Real bad night last night thought all was going to well not a wink of sleep legs going crazy stayed downstairs as not to disturb my wife and children must of covered every inch of floor space lucky that legs are still attached to my body rubbed my face and head sore in desperation and anger lucky that today is my rota day off so can hopfully catch some ZZZZZZZZZZs in and out not going to give up just yet after one HELL night

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  • I feel for you nick - we're in the same boat - not a wink of sleep was gotten - a belly full of drugs and my body was attacking me all bloody night. The thing has settled now so will likely doze the day away and be up all bloody night.

    Thank God for sofas!!!!

    F**K RLS!!!!

  • With all the stuff you are doing for your RLS, raffs, how many nights do you have like this? IF you can doze all day and be up all night, one thing I learned is to go with the flow until things improve. When my RLS was out of control, I had to learn to embrace the time I had to myself, and found projects to do that would at least distract me for a little while. I hope this does not happen too often for you.

  • I am doubly hampered with ME so in the past when things were bad I would paint a room, (seen me start painting at midnight and finishing at 6 so I could get washed up for work) or do physical work or even just played games, anything to distract myself. With the ME I've no energy to do anything, especially come evening.

    It was 6.30 this morning before things eased! Bloody arms legs and body had it. Thankfully those sort of nights aren't as common as they were but there is barely a day when I don't get some symptoms that are annoying, (on a good day there is like a ghostly feeling of sensation if you follow me?). A good day and it is more confined to my legs.

    I am taking a sh1t load of drugs and they only take the edge off. Last night I even took Kratom which I don't normally use as I am saving it but it wasn't effective - first time! I had that along with Tramadol and Targinact, a sleeping tablet and my Neupro patch and was still was up all night in agony :(

    Things have been going down over this past few weeks. I am OK tonight but my head is fried from exhaustion and wired from caffeine trying to keep me going. Jesus but this bloody condition is terrible. If I got to choose I would keep the ME and get rid of the RLS, it is just that bloody bad.

    On the plus side I no longer work so don't have to worry about being a mess in the day time and sleep then, (mind you even if I did sleep the ME would demand a few naps throughout the day). Thankful for small mercies.

  • I totally understand the "ghostly feeling" as you call it. I call it "buzzing" before it gets going. These days I only get the bad RLS attacks maybe once every 3 months, but I do get the "buzzing" thing, that tells me it wants to break out, but cannot quite get to me. ME sure does take you energy away. :( I know people drink coffee or something with caffeine to keep themselves going, and you know what that can do. But, I also understand the need to keep going. x

  • I had a good couple of months there bar an odd not so good night and the ghosting, but it seems to have gone on a bad streak this past couple of weeks, hoping last night was the end of it.

    I had a sick child home from school so couldn't spend the day sleeping like I normally would so went for the next best option, (although did manage a bit of sleep, well I had no choice!).

    I am for bed now, fingers crossed I can stay in it.

  • Not fair when we have this horrible condition,at least my family was grown up when mine started and that's bad enough ,I feel so sorry for any of you with a young family it must be hard on your partner as well

  • Keep with it Nick, you will get there. Just out of interest did you eat or drink anything that might have made it worse last night or taken a OTC med like a cough medication.? Just asking. If not then lets hope it was just bad because of the withdrawals and your dopamine receptors were complaining cause they want all that dopamine back.

  • no not taken any OTC meds fingers crossed just a worse night than usual there mostly bad lol

  • how long now for your withdrawal period?

  • Nick have you come off that last pill yet? The last pill can be the worse to get off so others have said on here who have gone through the same. If or when you are weaning off that last pill, just try a 1/4 of it and not the whole of the last pill. x

  • Nick might I suggest a nightly iron supplement to help with your symptoms. Numerous people on here and other forums get relief with one 25mg capsule of ferrous bisglycinate on an empty stomach about an hour before bed. You may need two capsules to start with (taken at the same time) so check with your doctor and always see if you can get away with one capsule. Try to take the iron away from medicines and supplements. Good luck and I have a good feeling about this for you.

  • Yes, Nick, do not give up. It will pass at some point so keep telling yourself that! it CAN be hell getting there, but you are working hard on this, so keep up the good work! :)

  • Nick, i would advise you to find out your ferritin level if you dont already know it. before taking any iron supplements, so yes see you doctor first and if you havent had a ferritin level test yet then ask your doctor to do one.

  • I had the same problem and thru experimenting, I found I could stay in bed and move my legs from straight to a partial V and at the same time flexing my feet. I do it for the same number of minutes that I used to walk and it works every time. No walking needed. Give it a try. I also used to sit in a chair and move my legs up and down using my feet up and down. This worked too but staying in bed has been a sleeping godsend . This plus the gabapentin

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