🌈May be helpful to someone

[Annieapple]

During this period of lock down when it’s difficult to get RLS help & advice from your GP I feel it may be worth while to share my own experience. If it helps one person it will be worth it!

I have been treated with RLS drugs for at least 10 years & have been through most of them including the various Dopamine agonists (& subsequent augmentation)tramadol gabapentin & opioids. I have avoided alcohol & caffeine. I take iron, & have used every sensible self help measure under the sun.

At present I use the patch 2mg prescribed by a neurologist about 4 years ago. I continue to use it in spite of augmentation because for me there is nothing else left. (I have used different combinations etc.. have severe side effects to gabapentin & some others... etc)

Last year I was diagnosed with high BP & Cholesterol. After a torrid time with drugs for BP & their side effects I was eventually stabilised on 2 drugs. I refused statins as I couldn’t face more side effects etc My RLS was already at its worst & then for me a slow miracle happened.

I decided at the age of 67 to start running! I used the Couch to 5K program never having run in my life since school days. I now run for 30 mins or more 3x a week early in the morning. After a few weeks into the program I began to sleep better with less RLS then usual, & gradually it mostly disappeared. I am still using the patch. I am still running. When I stop running due to illness, holiday etc the RLS is back with ALL its intensity, but gradually dissipates as I start running again. (I have also learned to drink more water which helps with both running & probably the RLS too.)

I share this hoping it may be the answer for someone else out there. It’s not a cure but it sure makes the difference between hell and heaven for me! 🌈

[YodaDog]

Thanks Annie... and congrats to you on finding something that at least lowers the intensity for you. No doubt the running is improving your overall fitness too. And I forget to drink more water, I have heard others state that they think drinking more water helps.

[Annieapple in reply to YodaDog]

👍It certainly helps me 💦😊

[janland]

Hello..

I've just read your article on running.. very interesting..

I've had rls now for many years..but on and off.... just lately more than ever..

I had high blood pressure but initial tablets gave me horrific allergic reaction so was frightened to take any more..

At beginning of lockdown blood pressure went sky high and just had to take more...so doc gave me Amlodipine this time..he asked me to check with him after 2 weeks...but I couldn't get through.!!

I then cut the tablets in half and it seems to work ok...all tablets give me side effects it seems...I'm only small and 8 stone..(female).

I've tried all natural things for rls...I don't have much undisturbed sleep...

I'm wondering if its anxiety thats making it worse?

I try to go for half hour walk every day.. and do yoga half hour...

I have low ferritin so taking iron tablets...but even these can upset stomach..

I buy magnesium to take at night...eat well..no junk food....and only 2 cups of caffeine coffee per day..

Some nights nothing works and lack of sleep is dreadful..

My daughter says I don't drink enough water...but if I up my intake...its difficult when out as no public loos or cafés open..

I'm going to try perhaps not running but brisk walking today.... and perhaps bit further than I usually go..

I'd love to hear from you with any more thoughts or advice.

I'm a retired person... and always seeking a cure...

I have thyroid tablets as well...not sure if these make rls worse or not..

Best wishes

Jan

[Annieapple in reply to janland]

Jan I feel for you & your little owl also tells a story of no night sleep!!

Sadly like you side effects of meds are also a problem for me. The extra walking & water will be good for you. However I have walked for years & not found it of any benefit to my RLS in fact sometimes after a long walk it was worse! However we are all different & it’s certainly good for BP & general health & especially for anxiety as is your yoga.

I am not a natural sports person & my family are VERY surprised that I have kept up the running for more than 6 months now! The NHS app Couch 2 5K is excellent. You start by mostly walking & build up very slowly in fact as slowly as you want to. I still run slowly 🤣 🐌 . The support group by the same name is found on Health Unlocked & is wonderful!!! Why don’t you join and read some posts. Lots of inspiring stories & help for newbies. You don’t have to be a runner to take a look.

As we always say, we are all different, but running has been a life saver for me!! At the very least you get fit & your BP & Cholesterol improve not to mention benefit to heart & bones! Any one can run, any age as long as you follow the rules of the program. It doesn’t cost you anything except for a good pair of running trainers.

You are doing all the right things & I feel for you not getting the relief that gives you some good sleep. Big hug & keep on, keeping on! We pray pray hat one day the research going on will bring us all some answers 🌷🌹💐

[janland in reply to Annieapple]

Thank you for reply Annie

[Orangehorses]

Glad you found something to ease rls. It is a nightmare I know. We all have to find what works for us. What you have shared could very well help others too. Any info to help with rls is always welcome. Keep running x

[Hidden]

Thanks Annie! I'm glad running helps your RLS. I like my gym classes that involve running, jumping and pumping iron (all online now due to covid-19). I think there is definitely something to doing those things that helps.

Thanks for posting!🙂

[KenBR]

Good for you Annie, for never giving up and for trying new things. Wish you the best

[Annieapple in reply to KenBR]

Thank you Ken

[Annieapple]

Yes I do Chi & have never had any injuries. I only run on Mon Wed Fri & once a month swap a Friday for a Park Run.

I am so sad to hear that running doesn’t help your RLS & feel for you. It is such a horrible syndrome & we try anything & everything to make it go away. I hope there is something you can take/do to bring relief now & again.

Thanks for replying. Love hearing from other runners!

[sudokufan]

Just interested - What is the "patch" you are on?

[Annieapple in reply to sudokufan]

Neupro (Rotigotine) You put it on once a day & it releases dopamine slowly over 24 hrs. It is usually prescribed initially by a neurologist & then repeats from the GP.

I enjoy Sudoku too by the way 😊

[sudokufan]

I 've just started on Rotigotine too. Previously took Ropinerole (Requip or something in US) but found it's effectiveness wore off after taking it for a few months. Am only 1 week into Rotigotine, upping from 1 mg to 2 mg and next week maybe 3 mg. Impressed so far. Am still shocked at the dreadful withdrawal effects of stopping Ropinerole before I started the patches though! I appreciate both drugs are dopamine agonists. I do (or did) Sudoku or similar puzzles in the middle of the night when my legs were driving me crazy as mental distraction of any type helps as you know! But I would much sooner sleep at that time. I agree hydration and exercise are both important so well done to you. I don't run any more at age 74 but make sure I always do 8000 to 10000 steps a day, plus pilates/back exercises during the day. I do avoid heavy exercise in the evenings though.

IF ONLY NHS COULD OFFER A LEGS TRANSPLANT!

[Annieapple in reply to sudokufan]

Exactly!! Try and stick with 2mg to avoid early augmentation. You can always add co codamol a couple of nights a week until it settles down. It took me 3 weeks initially!

Yes same story for me with Sudoku. I also use music with soft earphones which is quite a good distraction .

Sincerely hope the patch works well for you! 🌈