It's been nearly 4 months since my last post & during that time my quality of life has continued to get worse as my pain has got stronger.
I've become very unsteady on my feet recently, especially on the stairs & this has led to a few nasty falls followed by trips to A&E, the worst of which left me with a dislocated shoulder & a fractured wrist.
These falls all take place when my pain is at its strongest & there are usually certain times in the day when this can happen. This is linked to what time I take my pain killers & if I have been moving my bad arm more than I should. My doctor asked me to explain to him what I think is making me fall because "pain doesn't push you down the stairs". I'm now going to try to explain it to you the same way that I explained it to him because whilst I was telling him, it suddenly started to make more sense to myself.
My pain seems to come in 3 different strengths. When I am having what I would call a 'good day' my pain score will be about 6/10, when I'm having a 'bad day' my pain will be around 7.5/10 & when I'm having a 'very bad day', which is happening a couple of times a week at the moment, my pain is at at 9/10. I don't really find these numbers very helpful because 7/10 for somebody with a chronic, long term pain condition will probably be far stronger than it would for a normal, healthy person with a normal pain threshold. Because of this, I wanted to find an easier to understand way of describing my pain which could also be linked to my falls so here goes.
Imagine that my pain is a little man living in my brain saying the word "PAIN" over & over again:
On a 'good day' he is just saying "PAIN" in a normal voice taking up about 1/3 of my brain power but I can try to overcome this by using the rest of my brain to keep me busy & concentrate on other things as well as using my spinal cord stimulator to try to mask some of the pain which is still left.
On a 'bad day' the pain is shouting in my head which uses up about 70% of my brain capacity. This doesn't leave much brain left to focus on anything else & my stimulator hasn't got enough power to overcome the pain at all. Because I can't focus on anything else, the pain stays strong but my concentration & balance weaken. It is at this point that I become more susceptible to tripping & falling, especially on the stairs.
Finally, on a 'very bad day' the pain is shouting & screaming in my head as loud as it can as well as using my brain like a bouncy castle, jumping & crashing around inside my head. On days like this my stimulator makes no difference at all & I only have about 10% of my brain power left. This is enough to keep me from seriously endangering myself but other than that, I will be either unconscious or walking around in a 'pain induced daze' unable to communicate properly or complete the most basic of tasks such as get dressed or eat my lunch. This is when most of my accidents occur.
After explaining the above to my doctors, they tell me that what I'm experiencing is very much like having mini strokes or TIA's & it's my brain's way of coping with the pain without causing any permanent damage. On one hand it is a relief to know that my brain isn't getting any more damaged but on the other hand, it means that until a 'cure' for CRPS can be found, I may live with this pain for another 40 years which I really don't think that I'll be able to manage.
If anybody else is experiencing anything like myself then please let me know because at the moment I feel like nobody else can understand what is happening to me & this makes me incredibly lonely.
