I live with chronic pain. I have done for most of my life, although members of the medical profession have not always acknowledged the fact. According the medical books people who have Myotonia Congenita are not supposed to be in pain, but I did not write those academic tomes and, from what I have seen, many of the authors did not suffer from Myotonia Congenita either.
Chronic pain is not a single pain that lasts a long time, it is pain suffered over a pro-longed period. The length of time for definition purposes vary from 3 to 6 months but recurring pain rather than one long bout is accepted. I get frequently recurring pain from in my muscles from cramp, strains, and tears. As my muscles do not relax normally after any kind of exertion they are prone to this kind of damage. I can suffer injuries more often related to athletes than disabled people, I have every sympathy for any footballer who pulls their hamstring, for instance, because I did that a few weeks ago just getting out of a chair.
Cramp is without doubt the worst pain to experience and, as you probably know, it is not reserved to just MC sufferers either. Most people have experienced cramp at one or more points in their lives. Cramp results from an involuntary contraction of the muscle or muscles, now imagine that in a musculature that cannot relax immediately after the contraction? In normal situations this causes a stiffening in the muscle itself but when cramp is being experienced it results in a prolongation of the episode and boy does it hurt.
Earlier this week I moved in my sleep and damaged the muscles in my neck and left shoulder. Throughout that day I had to endure considerable discomfort as the level of pain grew and I had to rely on pain-killers. 4 days later and my neck still feels sore, then it was the turn of my little finger. I have no idea why but it became suddenly very stiff and became swollen. Okay, it is just my little finger but you never realise who much you use something until you suddenly cannot, and then there was the pain. Yet more pain.
I have heard of some people becoming addicted to pain but I cannot imagine it myself. I cannot count how many individual bouts of pain I suffer each day but I do not enjoy a single one of them. I have to admit that mostly they are just spasms, uncomfortable muscle twitches. Sometimes I think my muscles trap nerves and that causes a most unusual and discomforting experience. Occasionally this also induces a very high level of short lived pain, a bit like an electric shock I suppose. I get aches as well, especially in my legs, which might have something to do with impaired circulation. One of the worst pains occurs in my lower spine, a result, I believe, of the Spina Bifida. This pain is very different to those that are muscle related. Sometimes it just comes on, very quickly and without any warning. Other times it builds from a dull ache. However it begins it always builds to become very uncomfortable, sometimes even distressing. On a couple of occasions I have managed to walk it off, or even massaged it away. On some occasions it has built to a point where the pain becomes totally debilitating. More than once I have had to excuse myself from a meal I have just sat down to because the pain has quickly become too much.
I am not a hero. I am not suffering with dignity. I do not like my situation and I am not looking for pity or sympathy, just understanding. That seems to be the biggest demand that I can make of the medical profession, to understand that I am in pain, not constant but certainly recurring on a very regular basis. I have been denied pain-killers out of fear of addiction and I understand the reasoning but no one has offered me an alternative. I did try to access a pain management clinic but they would not accept me because I am under the care of a specialist. That is true but the said doctor does not specialise in pain, in fact he does not even specialise in Myotonia Congenita! He’s a neurologist and I got passed to him because there was no one else available. He is a good doctor and has done a lot for me but he cannot do much about the pain.
It is down to me to develop coping strategies to deal with the pain. Mostly I just exhort appropriate sounds like “ouch!” “ooooo!” and “aahhh!”. Occasionally I use profanity as well, which I am sure is understandable. Mostly I just grit my teeth, especially in my sleep my dentist tells me. Hopefully next week will be better for me than the one that has just gone. Hopefully it will be more of a case of “oh that stings!” rather than something more prosaic!