A to Z of EDS: P is for Pain

Head pain, scalp pain, jaw pain, neck pain, shoulder pain, chest pain, back pain, stomach pain, gut pain, rectal pain, hip pain, arm pain, elbow pain, wrist pain, finger pain, palm pain, groin pain, period pain, leg pain, knee pain, shin pain, ankle pain, heel pain, sole pain, toe pain…

I’m sure I’ve left some out, but you get the message. EDS causes pain literally from your head to your toes. Nociceptive pain. Neuropathic pain. Acute pain. Chronic pain. 

Pain in EDS often starts at a young age. For as long as I remember, I’ve had so-called ‘growing pains’, except I never did grow very much! For some, especially in females, puberty can lead to increased pain, as can pregnancy. This is to do with hormones such as progesterone increasing tissue laxity. 

We can experience pain following a dislocation or subluxation, as is to be expected. But sometimes, paradoxically, something that ought to hurt a lot, such as the previously mentioned dislocation, doesn’t bother us too much, and we can simply pop it back into place. Maybe we’re just used to it?

We also suffer from chronic pain. This can come and go, or it can be continuous. It is this type of pain that is the hardest to deal with. 

Personally, my pain level never goes below a ‘4’ on a pain scale. Unless I’m asleep. Thankfully pain doesn’t wake me from my sleep too often. And I no longer experience anything higher than an ‘8’.

Traditional painkillers don’t always work for us. Or can have side effects that are worse than the pain. So far, I’ve tried NSAIDs, Tramadol, Codeine, Cymbalta, Lyrica and Amitryptaline. And morphine once in hospital. And have reacted badly to all of them, with only the slightest pain relief. I’m reluctant to keep trying. 

So, what does work? For me, the best thing is distraction. I love those Adult Colouring Books, though ironically they can cause me intense finger and hand pain. I’ve recently discovered an app for my iPad called ‘Recolor’. It’s an adult colouring app, and means I only have to touch the screen and not grasp a pencil etc. Very soothing!  Here’s a little something I coloured today, for example:

[image of a multicoloured metallic female-presenting cyborg with a brightly multicoloured 3D effect block background]


I’ve also tried Mindfulness Meditation, which is a bit hit-and-miss, but can be very useful at times. I’m currently reading How to Live Well with Chronic Pain and Illness: a mindful guide by Toni Bernhard. I like her other books, so I’m sure this one will be useful too. 

I also have, beside my bed, my Emergency Pain Kit. This consists of things such as massage rollers, ice packs, heat packs, braces and tapes, various ointments and lotions. I find these items sometimes help take the edge off the pain. 

[image of a box contains various items such as massage rollers, instant ice packs etc]


Besides that, some people find exercise can help relieve pain. Though I’ve never found that to be true for me. Right now, I’m avoiding anything more than gentle walking, due to my eating disorder. Maybe in the future I may incorporate something to strengthen my muscles and joints, though that’s unlikely. For those that do want to use exercise in this manner this is a useful page I found, even though it’s aimed at children. 

I’m just going to end this by saying, if you’re in chronic pain, you are not alone. One of the best things I’ve found for my pain, is simply reaching out to others who know what I’m going through. 
[image of a black background with the words ‘P is for Pain’ in red.]

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