RESTLESS LEG SYNDROME VLOG

Hello Welcome to my New Channel. I have Restless Legs Syndrome and have done since I was 5 years of age. I am now 57. My family suffer from it too so I thought I would start a Vlog to show how it effects me. Food? Drink? sugar? I am currently on Pramipexole looking to change that for something that works. I fortunately when I take Pramipexole, it sets me off
I also have another channel called Fat2Health, where I have lost 11 stone and show people what I eat and a little of my incredibly busy life.
I'd love to hear from you, please feel free to subscribe and comment down below
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#Restlesslegsyndrome #RLS #WillisEkbomDisease #restlesslegssyndrome #pacingthefloorboards
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[@sandraferreira4344]

Thank you for your video, I live in South Africa, and have horrible RL every night. If I get 2 hours sleep at night I am lucky, I have tried everything from prescription meds to herbal. Nothing helps. So I will follow your videos hoping I come across some advice that helps me. Thank you once again.

[@livingwithrls5250]

hello. sorry for late reply. I've not been great recently with terrible RLS. My doctor's are slowly taking me off Pramipexole due to the horrible augmentation I have been experiencing. They have put me on Gabapentin it will take upto 6 weeks for me to feel any benefit. At the moment, I have going through hell coming off Prami. I hope there is a light at the end of the tunnel. are you following other RLS Facebook pages? there are some great advice on them...what works for one may not work for another. I hope you find relief too. x

[@angelatibbles9151]

Hi , ive suffered for nearly 30 yrs , im 65 , my daughter 39 also has it .Been on Cabergoline ,pramipexole and now Ropinirole . All have worked well for a long time . Still have really bad times when nothing helps . My b12 was low so had injections and now take tablets and gentle iron . Gp wasnt interested so had to go private in the end . What helps .... Sometimes cold water , sometimes hot , walking helps , kneeling and rocking from side to side. Soak feet in magnesium flakes , not sure it helps ? Magnesium cream did abs nothing. Sometimes massage helps ,sometimes it makes them worse . Its a horrid , horrid ailment and I have had nights tho not many with no sleep at all . Sometimes my arms are bad as well and actually hurt . When Im having a "crisis" period I want to eat and also feel the need to wee a lot . Told consultant this but not interested !! Good luck fellow sufferers x

[@juliegould9383]

Sounds like you're also suffering augmentation. You have to get off Ropinirole and Pramipexole. It's the only way to stop it. Research yourself as doctors in UK know zero.

[@livingwithrls5250]

hi Angela thank you so much for commenting. I am so glad you are here. knowing others are out there pacing the floor strangely helps knowing we are not alone. I have a phone appointment with my doctor on Wednesday. I have things I wish to say and ask... the first would be to get me off Pramipexole for sure and to perhaps try the Buprenorphine apparently it's worked for some... I shall be documenting it as I go. Eating seems to relieve some for short periods of time. Together we need to reach as many as possible and have our voices heard. All the very best and thank you once again. x

[@angelatibbles9151]

@@livingwithrls5250 When I last saw my rls specialist in Bath he totally disregards augmentation which is quite interesting coming from an expert . Everytime I think I have augmentation they are really good again so I dont think it is . Good luck !

[@juliegould9383]

Oh this is so upsetting. To see you in full blown augmentation on Pramipexole brings back horrible memories. Have you tried to get off it? Mine is now totally under control after getting off the stuff.

[@livingwithrls5250]

I am currently coming off Pramipexole... 3 days in and it's horrendous. Doctors have put me on Gabapentin.... I have no idea if this is a good decision? They have also put me on 2 painkillers codeine. so far I've been awful throughout the day and no sleep at all. finding it difficult. how long did it take you to come off? what are you on now? x

[@juliegould9383]

@@livingwithrls5250 Jacquii, I've tried emailing but bounces back. Reduce Pramipexole by half 0.088 every 2 weeks. You may need Tramadol a d cannabis to help. Increase gabapentin by 100mg every 2 days up to 1200mg, average RLS dose. Nothing will help fully until 2 weeks after last dose of Pramipexole. Ensure serum ferritin is above 100 as it can reduce severity of augmentation for some. If gabapentin doesn't help after 6 weeks, ask for a low dose opioid. HealthUnlocked RLS forum has lots of patient experts who will guide you to the right specialists in the UK. There are only about 4 or 5 who know more than the basics.