Return of the RLS: Hello again fellow... - Restless Legs Syn...

Restless Legs Syndrome

22,294 members16,339 posts

Return of the RLS

Netball-50 profile image
3 Replies

Hello again fellow sufferers. Well I've lost track of where my journey is at. I paid to see a private neurologist who prescribed pregabalin 75mg no as gp increased it and 3 clonazapam early evening on his advice. At first it was amazing no symptoms slept right through no twitching or thrashing about for about a month. Now owly bit surely it has returned big style!!!

I saw a registrar through NHS who said to go on a DA I said no as augmentation which he looked puzzled at! He then sent me loads of different blood tests. Then asked me about a sleep study which is what I wanted. He referred me to neurophysiogy. Got a phone call from them the woman on phone said "oh no we don't do them for RLS only people with narcolepsy. Then not heard a thing. Then I chased up what was happening. I got my digital letter to got to the hospital to see neurologist. I waited 40 mins and then asked if they were running late she then started with her apology I'm so so sorry it should have been a phone call!! I was fuming. She rebooked for the week after when I answered the neurologist said " I do t k ow why they've asked me to ring you your under a different neurologist. I explained I am suffering badly and explained I've seen professionals in the past but they have all left and they weren't neurologists!! He just repeated I wasn't his patient. I said so I have to suffer till I get another appointment which may or may not happen I could have cried I was more angry really.

Im thrashing about arms n legs trying to hold my job down and it disturbs my other half. I'm getting no where!! Just plod on. Any suggestions appreciated I'm all out of ideas. 😢

Written by
Netball-50 profile image
Netball-50
To view profiles and participate in discussions please or .
Read more about...
3 Replies
Joolsg profile image
Joolsg

I'm so sorry you've been badly let down. Sadly, it's what happens to the overwhelming majority of RLS patients because RLS isn't taught at medical school or during GP training.Here's a link to a GP training company in the UK that teaches 10,000 UK GPs

It's actually very good! I'm surprised how up to date it is. The dose you're on of preg is far too low for RLS. You should ask your GP for the correct dose which us between 150mg and 450mg a night. Titrate up slowly by 25mg every 2 nights until you're at 250 and monitor effects.

Here's the link. Show to your GP.

nbmedical.com/kiss/kiss-res...

580480 profile image
580480

Stay off CAFFIENE drink only ROOIBOS TEA IT WILL TAKE 3 TO 4 WEEKS TO GET IT OUT OF YOUR SYSTEM……DONT BE FOOLED BY DE-CAF IT IS NOT CAFFIENE FREE

btthemd profile image
btthemd

Keep trying other drugs and diet. Great information from the other replies. I use tramadol and has worked for over30 years. But......you have to experiment on when to take and how much. Never take the slow release as it doesn't work for RLS, you need the 50mg tablets. I take 2 or 3 tablets, 3 to 4 hours before bed. NO RLS the majority of the time. You need to work up to that amount or they will keep your mind awake. try, try and try again until you find what works for you. Wishing you the best....been there.

Not what you're looking for?

You may also like...

Appointment today update

I have to write a post as I am so so angry after my appointment today. It took me nearly an hour...
Netball-50 profile image

RLS

I’ve had RLS for over 20 years now. Mine is so bad I’ve called for an ambulance twice. They came...
barbiepearl profile image

RLS or neuropathy?

Hello everyone, One day ,about 4 months ago ,when i woke up I had a strange feeling of of ants...

At last a phone call

6 weeks ago I wrote to my g.p. as it’s impossible to see them at the moment. I explained in the...
bedith6 profile image

GP lack of knowledge

I went back to my GP today to ask for renewal of gabapentin & to ask about oxycodone versus...
Joolsg profile image

Moderation team

Kaarina profile image
KaarinaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.