My Weird Pain, Part Two

After breaking my arm as a child, it looked like I simply had a high pain tolerance. (If you havent already done so, you might want to read part 1 here.). As I got older, it seemed to normalize. In many ways, it seemed like I was actually ‘too‘ sensitive to pain. I’d had some ‘minor’ injuries that seemed to cause more lingering pain than one would expect, given the initial injury. I’ve never been able to ‘mesh’ my sensations with what I was told by doctors.
Last winter I went to see a rheumatologist about my joints, hoping that an official diagnosis of EDS would help to convince the allergists that I wasn’t nuts. It turned out to be more revealing than I ever thought.
This rheumatologist had my hand, was manipulating the joints, feeling what was going on with it. She gasped, and acted like my hand was a porcelain grenade, quickly setting it down. “Are you okay!?” she asked, wide-eyed.
“Uh, yeah…”
“How!… Doesn’t that hurt!?!”
“Doesn’t what hurt?” (there’s that ‘whatchu talkin’ about Willis?’ face again.)
“No WAY! It doesn’t hurt when I do this?” She moved one of the bones in my hand very gingerly.
“I’m guessing it’s supposed to?”
“That bone isn’t seated in its joint. It’s floating free! It is not supposed to be able to move that way! I’ve been trying to figure out why you aren’t dislocating your joints all the time. You are dislocating them. It just doesn’t hurt!”.
It was the missing piece. Suddenly, it all made sense. There had been so many times that I had doctors telling me that I can’t have done what I said had happened, that if it didn’t hurt, it wasnt a problem, that I was being a wimp to still be complaining of it. It has been stunning to revisit my history with a different lens.

A perfect example of why that was such a problem was when I dislocated my shoulder on the first day of a five day canoe trip. I over-extended my arm, and the paddle caught the water the wrong way, and out my shoulder popped. I got it back in most of the way, and we were within sight of our campsite. When I got there I pushed my shoulder against a tree, and in it went the rest of the way. I was 15, and I desperately wanted to become a CIT (counselor in training) the following year. The director had expressed concern that I was ‘always sick’. So I didn’t tell the trip leader (which, of course, made me look like I was a whiner- unwilling to carry my load, literally. I was 15…wasn’t really thinking that one through). The initial dislocation didn’t hurt, but it was definitley not a good plan to ignore it. Even thinking about it now makes me cringe. Solo portaging a canoe on a shoulder I dislocated the day before is a really bad idea.  With compensating, everything trying to hold me together, I trashed it.  The ensuing inflammation and disfunction most definitely hurt. (Still does, 30 years later). At the time, it didnt seem to be healing as one would have expected, so my doc sent me to see an orthopedic specialist. He said that I couldn’t possibly have dislocated it. It would have hurt a LOT more, and people don’t dislocate their shoulders on an awkward paddle twist, and even if they could, nobody can get their own shoulder back in unless it’s a matter of survival. I must have separated it, it was surprising that it was still so bothersome.

Or not.

That pattern has repeated over and over again in my life. “You can’t possibly have…”. I never really believed what they said, but I accepted it because I didn’t have a lot of other options. I learned to tailor what I said to doctors, they wouldn’t believe me if I told them the real story, so I amended them to make things easier. I’ve always ta. I believed that my pain tolerance was very low, because I had all sorts of   lingering pain from minor ‘sprains’ and ‘pulled muscles’. I thought I was a wimp, to be frank.

A few weeks after I saw the rheumatologist this past winter, I was getting out a bit more. I was in a group, run by my internal medicine specialist, learning about pacing for people with fibromyalgia, CFS, etc.. (It was much better than I had expected, I was actually really enjoying it, but it was just too much for me at the time.). We were going to do a breathing exercise. He told us to put out arms behind our chair backs. And out went my shoulder- the one I had never dislocated before. It didn’t hurt. I couldn’t move my arm at all, so I used my other arm to rotate it, which got it halfway in. Then I leaned forward with my elbow on my knee. Thunk, the rest of the way back in. It didn’t even occur to me that, um, maybe it would have been a good idea to mention it to my doctor at the time (ooops). About 6 hours later it hurt like stink. It’s still not quite right. Understandable if I dislocated it, entirely wimpy if I ‘tweaked’ it. When it comes to positional joint pain, I don’t have a high pain tolerance or a low pain tolerance. It’s simply not there.

I don’t yet have a good explanation for what exactly my body is doing. I haven’t met anybody in person or in the online MCAS groups who has pain (or, rather, lacks pain)like this. I do know that there are nerves whose  primary purpose is to tell us what position our joints are in. Mine work just fine. I don’t have a lack of sensation- I know when a joint is out, and my body registers where my body is in space. (Kinda hard to walk without that feedback…). I most definitely feel pain, including a LOT of joint pain. As is quite normal,  in some places I have a low pain tolerance (I don’t do well with tummy pain) and reasonably high tolerance with what I call ‘structural’ pain. I have a few ideas, but none seem to quite cover it yet. Im seeing the rheumatologist next week, I m hoping she can help shed some light on it.  Emotionally, understanding it has helped. (I knew I was right, you, you, you bozos!). More importantly, it has given me the confidence to do things that my doctors wouldn’t recommend initially.

If I override or ignore what my body tells me, I regret it. This condition is different for every patient; what works for one can do someone else in. Our bodies can do some stunningly paradoxical things. There is no ‘formula’ for tackling MCAS. We are encouraged to do mindfulness, but then when we say “My body is telling me….” we’re told we are wrong, or we can’t possibly sense that, or we are making stuff up, or we’re hysterical. (Sigh…). Hear that often enough, you begin to mistrust yourself. Either all those doctors had it wrong, or I did. When I am able to trust my body, (and suppress my natural tendency to avoid conflict), and say “I think this is what I need to do. I can’t explain why, but trust me, I know what is up.”, it usually works, and never makes me sicker. (Told you so).

Though my pain experience is one hell of an extreme example, it highlights what I think is an essential component in treating MCAS. A cardinal rule, as it were:

The most reliable source of information about managing my MCAS is my body.


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