My reply to you all.

[Hamish58]

To all the many who have sent their well wishes, advise and just plain support it is so much appreciated!! I do have an update. I have been able to talk to a different doctor and after breaking down she Now realises how desperate the situation can get. To help me break the cycle and get back on an even keel after my Flu over the weekend which has sent my rls into overdrive I have some good news. I have started to reduce my Ropinerol to change to Gabapentin with the help of a very low dose of tramadol to get me to sleep and reset the pattern of rest I was having beforehand. I have also been to see a physio today and have acupuncture to again try and help reset my neuroempath system. Regarding all the diets, supplement and trigger advise I can only thank you all. To add to my previous post i take Magnesium and will start on the oil tomorrow. I take liquid iron to keep my ferritin level high though I do no know what it actually is. I do not drink milk or dairy, don't drink, no coffee, don't smoke, don't have any sugar, keep an eye on every morsel and keep as healthy a life as work allows (which is quite a bit as I cycle 12 miles a day to work through th countryside)., however was not aware of the problem with onion and garlic. Will cut those out too now. Not sure if there is much else I can do for now but I hope things will start to turn around and I can get at least part of my life back as life, love and the pursuit of happiness is not just the American dream and I can resume my passion for travel. Love and wishes to you all.

[Graham3196]

Hi Hamish

I know you have said you have tried everything but I strongly suggest you give a strict FODMPor low chem diet a try. I don't know what is in the diets you have tried but Onion and Garlic are real no-nos and you hadn't heard about that. How about stone fruit, apples celery, sultanas and everything else that tastes good (just kidding) Enjoy rice cakes with cheese or potatoes and steak. All meat is OK so that is a good start. I have a banana for breakfast and some Uncle Toby's oats. (Slightly green banananas because ripe ones develop a chemical that just might be a trigger) If you have to use another brand of oats make sure its wheat free just in case. Give it a go and see what happens but get a dietician to help. It's really hard to do by yourself. Today start a food diary and include every morsel that passes your lips.

Get iron measurements done because its not too hard to do yourself a lot of damage if you are successful in raising your iron level too much. Its like Snow-white said too little is bad too much is bad and somewhere in the middle is just right.!

Cheers

Graham

[Hamish58 in reply to Graham3196]

Hi Graham. Am following my kinesiologyist diet and regime quite strictly but if you do fall off the wagon you do get punished. Thanks for your advise.

[Joolsg]

Hi Hamish,

I had not realised you were still on ropinirole when you made your last post. That explains everything. You are clearly suffering Augmentation.

There are many of us who have felt so desperate when we were augmenting and then withdrawing from Ropinirole.

Reduce slowly and when you take the last dose your RLS will go crazy and the bad withdrawal will last about 2 weeks after that.

The tramadol will really help at that time so take more if needed during the bad nights.

The Gabapentin will take about 3 weeks to become fully effective and avoid magnesium within 2 hours either side as it can reduce the effectiveness.

I presume you are in the US? If so, and you’re in a State where cannabis is legal, get hold of some sedating strain as it helps RLS and sleep.

It will be very hard but you can do it. Once off ropinirole and through withdrawal you will get your life back again and will start to get some good night’s .

I wish you every strength getting off ropinirole and do let us know how you get on.

Jools

[Hamish58]

Hi Jools. Nope, UK. Have started the withdrawal from Ropinerol to Gabapentin with a little help from Tramadol but I will use that as a prop only when needed. I know the road can be long and at times a bit rocky but it is a journey that has to be taken. I do know about the 2-3 hour mag/gaba rule and will watch what I eat and drink especially over the coming festive season. Thanks for all your help.

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Great news! I hope you continue to succeed!