Fed up

Hi everyone.

Had last relapse about 3 1/2 years ago which affected my left-hand side, At the end of last year I started getting an annoying feeling on my left arm and sometimes my left leg. If I try and ignore it I get to the point I have to shake the limb it got to a point it was affecting my sleep until I found that if it was my arm I could ly on it and I didn’t get the feeling if it was my legs I just had to try and get to sleep.When I was at my consultant in August he proscribed Pregabalin to take as and when I needed them as the strange thing was it doesn’t affect me at all during the day. I only felt it in the evening once I had sat down and even then it didnt do it every night or started when I went to bed ???.

I ended up taking every night and sometimes it bothered me and sometimes it didn’t so I don’t really know if they were working. I have decided to ween myself off them and see what happens. I do have an appointment with the doctor this week to get an appointment back with my consultant.

Has anyone else had this same symptom and found out what causes it and keeps it at bay. And just to make it more confusing I was away on business last month and was working all day and then was out with the colleagues till late and I just went back to my room and straight to bed 2 nights in the row and it was no problem.

Any help would be great.


hi malcy

my symptoms are their own version of strange.

however i understand why you wanted to come off pregablin.

i was taking 4 neuropathic painkillers but the level of pain remained the same.

so i took myself off gabapentin, tizanidine and pregablin, just leaving amitriptyline.

the level of pain stayed the same.

i have just learned to live with it and at least i no longer rattle with all the pills i was popping.

hope you find a way that works for you.

carole x

I know what it’s like living with pain, but mine isn’t caused by my MS. I suffer from trochanteric bursitis. Some days it doesn’t cause too much trouble. Other days it seems to resist whatever painkillers I use to treat it. Today is one of those days. So far I’ve tried ibuprofen and low strength cocodamol. Neither has made much difference. An hour from now I’ll be able to take high strength cocodamol. If that doesn’t work, I’ll give up and retreat to bed.

I hope you find something that will work on whatever is causing your problems, Malcy.

My dead arm woke me up this morning, so did my toe which decided it was stuck fast and not working. My fault, I enjoyed the wonder of seeing a grandchild yesterday so today I will pay bucket loads. I have kept the house warm, loaded up the bed with fluffy things, taken my first painkiller of the day and will follow with another one and a cup of tea in a few minutes. They make all my food taste like painkillers but, without them this morning, I would be unable to get any limbs going. They just take the edge off so I can put socks on or get dressed and move about. Once they kick in , the day tends to get better. I don’t mind taking mine, they make my life so much better however I am very sparce with gabapentin that seems to make me fat just by looking at the packet. My latest medicine is eye and day ointment and creams as my eyes have completely dried out and without the lotions, each time I blink feels like someone rubbing sand against them. Hey ho, just another blasted annoying thing, today I laugh, tomorrow I shall probably get back to my usual swearing a lot.

Re the symptom, I have been forking out for a few months once a month, to the lady down the road who does massage. My head, neck and tightness in all limbs was very bad. She has started at the head, neck, then did feet and lower legs, last time she worked from my head down to my waist. Each time I feel weird after but it seems to have released the tight stupid, night symptoms that can be annoying. She is a sports masseuse and each time knows which bits are bad so can apply pressure or touch accordingly. It has been wonderful. That ‘annoying’ feeling is the one that makes me falter and fall over in the day, this has been slightly improved since the lady with the thumbs has been massaging. Next one is head, arms and hands then I leave it till next year as I stay away from most things in the winter when everyone is coughing. At home when I can, if my leg is numb and being really tight, I rub a Tahiti type of oil on my lower legs and feet then wrap them in a soft sock before I go to bed. It seems to help a bit although sometimes, I can see myself doing it but can’t actually feel my hands or feet at all!

Yes, long sleeps help me and I wake up feeling much better. I have also found for the annoying leg thing, that in the day I sometimes wear a martial arts sort of sock, goes up the ankle slightly, hole in the heel. It helps reduce that annoying ‘what the heck is my leg doing’ night thing.


i have only used tahini for making hummus!

hmm may try putting it on my feet.

somebody gave me some coco butter, it is rock solid but thinking of melting it and putting it on my feet.

wishing us all happy feet for christmas!

carole x

happy feet was that film about penguins!

Now you’re likely to have all sorts of posts about socks!! Oops, does this count?