When I first saw my doctor with what I thought could be EM my feet were not in the throes of a flare. He prescribed 10mg Amitriptyline at night to help with the severe lack of sleep I told hime I was experiencing. These helped a little giving me an average of 4 hours sleep every 3 or 4 nights which was better than nothing. The side effects were not too bad - a very dry mouth and a bit la la land in the morning. I wasn't able to drive until later in the day.
I reported back to the doctor and this time warmed my feet to show him what was happening. He prescribed Lyrica (1 x 25 mg twice daily) based on information he looked up on the internet. I stopped the Amitriptyline and started the Lyrica. They had no real effect at easing the symptoms or with aiding sleep. In fact the side effects were pretty bad and the swelling in my legs and feet that arrived when I started taking them is still bothersome. After 4 weeks I went back to see the doctor and he referred me to Rheumatology at my local hospital. I can't get an appointment until late January 2012. In the meantime I just had to get on with it as he was reluctant to increase the dose of Lyrica which I decided to discontinue.
After a couple of weeks of sheer misery I started back on the Amitriptyline as the odd few hours sleep was better than no sleep at all. The flares were getting more and more frequent and I was at the end of my tether. In desperation I went back to the doctor again and he was at a loss at what to do for me and suggested I upped the nightime dose of Amitriptyline to 20mg at night.
Oh, joy!!! I slept the night through and the next and the next. In fact, apart from one bad night with the restless leg syndrome I have always suffered with I have slept slept slept at night for the last eight days.
I did have a lot of pain (shooting and stabbing on standing when I first got out of bed or after sitting for a while but that is easing now.
I haven't had a flare for a week and I put the fans away in the cupboard today they were just gathering dust.
The tingling, pins and needles and itching have dulled right down to a bearable level. The blisters have gone and today I wore socks and slippers all day. Had to cut the tops out of the slippers due to the oedema. My left foot has warmed up while I am typing this but thats all it is - just warm. Right foot is cold despite the room is warm and socks are on.
One odd feeling is that my feet feel a bit like they are being squeezed - a bit like wearing compression stockings on long haul flights or tight shoes.
The blistering has stopped but where some had popped I have ulcers as the oedema prevented them from healing. I am having them treated.
I have felt rather out of the loop for a number of days due to the increased dose but beginning to feel more human now.
I can only put this change in my symptoms down to the Amitriptyline and I am reluctant to reduce the dose to see if they return. Will have to report back to the doctor as I shall need another prescription next week.
The big question is, why is this medication working for me when it might not for others. Why did the Lyrica not work for me when for others it does? How can two little blue pills make such a difference?
I hope I'm not dreaming and this really is happening. Just wish it could work for everyone else.
I felt really guilty writing this as I know so many of you have no respite from EM at all.
No doubt with my luck I will come down to earth with a great big thump soon!