Murder!

[MaryJohan]

Had RLS from the age of 10 I’m now 72!

The older I get the worse it gets with relief hard to find both day and night.

Am on Amytriptylline with little effect.

[Kaarina Administrator]

Hi MaryJohan

Have your symptoms worsened since taking Amitriptyline?

Ab0ut 1% of RLS sufferers find this drug helpful for RLS whilst the other 99% do not at all and find it makes the condition much worse. It is listed as one of the medications to avoid if suffering with RLS. rls-uk.org/treatment/

[Tubbygranny in reply to Kaarina]

Not really, haven’t noticed any change good or bad by taking it. I’m sitting here at noon and my legs are causing me to ‘fidget’ already.

[Kaarina Administrator in reply to Tubbygranny]

Hi Tubbygranny, my reply regarding the amitriptyline was to MaryJohan. Have you also been prescribed Amitryptyline and it has not helped you either?

[Tubbygranny in reply to Kaarina]

I’m Maryjohan and Tubbygranny! Not sure how I’ve managed to have two identities!

[Kaarina Administrator in reply to Tubbygranny]

LOL. Oh, I see! So on 11 August 2018 you joined as Tubbygranny and on 6 October 2018 you joined as MaryJohan. It could become complicated! You could delete one of the two usernames......

Joolsg has given you excellent advice.

[Spudvar]

Have you tried Gabapentin? Trade name Neurontin. 300mg 3 times a day, works for me.

[Joolsg]

If it neither helps nor makes it worse- stop taking it and then start a daily RLS diary.

Show the diary to your doctors and discuss medications.

Make sure you’re not taking meds that make it worse like anti depressants ( amitriptyline) and anti histamines and ask for a blood test. Get the actual numbers for serum ferritin ( should be above 100).

Also keep food diary as certain food can make it worse. Main culprits are alcohol, caffeine, sugar, sweeteners, raising agents, E numbers.

Start taking magnesium citrate at night.

If your serum ferritin is below 100 raising it may well lead to an improvement. Ferrous bisglycinate from Holland & Barrett and patches from PatchMD used every other night will help raise levels.

Spend a couple of hours reading the main RLS UK website and posts and responses. You’ll learn a lot that way and knowledge is power.

[Tubbygranny in reply to Joolsg]

Good advice thank you.

[Restless123]

You and I in the same boat. I was a child when I had RLS and have been battling it til now I’m 73.

I would wax and wane throughout all these years but the last 15 have been the worse. I had to wean myself off mirapex in July and I am thankful to have that out of my system. I’m on Horizant and Gabapentin on I’m a whole lot better. The RLS has settled down but I can not get a good nites sleep.

I had to take baby steps to where I am now because throughout this year I was miserable. Many nights without any sleep. July was a turning point of getting better. I hold my breath every nite in hopes of no RLS and getting some sleep.

I don’t thing what you are taking is your answer. You might check out a certified sleep doctor.i certainly hope things turn around for you,