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Blog post by Lara Compton on Pain Management

Posted By HMSA Social Media Coordinator, August 25, 2017

I have hEDS, and despite having gained my diagnosis in 1999, it’s taken me a long time to get a grip on pain management, and I’ll be honest, I still don’t always get it right… But, part of effective pain management for me, has been to ensure I’m kinder to myself in all ways, particularly if I don’t make the correct decision at times!

So, how do I manage my pain? Of course there are some pain killers in there, but they’ve never really worked too well, and I get awful side effects.

Heat and ice work well, and you gradually learn along the way which is needed at what time.

Taping can help loads – but I learnt the hard way that your body can become over-reliant on it. So now I try to only tape for part of a day, partly to give my skin a break too. If a joint hasn’t started to become more stable within a week or so, I’d start to rethink the tape.

I have specialist massages with a lady who has lots of experience with hypermobility (although we still laugh about the first time she massaged me, and my shoulder subluxed afterwards!) This is one of the biggest pain relievers for me.

Lastly… We move on to the biggest element of pain management in hEDS. Pacing. I’m still not a pacing expert (hence the incorrect decisions at times!) but now I’m finally pacing myself properly, I am so much happier. I am enjoying my life so much more. There are still bad days/weeks, but I know they’ll pass, providing I pace!

I like The Spoon Theory a lot, but still think others find the concept hard. I recently wrote an article on The Mighty, where I described my pain levels like a bank overdraft. In a ideal world, I wouldn’t be into my overdraft at all, but most days I am. Some days, I wake up way over my overdraft. Pacing is all about decreasing your overdraft level. It is much better for me to stay at a constant 30% overdrawn, than to spike up and down, and end up 330% overdrawn. Life at 30% gives me a much better quality of life. You never know, one day, we might even end up out of that overdraft into positive figures!

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