Thought I would do a quick personal post as I haven’t done one for a little while. Due to the hot weather we have had recently it has made a little problem of mine all the more uncomfortable. My legs and feet are always cold, as I live from bed they are normally under the covers, but my top half is nearly always hot! What’s that all about? Its extremely bizarre and a bit of a nightmare to manage. I am not joking when I say I can be dripping with sweat and have stone cold legs. I am guessing circulation may be one of the problems or perhaps some of the nerves problems down by L5/S1? Who knows, it could even be down to morphine dependency and the damage to the pituitary as that messes with the bodies thermostat at the best of times.

When I am out of bed I nearly always wear long johns. A good friend came round for a takeaway and a chat the other day, I took my morphine and had a nice time for a couple of hours. But I hadn’t put my long johns on, that night was terrible, I was up all night in pain. I couldn’t sleep because the pain was so bad I couldn’t actually keep still. Around 4am I took a hefty narcotic cocktail which finally put me out ending the misery. It had been a week since I last had a day out of bed but I was still “recovering” from that, perhaps I did it too soon or should have put my long johns on. To be honest its quickly becoming my number 1 mobility concern and need to think of a better solution, if I wear long johns to much I can get UTI’s which are not nice either. Oh and I forgot to mention on my first edition that it was one of the hottest days this year too when these happened!

Duloxetine is my little wonder drug though, before taking that I had the pain in my legs 90% of the time. Its like a crushing pain, as if your legs are in a high air pressure tank, its really bizzare. However overnight the first dose of Duloxetine flipped the odds and I was 90% pain free in my legs (well as far as that specific pain goes anyway). I always remembered my maternal grandad’s knees sounded like someone was scrunching paper all the time, my mum developed this in her 40’s and I developed it in my teens! Not much hope for me although x-rays have come back clear apart from
Osgood-Schlatter’s Disease as a teenager. Not much hope for those knees then!

It just reminded me of the pain and suffering a simple home visit can bring and the person visiting has no clue of the result, although I wouldn’t really want them to know and wouldn’t change a visit, maybe just my choice of Long Johns!

I would like to hear from anyone with similar problems, especially those in their 20’s or on the same medication.