Diary of a week with RLS - what I am taking to show my GP next week
Diary snapshot of a week in my life living with RLS - apologies for miss spellings!
Weekend of 26th/27th January – Saturday suffered really badly with Labrynthitus and couldn’t do much. Very tired all day but each time tried to doze RLS kicked in and stopped me sleeping. Bad night on Saturday night but did get about 4 hrs sleep. Got up about 7 am on Sunday because of twitching. (both days took normal meds ie 3 pramipexole at about 7pm)
L/itus still bad, tried to do some decorating but had to give in. Still unable to catnap cause of RLS. Sunday night got about 5 hrs broken sleep.
Work on Monday but went to doctors mid morning about L/itus and saw locum. Discussed medication for RLS ie pramipexole and dose rates. He then did test and confirmed L/itus. Gave me medication for nausea. Took meds on Monday and for the first time in months felt on top of the world that evening! Took 3 tabs at 7.30pm.
Twitching not apparent until bed time on Monday but far more severe than normal. On a scale of 1 to 10, I am about 6 normally but I would say about 8 on Monday night. Gave up trying to sleep and carried on decorating for rest of night until went to work at 6.30am!
My wife researched meds given for L/itus and they are Dopamine antagonists and react with pramipexole which is a Dopamine agonist. They make the RLS much much worse apparently and I proved this was so without knowing why until the following morning!
Worked Tuesday although extremely tired. Managed to go out in the evening for 3 hrs to see friends and went to bed at 11 pm. As usual took 3 tabs at about 7.30pm.
Didn’t get to sleep until 4am because of fairly violent twitching and that was on the sofa downstairs. Went to work about 9am ish.
Wednesday 30th Jan – worked in office but very tired. Lunchtime went home to try to sleep but RLS wouldn’t allow it so went back to work. Finished work at 6pm and tried to sleep early evening but no joy. Took 2 tabs 4pm and another 2 at 7pm to see if that would help but no . Went to bed at 10.30pm and set the alarm for 4.30am to travel to Dartford for 8am. I immediately set in with twitching then body convulsions and got up again at 11.15pm. Watched telly till 12 and tried again but at 1am gave up and got up. At 1.15am decided to get dressed and leave to drive to Dartford, stopping when I felt tired. This I did 3 times on the journey but RLS would not let me cat nap in the car so arrived in Dartford about 7.15am having not slept at all that night.
Managed to carry out visits in Dartford, Romford and Hendon during Thursday and start to drive home in the afternoon. Had to stop in services before I killed myself and others and did actually sleep for about 45 mins, got home at 6.30pm.
Finally on Thursday night I slept! 11.30 pm until about 8.30 am only waking a couple of times. It was an amazing feeling, something 'normal' people take for granted!Friday daytime in the office was ok, finished work though at 7.30pm.
Bedtime at 10.30pm but bad bad twitching immediately set in and here I am at 3.30am writing this and my legs are still going mad and my whole body feels like it is possessed. No sleep again tonight I am guessing. Not sure I can take a lot more of this.