Sorry this post isn't exactly how I wanted it to be. Its been a rough week and a humdinger of a migraine and recovery from it have hampered my blogging. So the post isn't completely polished but I hope its of some use to you.
I would just like to do a quick shout out to George Barron who is the author of www.myastheniablog.com, who kindly commented on my post about technical difficulties and has a link to my blog from his site. For those of you with MG his blog contains great information regarding medical studies and peoples stories about life with MG. Its well worth taking a look.
I've been chatting about Chronic pain in my last few posts and suddenly I became aware that some of my readers may not know what the difference is between acute pain and chronic pain. Don't worry you aren't alone! I had to look it up myself to ensure that I had it right in my own head! My basic assumption was Chronic pain was something you had for a long time not related to any specific injury. I struggled when it came to acute pain so I did a bit of research.
This website has a great explanation of Chronic pain v acute pain
So acute pain normally happens suddenly like stubbing your toe ( happens quickly and the pain subsides relatively quickly as long as you haven't broken something), after surgery, dental work, etc. By calling it "acute pain" doesn't diminish its severity, broken bones hurt, post operative wounds hurt. Its just acute pain lasts for a period of hours / weeks / months, up to depending on whose article / research you read 6 months.
When the pain you suffer from is moved from the acute pain status to chronic pain status, it again depends on what sites you read / what research you've consulted and not forgetting when your doctor changes its classification. Chronic pain is usually diagnosed after 6-12 months. Long after an original injury or source of the pain should have healed. I've had back pain since I was 18 years old. This is classed as chronic pain, many years have passed since the original injury but the pain has not gone.
My chronic pain wonders up and down the pain scale. I am never in a position where I have no pain. On a good day it can be around a 2 or a 3. On a bad day it can be a 7 or an 8. There is never a day without pain and the same goes for nights.
I always find the pain scale quite inadequate to deal with describing pain. The language doctors use to describe pain is also quite confusing to me. They use words like is it dull, sharp, burning, stabbing. I remember the look of amusement on a junior doctors face when I told her my abdominal pain felt like I had swallowed a gorse bush.
The link between chronic pain and poor quality of sleep is well documented with many scholarly papers written on the subject. There are research trials taking place currently looking at using cognitive behavioural therapy to help people manage their pain and thus help them sleep.
I'm in favour of anything that helps chronic sufferers sleep better. Without sleep pain seems to intensify, we can become moody, emotional and function poorly during the day. The more sleep we don't get the worse we feel, a vicious never ending cycle.
I do have a problem with CBT being talked about as the great cure all. I found CBT very helpful when I suffered a major depressive episode many years ago, it helped me rationalise my feelings. I'm sceptical of its benefits when used with chronic pain. To me its like teaching Grannie how to suck eggs. If chronic pain sufferers haven't already developed their own coping strategies how the hell are they managing to function? Also how many of these researchers live with chronic pain, how do they understand what we go through every day and night? CBT has its uses but to me it smacks of "pain is all in the mind". Too many of us with chronic pain have been told "your pain can't be that bad, your smiling and talking" or " we can't find anything wrong with you" or " your pain can't be that bad". Adding a referral for CBT into the mix can make the sufferer suspicious that yet again they are being told their pain is in their head and its all "mind over matter".
Chronic pain sufferers use their minds throughout the day to distract themselves from their pain its a full time occupation. Which is why I think the nights are hard for us, there aren't the things going on at night as there are during the day. At night we are left alone with our pain. It either stops you going to sleep or wakes you up from it.
I don't have any magic cures or suggestions to help you. I really wish I did as I would like to get a decent nights sleep. Its important to remember when you suffer with chronic pain / sleep deprivation or both that you aren't alone. Seek support from anywhere you can, friends, family, medical professionals or the internet. There are some great support networks out there with people going through the same things you are. If you are in pain speak up don't suffer in silence!