(There is another symptom that I'm saving for last in this countdown because it also qualifies as THE WORST, even though I know I can't say two very different things are both equally the worst. Except yes I can because this is my blog and I can do whatever I want. Itching is THE WORST in terms of the actual experience of the symptom when it's happening and the other symptom is THE WORST primarily because of its unending duration.)
So when I say I've experienced itching from MS, what exactly do I mean? This is one of the symptoms that is so very hard to describe to someone who has not experienced it. You know the feeling when you have a bug bite or a rash or something like that? Itchy, but you maybe get at least a temporary hit of relief when you scratch or apply an anti-itch cream, yes? This is not like that. How it's different:
- My MS itching - or pruritis, to use another science-y word - always covers a much larger surface area than a bug bite. Typically it's been the majority of a limb. Most of an arm or leg. Once, it's even occurred on most of an arm and most of a leg at the same time. That's a lot of surface area.
- It's about 1,000 times as intense as a bug bite itch. You can literally think of nothing else.
- Scratching doesn't even give a temporary hit of relief. Nada. Not that that stops me from trying. The itch has nothing whatsoever to do with the surface of my skin, like it does with a bite or a rash or sunburn or being tickled.
- It generally lasts for 30 minutes to an hour or sometimes even longer, at that same level of crazy high intensity.
This experience literally makes me feel like I am losing my mind. When it happens, I always get to a point where I feel like I truly cannot stand it for one more minute. I'm at the edge of a line where I feel like I need to go to the E.R. and ask them to knock me out or something. And I think I've mentioned once or twice on here how I feel about going to the doctor at all, right? So for me to even have that thought means this had to have been insanely bad.
How often have I experienced this? Probably at least 50 times. It happened a lot during my first year and has happened all too often in the years since. It was often the first warning sign of a big, bad relapse coming at me. The itch of doom came, and 24 hours later my legs had trouble with the walking thing. In recent years, though, it has sometimes happened (as recently as 10 days ago) on its own and not necessarily as part of a big relapse.
This was another symptom early on that I had all kinds of funny rationalizing about. It first came in my right hand and forearm, and it seemed to often happen while I was playing my horn (a brass instrument where you stick your right hand into the bell) so I was convinced I had suddenly developed a metal allergy. Naturally, I did a lot of research and talked to other horn players who I knew had this kind of allergy. The fact that their experience of it sounded nothing like mine did not deter from being convinced that this was what was going on.
How do I act when this is going on? I kind of lose my mind. I do scratch, maniacally, even though it is not helping and I know it won't. In the early days, I would turn the faucet on way too hot and hold my arm under it. Knowing the effects of heat on my MS, I now know how very dumb this one was, and I don't do it anymore. Weirdly, though, it kind of worked in that it tore my mind away temporarily at least from its frantic scream about the itch. Distraction works, but only in this kind of extreme way and not so much in a watch-this-cute-puppy-video way. [Sudden lightbulb idea - next time, I should try ice packs!] Now, I sometimes violently whack my arm against furniture even though I know this is probably not helpful. I lay on top of it with all of my weight. This last one seems to be one of the more helpful coping methods, probably because, like with the hot water, it distracts and confuses my brain. It only really works when the itch is in my arm, though, not so much when the itch is in my leg. Mostly, though, I just wait not at all patiently for it to pass. This usually occurs within an hour, but I've had a few 2-hour doozies.
How do I act when this is going on? I kind of lose my mind. I do scratch, maniacally, even though it is not helping and I know it won't. In the early days, I would turn the faucet on way too hot and hold my arm under it. Knowing the effects of heat on my MS, I now know how very dumb this one was, and I don't do it anymore. Weirdly, though, it kind of worked in that it tore my mind away temporarily at least from its frantic scream about the itch. Distraction works, but only in this kind of extreme way and not so much in a watch-this-cute-puppy-video way. [Sudden lightbulb idea - next time, I should try ice packs!] Now, I sometimes violently whack my arm against furniture even though I know this is probably not helpful. I lay on top of it with all of my weight. This last one seems to be one of the more helpful coping methods, probably because, like with the hot water, it distracts and confuses my brain. It only really works when the itch is in my arm, though, not so much when the itch is in my leg. Mostly, though, I just wait not at all patiently for it to pass. This usually occurs within an hour, but I've had a few 2-hour doozies.
I just asked my mom what I'm like when this is going on, as she has seen it many times now. She says that I get a particular look on my face, that it drives me crazy, and it's clearly all I can think about it. That last part is so dead on. There is literally nothing else I can think about when this is happening. The few times where it has happened in public or around people other than those I know I can go "crazy" around, it's been a war inside myself to keep it together until I can break away.
So yes, itching is THE WORST of my MS symptoms. I would not wish it on my worst enemy.
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