It’s back!: I got up at 4.00am an hour... - Restless Legs Syn...

Restless Legs Syndrome

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It’s back!


I got up at 4.00am an hour or so ago and felt a bit sorry for myself. I have been doing ok, getting 6 hours or so each night. I have Small Fibre Neuropathy as well as RLS so this complicates things. I usually manage to stay up till 10.30pm then take 300mg of lyrica, 100 mg of Tramulief and 10mg of nortriptylene. Lastly I apply a 2mg Neupro patch. This lot knocks me out and about 6.00am I have 300mg of lyrica and so another day starts. This morning however it was different. I had a loo visit at 4.00am and got back in bed and wham, the spasms started. These have often occurred in the past. I can’t lie on my side as unpleasant sensation in my legs makes my body convulse. If I lie on my back often I can dose off again until 6.00 or so when pain gets me up. Today though it has been horrible and the available time has enabled me to write to write this.I am in the UK and have on several occasions had advice from Dr B and his most recent advice was that methadone could help.The usual response I get from people is that I have not got a cat in hell’s chance but I will try. Apologies for the length!

1 Reply

I am so sorry to hear you're struggling so much.

Frustrating that you're taking so much medication and still suffering.

I hope you've considered seeing a neurologist privately. That may give you a chance of geeting an appropriate ptescription.

Your cade does fit the UK criteria for referral to a specialist. Since all first line medicines have failed, your RLS is "refractory".

I hope you have a better night tonight.

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