Ridiculous, horrid disease

[Memmy]

As some of you know and have helped a lot, Ive just started pregabalin. At the mo it only helps with tramadol but I hope I can soon stop the tram. This horrid disease is really puzzling. What on earth is it? I nearly always was affected more in my right leg but suddenly with the preg its moved to the left leg Does anyone have any answers. Luckily I only get it at night so I dread bedtime. As soon as I lie down it starts, If I lie down at midday its fine. Why, Why Why.

[Hidden]

I think I understand where you're coming from. There are "scientific" answers to your questions. They're probably not the answers you're looking for, because you may think, whether you believe in a god, or gods, or karma or simple fate, why is RLS happening to ME?

Is there no justice?

I've always had RLS mainly in my right leg, (and right arm and right shoulder) and it's never swapped sides. I also have nerve pain from my spine and that's mainly down my left leg.

Unlike you, I now have no problem getting to sleep at night. Staying asleep isn't always possible. However if I lie down during the day, the twitching starts.

It's perverse.

I suppose part of the explanation is that we have two brains, one for each side of the body. They're not identical, there are variations between them so I guess that might explain why one side is more affected by RLS than the other.

Since the different drugs for RLS act in different ways, perhaps it could be that one drug is more effective on one brain than it is on the other and another drug the other way round.

As for a moral reason for it, maybe it's better just to accept.

There isn't one.

[camperqueen]

Hi Memmy

Like you I take Pregabalin and Tramadol, and also like you I would like to cut down the Tramadol, In fact my GP wants me too. I have only managed to go down from 200mg a day to 150 mg, taking 50mg about 4.30 and 100mg with the Pregabalin at 9.30pm, going to bed around 11.pm. I cannot seem to cut the Tramadol any further, if I do the legs really go crazy. Also about an hour after going to bed they start to pulse and I have to get up. Go back to bed half an hour later, wake again at about 3.00am, another half hour pacing, then back to sleep and wake around 8.00am. Who can figure it out?

However after reading about CBD on here, I have just got some and will be adding that into the mix! Just hoping it will let me sleep all night, that would be soooooo good! First night tonight, so will let you know how it works. I am hoping as I increase the CBD oil I can decrease the Tramadol, can only hope.

This does not really help you, but at least you know you are not alone, and I must say I am a lot lot better on my present meds than on Ropinirole, as that augmented and I had busy legs most of the day if I dared to sit down, as well as half the night.

Stay positive, keep trying to cut the Tramadol and I will report back on the CBD oil.

X

[Memmy in reply to camperqueen]

Thanks camperqueen. I think I am luckier than you as I dont have any problem during the day. I did when I augmented on mirapexin and know how awful that is. I only take 50mg tramadol at night and Im scared of them running out and always worried that they wont prescribe them. So on some nights I take codeine which doesnt work very well and I spend those nights pacing the house. Today I was lucky as my doctor prescribed 2 boxes of tram which will keep me goi g all summer and autumn. Ive upped my pregabalin to 200 and Im going to try and go to bed without tram but at the first twitch I'll take one. CBD oil didnt work for me so I hope you have better luck

[camperqueen in reply to Memmy]

Hopefully Memmy you will be able to kick the Tramadol as 50mg is a low dose. The problem with rls is that it does what it likes and is unpredictable. As I think I said, sometimes I sleep almost all night and have hardly any daytime symptoms and other times I am up half the night and cannot sit down for periods in the evening. I do think exercise helps, and try to walk a fair distance each day. Sorry to hear CBD was no good to you, I hope i fare better.

Good luck for the future. A good life is possible with rls.

[Memmy in reply to camperqueen]

Maybe I didnt take enough.I may try again. Mine was 300mgs and I see most people take 500mgs. My children are insisting I smoke a spliff before bed, I may even try this Im now sitting on my bed with my foot in a bowl of ice water I think its not going to be a good nigbt. Oh well