Struggling BIG time

Hi guys,

I thought i had posted this earlier on but it must have deleted it from my phone. I apologise if i keep posting in here but I'm at a loss as to what to do to get relief. If you didn't see my previous post, I'm a 25 year old male with a history of depression and anxiety and extreme tiredness the last couple of years. Nothing has ever helped the tiredness so i webcammed my sleep one night and found out i move my limbs a lot. Mainly my feet but also mainly my hips, along with head jerks and hand movements.

RLS has never really bothered me up until the last few weeks. I didn't even know i had it until then although I've always felt like i had to move my legs at some points. The hair on my legs has always been on the inside, but has rubbed away on the outside. I thought that was just how it grew. In the last few weeks, I'm now getting extreme daytime symptoms in my thighs which is bordering on pain, about 2 hours of sleep every night which is really taking its toll on me, and waking up shortly after sleeping all of a sudden. This is after using a sleeping med like Temazepam or Zopiclone as well. I'm so tired but i can't sleep and i don't know what to do. I started on rotigotine patches yesterday at 1mg,how long do these take to work?

I'm so desperate. I've been thinking of going to A&E. I know there's probably not much they can do for me but it won't go away and I look ill with lack of sleep. The symptoms have just suddenly come on 24/7 and my blood tests are fine. I've been having dark thoughts as I'm at a loss as to what to do. The GP's don't really seem that concerned even though I'm begging them for help. I just need one night of sleep which I haven't had in weeks

10 Replies

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  • Hi Ritigotine patches take around 4 hours to work with maximum build up taking around 72 hours.I am just checking that you are not taking the Ropinerole as well as you shouldn't be on more than one dopamine med at once? If you are having dark thoughts they should not be ignored, if y can't get in to see your doctor today go to Casualty or contact the Samaritans for help and support. X

  • Hi Pippins,

    The GP changed me from Ropinirole to Rotigotine after one dose after i did some research and found out the Rotigotine had a better side effect profile. I'm constantly with someone at the moment and i definitely don't want to harm myself or anything like that. I'm just so sleep deprived it's unreal and sleeping tablets aren't working. Really hoping tonight i get some better sleep. Been trying to get some kip today but i keep on having jerks every 30 seconds. I'm guessing I'm so bad with the symptoms because I'm so tired

  • Could be side effect of drug. Read insert that comes with meds you are on .

  • I can only recommend you go back to your doctor again. ask to be referred to a neurologist, if you think you are not getting enough help from your GP.

  • Please see my previous post.

    Also, check with doctors about changing your sleeping meds.

    You might go to drugstore and try OTC pain relief cream.

    See my previous post, I have given name of product that really works and will give you relief almost immediately !

  • 1mg patch might not be enough. Try doubling it. I have taken up to 4mg. Try rubbing your legs with lavender oil. Also if your magnesium level is low you can buy a liquid form to rub your legs with. Apparently this is better than taking tablets. Have you had your iron levels checked? Low iron is another known cause of RLS

  • I had a blood test in January. They said my iron levels were 43 which is normal. 2nd day of the 1mg of rotigotine and although i managed to sleep the full night, I've woken up like i haven't slept at all. Mouth is SO dry as well

  • Have you had a sleep study done..? waking up and feeling like you havent slept means you could have some thing else going in, maybe PLMD Periodic Limb Movement Disorder, means kicking and moving in your sleep and you dont know you are kicking and moving.

  • I recorded my sleep a few weeks back that showed i was moving my lower part of my body all the time and twitching my foot. Showed it to the GP and she didn't have a clue. Only gave me the rotigotine after i studied on here. I'm struggling so much and now it's moved to my arms. I thought RLS was meant to be a slow progressive illness and this is all happening within the space of weeks/months? I'm only 25 :s

  • I went to a sleep specialist and he recommended that my iron levels should be raised to at least 70 (I was about 35) The doc prescribed sodium feredetate about 6 months ago and my iron levels have risen but not yet up to 70. However, I do feel I'm getting some benefit and have not had to go onto a higher dose of rotigatine (I'm on 2mg patch) and use magnesium spray on my legs. Can't really help anyone re. Sleep. I'm taking temazipan but they don't do a lot for me and I usually only manage 4 or 5 hours sleep and feel constantly exhausted and would be happy to have anyone's tips (I have tried zopiclone and they don't work either!)

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