RLS for 15 years, this really helps my symptoms.

[JimmyBlue]

Hi guys... I finally watched the RLS TV program and really identify with both the people featured and the confusion (anger) with regards to the very misleading title!

I've suffered from RLS for most of my life. I experienced terrible "growing pains" as a child which mutated into RLS as I got older. Unfortunately I found alcohol at the age of 8 which dulled the RLS (and everything else!!) for 20 years. Needless to say... it wasn't a great solution and I descended into severe alcoholism.

I'm 45 now (actually turned 45 today) and I'm happy to say that I've been sober for 15 years. Unfortunately (and rather predictably) the RLS returned as soon as I quit drinking.

I feel my most extreme symptoms in my shins, calves and shoulders.

I actually had an appointment with Dr Guy Leschziner who was featured on the program many years ago... huge shock when he suddenly appeared on screen!! He prescribed Gabapentin and Pregabalin which regrettably didn't work at all and made me feel very unwell.

I rather "stumbled" on something that has really helped me which I had to share after watching the show. I felt it was worth posting even if it can help just one person!!

It's a device from the States called "Thera Cane". Rather an odd looking curved "stick" for really deep and focused massage that you can self administer. I initially purchased it for pain in my shins due to martial arts training but (again accidentally) I found it made a huge difference to my RLS.

It's going to be rather difficult to explain but I'll clarify where I can if anybody is interested...

I was using the Thera Cane one evening to try and ease a sore hip and was stunned to hit a tiny spot on the outside rear of my hip that suddenly switched the RLS "on" in my shin and calf. It sounds nuts but this tiny spot on the rear of my hip literally triggered my RLS as I pushed into it. Rather than the pulsating, crawling RLS sensation that I normally feel when I'm lying in bed it was a fierce, intense, "always on" sensation that was almost like RLS powered cramp. It was kind of extremely unpleasant but absolutely wonderful at the same time... a little like the sensation of finding a muscle knot and really digging in deep but turned up to 11.

I have no idea why a spot on the rear of my hip caused such a strong sensation in my lower legs but it really was like finding an itch that I had been trying to scratch for 15 years. Although I was feeling no pain in my other hip, the exact same spot on the other side had exactly the same effect on my other leg.

Needless to say... I beat the hell out of both spots!! It took quite some time but God it felt good!! That night I experienced no RLS in either leg and it lasted for about 3 or 4 days. Once I felt it creeping back I just hit the same spots again and it provided the same relief.

After a few days of prodding and poking I found another 2 spots on the back of my upper triceps that triggered the RLS in my shoulders. So i beat the hell out of these ones as well and for the first time in 15 years I had a totally RLS free night.

I realise it's not a cure but I have no problem pulling out the strange green stick every 3 or 4 days. I now have one stick by my bed and one by my sofa.

It's very hard to write this without it sounding like total hocus pocus but all I can say is it does relieve my RLS symptoms... and I don't feel like a damn medication guinea pig using it!!

I have posted the links to the main company site and the Amazon UK page below. I have absolutely no financial connection with this company or to Amazon!!

It looks like a load of cheaper "knockoffs" have appeared since I purchased mine. I would personally steer clear of them. "Thera Cane" was definitely the first and is a quality durable product.

I really hope it helps guys!! I'm sure we probably all have different "trigger spots" but I'm happy to post where I found mine if it helps.

theracane.com

amazon.co.uk/Thera-Cane-Co-...

EDIT: 5th October 2019

I have added a picture to the original post roughly illustrating my own trigger points.

The actual points are very small so you'll have to search around a bit but you will 100% know when you hit one!!

They're pretty much impossible to trigger with just finger pressure which is why I think the hardness, reach and leverage available with the Thera Cane made the difference for me.

I have been able to completely stop my medication since starting this. Really hope it helps!!

[OxonOsteo]

Thanks for your post JimmyBlue. I also have the very same ‘trigger points’ you talk about in the outside of my thigh. Your description resonates almost exactly with my experience!

I have been struggling with RLS for about 7 years now (I’m 49). It started slowly, but then I started to get it every night. Over the years I’ve tried almost everything - limiting caffeine, sugar and alcohol. I’ve also tried hot baths, muscle rubs and stretching. I drank more water, went gluten free and tried intermittent fasting. When my symptoms got really bad I resorted to taking Codeine. One year ago I had my Iron levels checked. Sure enough my Serum Ferritin was low at 30. I took Ferrous Sulphate tablets (200mg) for 5 months and got my level up to 105. All the above have helped to a greater or lesser degree (especially improving the Iron), but never gave me complete relief.

Recently, whilst using a foam roller after a run I discovered I had really tender points in the outside of my thigh. When I put a decent amount of pressure over one of these points, I literally ‘triggered’ the RLS to start in my lower leg. My leg started with the familiar horrible crawling sensation, with the inevitable build-up to an unfulfilling twitch release. I was amazed I could actually bring on my RLS symptoms. It was a revelation! There’s no denying the feeling was uncomfortable (like positive pain), but after a few minutes of rolling over the tender spots I felt the RLS symptoms slowly start to fade, replaced with a warm feeling. That night I slept through with no symptoms at all!

Now every 2nd or 3rd night I spend about 10mins rolling the outside of my thighs with a firm foam roller (a smooth one made of EVA foam, no bobbles or bumps), finding and working through the specific tender points that trigger my symptoms. I’ve got to say this has been the single best thing I’ve discovered. Although this hasn't cured me (I still need to roll every 2nd or 3rd night), it has significantly reduced my symptoms and massively improved the quality of my sleep. Thanks for sharing your experience JimmyBlue. I hope others might find this useful too.

[JimmyBlue in reply to OxonOsteo]

Thanks so much for your reply OxonOsteo!! So good to hear that you've experienced relief from these trigger points too. It's very hard to write about it without it sounding like a dreadfully cheesy sales pitch!!

Fingers crossed it might work for a few others!!

[Hidden in reply to JimmyBlue]

Thanks for this information. Trigger points are a diagnostic criteria for fibromyalgia, so I'm not surprised that you've found some.

As for your remedy, you may have rediscovered acupressure!

[funnyfennel in reply to OxonOsteo]

May try that as I have strange tender points on both thighs, halfway down on the outside...just rubbed them and will try it !! Rather like using tennis balls to relieve what I thought was sciatica for years...but thats another story and can be Googled.....

[Snugglepuff in reply to OxonOsteo]

Yes I am the same! Texting this as I am on my roller at 2am because forgot to roll before bed. The twitching began and I know it will only get worse. The only thing that helps me is to use the roller and get some myofascial release.

[Sampsie]

Hi JimmyBlue and OxonOsteo,

That's amazing. I've never heard of this but now you mention it, if my feet or legs get touched sometimes it starts of the symptoms. What you say is a revelation to me. I am going to see if I can find trigger points. A regular massage of the points would be so much better than taking my meds. Thanks for this.

All the best.

[JimmyBlue in reply to Sampsie]

Hi Sampsie

I really hope it works for you!! I've been able to totally stop my medication since starting this.

Best of luck to you!!

[funnyfennel in reply to JimmyBlue]

May be worth getting a small massager...??

[Parminter]

JimmyBlue, could you make a diagram and post it?

If you google 'diagram of the body' you will get many possible candidates to start you off, then you could put 'X Marks the Spot/Spots'.

I am not sure you can add an image in a reply, but you can in a new post.

That would be helpful. I'm sure physiotherapists would recognise the locations. And acupuncturists, as Manerva suggests.

[Hidden in reply to Parminter]

Interesting study which identifies trigger points

ncbi.nlm.nih.gov/pmc/articl...

[Parminter in reply to Hidden]

Thank you Manerva

[Parminter in reply to Hidden]

Sadly, it is a very rare allopath who would know what to do with this information.

Back to the pills.

[JimmyBlue in reply to Parminter]

Hi Parminter

I have managed to add a picture to the original post. You should be able to see it now.

The actual points are very small so you'll have to search around a bit but you will 100% know when you hit one!!

They're pretty much impossible to trigger with just finger pressure which is why I think the hardness, reach and leverage available with the Thera Cane made the difference for me.

I have been able to completely stop my medication since starting this. Really hope it helps!!

[Parminter in reply to JimmyBlue]

Thank you so much!

[LotteM]

Thanks Jimmy Blue and thanks for adding the diagram, I was going to suggest you to add a picture. This one is very informative. I’m going to give it a try, one never knows, as we already have a theracane, thanks to a post from Madlegs!

[JimmyBlue in reply to LotteM]

Best of luck LotteM

Do you have a link to Madlegs post? I'd be very interested to read about his experiences.

[LotteM in reply to JimmyBlue]

That will be difficult. You may look through his posts and replies (first find the user, then you can find his posts and replies), but his remarks about the Theracane are at least a year old. And it was not for RLS, but came up sideways. Sorry.

[JimmyBlue in reply to LotteM]

No problem at all.

[Madlegs1 in reply to LotteM]

I've tried to find that snippet, but no luck. Is there anything particular you wish to know? I have commented elsewhere on this post.

Good luck.

[JimmyBlue in reply to Madlegs1]

Thanks Madlegs

Never met another Thera Cane user before! Happy trigger point hunting to all ;-).

[Madlegs1 in reply to LotteM]

Ooooh! I'm famous.😝

Seriously, everyone is uniquely different, which means that term like ' points' can only ever be approximate. But will be in the general area.

Anyone buying the Therastick on Amazon will also be offered a book on finding pressure points, but ,tbh, practise is the most effective way of finding your own particular spot.

I get great relief from mine for all sorts of ailments.

Cheers.

[involuntarydancer]

First, belated happy birthday - I hope you had a great day yesterday.

Secondly, thanks for posting. I have found that certain exercises and stretches can trigger my rls and certainly that foam rolling does. However, I never thought to work right through it to see if I could use the trigger points ultimately to find relief. I have both a theracane (which I find great for shoulder massage and relief from migraine) and a foam roller so will look at working on this. It is especially timely for me as a physiotherapist has advised me to start foam rolling my outer thighs regularly.

[JimmyBlue in reply to involuntarydancer]

Thank you for your kind wishes. Good luck with hunting down those trigger points!!

[funnyfennel in reply to involuntarydancer]

All sounds quite exciting, even if we need some drugs as well....it may help.

[marigold60]

I have a trigger point, but its at the bottom of my spine. When I discovered this I started to use ibuprofen gel on the spot which worked for a while. I then discovered using an electric massager on the same area with a certain amount of pressure helped too. As it stopped working so well I went to the doctor's and was prescribed pramipexole. If I'd found this site beforehand I would probably have tried to continue managing it myself as I didn't realize what a slippery slope drugs can be

[JimmyBlue in reply to marigold60]

I would certainly recommend having another go. It's still as effective for me as the day I started and it's been a few years now. Best of luck!!

[Hidden]

I have no idea where any trigger points would be for RLS in my legs, ? Do i go all round my body..?

[JimmyBlue in reply to Hidden]

I would start around the hips but essentially yes... it's a hunt around the whole body. Best of luck!!

[Abookwriter2]

I now have the theracane and have used it twice. It’s amazing to find that spot that triggers the nerves and starts and stops the RLS! Thanks and my husband likes it too for sore back.

When I start getting the pulling even after taking a ropinole, I just get up and use it.