There never seems to be a reason, something that you can pin a change to, but I know in the last days or maybe even weeks, that although my pain levels are steady the other symptoms, sensations have increased. I wrote the other day how my hands are burning and there are lightening sharp shards of pain dancing through them, I don’t know why I just wrote about my hands, maybe because well they are the part of me that moves the most these days. The fact is the level of tingling, pins and needles, plus the worst of all for me, burning has returned in my feet and at times in various parts of my body. I have been luck for a while now that they were very much transient symptoms, years ago they were the first symptoms that told me something had changed and pushed me to insisting I was going to have a diagnosis, a name to what was happening to me. So to find they have returned again and in such a constant form is not just annoying but also tinged with a little worry.
Finding your skin burning constantly, is really such a strange sensation if you have never had it before, unlike pins and needles, or even tingling that all of us have had at some time or other, I for one had never felt anything like it. There is only one word for it and that is burning, but for me it is nothing like the pain left once you have burned yourself, it’s closer to the burning you would get from really bad sunburn, or even the sensation that playing for too long in the snow leaves, but still not exactly the same. There is an intensity about it that is actually destressing as there is absolutely no way of relieving it, no creams or application of anything cold or even hot ever makes the slightest difference, it is just there. I actually remember clearly the day I decided I had had enough and the doctors were going to listen, I was sat on the bus heading to work, both my feet were held off the floor as just touching them to cold metal floor was too painful. I had my left arm cradled by my right trying to relieve the pain, my head was leaning on the window and I felt a tear on my cheek, I felt so pathetic. I sat there just wishing the pain would go and that I could just go home to my bed, how was I supposed to work feeling like that, but I had felt just like that for weeks, no break, no period so bad that I couldn’t function as I had had in the past, but strangely the unending feeling of inability to everything, was worse. I knew at that second that I had to try, just once more as living like that with no answers, was just too much. I have the answers but that is about all that has changed, my feet still don’t want to be on the floor.
For years now these sort of pains have been held in check, I have been taking amitriptyline for day they diagnosed my Fibro, a diagnosis that came before the MS, both cause this sort of thing so it’s hard to know which is which. There appears to be little that they can do about it, it is caused by the nerves miss firing and just doesn’t seem to respond to treatment like other pains, as trust me even pins and needles can become painful, the longer you have it, the bigger those pins and needles become. It isn’t even as simple as raising the dose of amitriptyline as I am already on 15mls at night and they say that increasing it seldom helps at all, being me I would still like to try, as everybody is different.
Yesterday was one of those that I just never managed to catch up with myself, the whole day was running late and stayed that way. I should have been sorting through the shopping at this point, but I never actually found the time to put the order in, I still haven’t, but I know I have to find time today. I know it sounds silly from someone who is at home all the time, to not have the time to do something so simple, but it happens all to often, the day just vanishes and I have no excuse for it at all. I do seem to be sitting doing nothing more frequently, I just seem to slip into a state of none activity, I’m sat staring at the computer screen, doing nothing, not reading or typing just staring in silence. I don’t even seem to have any thoughts going on to fill that time, just silence. Then suddenly I click back into action, but I have forgotten what I was doing and have to double check, reread or what ever, taking more time before I can move on. It’s almost like being asleep with my eyes open, if that makes any sense to anyone, because it doesn’t to me.
18/02/12 Ticking the boxes > http://bit.ly/1e3B6mO
Oh nerve pain there really isn’t any way to describe that sensation, you really have to live it, but it’s not something either that you would wish on anybody so they know how it feels, it truly can be hellish. I too had a day after living with it for weeks where I couldn’t take it any more I went to the GP hell bent on getting answers, there had to be some test it would show up on? right there and then when it was flaring every nerve in my body to the point I was painfully aware of every surface of my being. But no, no test, I was prescribed Lyrica and it worked (I have a severe sensitivity to amitriptyline). Oh there are still days when the pain breaks through any attempt to control it but those days are not the norm so can be dealt with. I take the time where I slip into doing nothing as a signal to rest instead of snapping back to action I spend some time using relaxation techniques and mindfulness, everything gets done in its own time. Take care and rest easy. Siobhán