Mystery pains

Whilst not a daily or probably even a weekly experience, it’s not uncommon for my son to get what we call Mystery Pains. They are a mystery, as as his parents, we can see no cause for them whatsoever. No redness, no lumps, no rashes, no symptoms discernible to us whatsoever. But they are definitely painful to him. And he seems to focus on them and make them worse, a bit like hyperventilating.

So, a couple of weeks ago we were woken by him coming into our bed practically screaming because of the unbearable itchiness that he felt that was so bad he clearly found it excruciatingly painful. We could see nothing.

It is really hard to know what to do at this point. When he was younger he suffered from small amounts of excema, and his sister still has flare ups, so we have a plethora of creams and lotions in the house designed to relieve itchy skin. Sometimes they work on Mystery Pains of an itch based type (which the Mystery Pains usually, but not invariably, are). However, often they provoke a reaction not dissimilar to putting vinegar on a cut (i.e. make things much worse). There seems to be no rhyme nor reason to which cream will do what when. So on that occasion we gave him antihistamine, because it is used for hayfever, insect bites and other such itchiness, so its appropriate, but mainly because it was the middle of the night and we know it also causes drowsiness.

This bedtime he had a flare up of Mystery Pain that had occurred earlier today and was described as a “sore bottom”. As it was the second incidence in a few hours, I thought there might be a physical underlying problem, so I gave him some Bepanthem, the magic cure all cream that I used when my daughter got bad nappy rash to apply himself.

Big mistake. It rendered him nearly hysterical with pain/discomfort and he could think of nothing else, which made it worse. I lay next to him, trying to talk calmly, to rub him, to encourage him to listen to the relaxation cd that was on and it was taking every ounce of my willpower not to get cross with him as he was so clearly winding himself up and making himself feel worse, but not deliberately so.

In the end I administered calpol, told him that it would take a few minutes to work and that if he was still in pain when the cd finished then he could come and find me. I went downstairs. My company did not seem to be helping him and I was afraid I was going to get cross if I stayed there much longer. I ate chocolate buttons and searched the internet for evidence/advice/insight of/about/for hyper sensitivity to pain in children with Autism Spectrum Conditions (the general opinion seems to be that people on the spectrum can be unaware of pain and not know they’re seriously ill (such as this post), but it is kind of mentioned that they can be feel sensory issues as pain too. I started writing this post. Then I got interrupted as he came downstairs.

Initially he seemed fine, then he remembered that he was in pain and started to verge on hysterical again. So I phoned a friend. For my sanity really (my husband is out so we can’t do our usual Tag Team parenting routing, where we swap over when we’re starting to get irritated). To help me not shout in frustration at him. And to distract him. We talked a bit, told her what we’d been doing in the past couple of weeks (lots), he seemed happy, then he remembered the pain (or maybe it came back, he did say it comes and goes, forgive me for being cynical but it’s half past 10 at night) and started looking like he was midlly hyperventilating again, so my friend suggested a heat pad, and I left him discussing if “because” was a suitable answer to a question (hint, he doesn’t think so) with her whilst I heated a wheat pad up and then I have given him antihistimine and tucked him back in bed with the heat pads and put the relaxation cd back on. Fingers crossed.

And it’s half past 10 and I haven’t even washed up after dinner.

I’m going to phone my friend again now and have a proper conversation. Assuming I don’t get interrupted again. If anyone has any experience of hypersensitivity to pain, itchiness, sensory issues, mystery pains, or knows of any resources or actual helpful techniques, I’d be interested to know. But mainly I’m putting this out there so that if someone else does a desperate search for similar reasons, that they might find out they’re not alone. Good luck to you. It will pass. Keep breathing.



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