Elizabeth wants to know about my pain. I think the woman is very weird for asking, but since it’s just about all I can think about today, I will tell her about it. I feel bad writing about pain here, which is why I usually try not to, because I really don’t have the pain levels that I know a lot of people live with. For me, it would be like talking about days when I feel a bit down as ‘depression’ – I don’t do it, because it would irritate people with real, current mental illness. But I’ve had a request, so I shall comply. Everyone else, feel free not to read – this is only going to be boring with a touch of self-pity.
EDS pain is apparently a bit unusual (I wouldn’t know – it’s the only type of pain I really know about) in that it’s both chronic and acute, and can come from several different sources. For me, the most common of these is joint pain, but if I understand correctly, it will be different for every EDSer. My joint pain then comes in two flavours. There’s the sudden, pretty awful shooting pain that tells me I’ve either subluxed something or hyperextended it too far. That happens a lot. And there’s the all-day ache where I’ve overused something, or where a subluxation has hurt it. My shoulder was doing this yesterday from sleeping funny on it. My knees do a fun combination of these two a LOT, often when I’m trying to sleep. Gets boring. Cold affects this. I wear a lot of clothes and have the heating up higher than most people (yes, I know it’s not good for the environment). Too much movement affects it too. Wheelchair is about the only thing that helps.
Then there’s the muscle pain that I think of as Fibromyalgia pain because it’s related to that particular diagnosis. Unlike the other types of pain, which I had all my life but which have got worse over the last few years, this arrived really suddenly when I had the post-viral thing that kicked everything else into a higher gear. This is a bad, constant ache that feels like the muscle sheath is being *pulled* very tight all the time. It can get really distracting. I get a lot less in my upper body than I used to, thanks to Lyrica (my miracle drug), but my legs can get quite bad this way. Recently they’ve been killing me. I do not know why. There’s evidence to suggest that this part of my pain is mainly neurological, as FMS has the effect of making people feel this sort of pain more. So when my joints hyperextend, as they’ve been doing for 29 years or so, the cumulative effect on my muscles is then felt more strongly because my brain is confused by it all. That’s my interpretation of the theories, anyway. Heat packs, hot baths etc help this. Cold makes it intolerable.
Finally there’s the ‘miscellanous‘ EDS-related pain. Headaches are in one category. Nearly-daily migraines are currently driving me completely round the bend, mainly because, if I have even a hint of a migraine headache, I can’t take my painkillers for joint stuff, or the migraine will be truly horrendous and I’ll be throwing up for hours. (This is why I was hoping the pain specialist would give me some solutions that would work for both general pain and migraines. She did not. She is stupid.) Another category is nerve pain. I used to get this more before I was taking the Lyrica. Tends to be shooting pain down a nerve that I’ve either trapped or irritated. For this reason TENS machines are utterly useless to me (irritate the nerves further) and acupunture hasn’t always been a good idea (although I plan to give this another try, as I’ve been referred for a course on the NHS).
Then, as I was attempting to explain to Esther last night, there’s the stuff that isn’t quite about pain but is somewhat related to it. A lot of my mobility issues are about this sort of thing. My joints are weak and ‘go’ underneath me rather regularly and unpredictably. I have poor balance. And there’s the fatigue, which I believe is related to my rubbish autonomic nervous systems (basically, EDS-related heart problems that fall just under the radar. I need tests soon). And other related things that I could explain if I had more time, and if anyone reading this was remotely interested. But I doubt anyone will be.
There you are. I did warn you that was going to be dull. Happy Sunday, all. I’m off to a Quaker meeting. Cool.