sorry to hear That.

I at least now have a good MS neurologist ( though I've had some dinosaurs in the past!) & a great MS nurse who I can call any time. My MS neurologist wrote to my GP to tell her to prescribe tramadol when I was going through withdrawal from Dopamine Agonists so she's a great ally.

Excuse my ignorance, what's an HMO? Here in England, it's a House of Multiple Occupation ( & that wouldn't stop you getting a Neurologist.)

Are you on any Disease Modifying Drugs for the MS? I'm on Tysabri & it's helped my MS enormously. I was hoping it would do something for the RLS but it doesn't make any difference.

[Ikeeptrying in reply to Joolsg]

HMO stands for Health Maintenance Organization. It's an organization, a closed system actually, a network of medical services. You can sign up once a year for a year. During that year you can't go out of their system without going through some stringent bureaucratic procedures. I've been in mine (Kaiser) for years and most of the time it works well, unless you get really sick with weird diseases like I have.

I have never been on any DMDs for my MS. And now they say I'm SPMS so none will be prescribed. Just trying to ride out my symptoms and hope it doesn't get too much worse. What stage is your MS?

Seems like from what I've read here that your health services in England are very good. Just to get a good neurologist is a miracle.

[Joolsg in reply to Ikeeptrying]

I take it you are in the USA?

I feel incredibly lucky to be born in England where you get free health care from birth no matter whether you are rich or poor. I am also incredibly lucky to have been put on Tysabri 10 years ago - I was definitely at the SPMS stage but Tysabri enabled me to walk again without sticks and halted my MS in its tracks. Having said that- we have a Conservative government at the present time & our NHS is struggling due to severe lack of investment. I only hope it survives!

There is a new drug called ocrelizumab which works for SPMS and PPMS but it has only just received its European licence. I wish you could get it over there as it has shown incredible results for Progressive MS.

Are you able to get any drugs for your RLS?

[Joolsg in reply to Joolsg]

Hi again,

I've just looked over a few of your posts & see you are on gabapentin & sinemet. I also see you suffer double vision on the gabapentin. I was on gabapentin in Jan 2017 and I also had terrible double vision and severe diarrhoea on it. It didn't seem to help at all so I switched to Oxycontin ( I know it will be almost impossible for you to get opioids in the US now) but had to add Pregabalin ( Lyrica) to stop panic attacks & wakefulness caused by the Oxy. Pregabalin is similar to gabapentin but with fewer side effects & I do occasionally get double vision & blurring but only about every 10 days. If you can get pregabalin, I think it would be better for you than gabapentin.

Well it's after 2am here and my drugs have kicked in so I'm off to see if I can get some shut eye.

Hope you sleep well,

jools

[involuntarydancer in reply to nathanwilde]

Nathan, Joolsg IS a hero - to most of us on this forum and, I have no doubt, also to many in her personal life. She posts selflessly and always with a view to helping others. Her observation that her MS is put into shade by her Rls is so incredibly affirming for those of us who struggle to manage with just Rls. You nailed it with your description of her.

[Drmm]

Interesting- this has been my theory about RLS for years and I have been “dismissed”....