Pain

Why is pain such a pain?

As much as fatigue may hog the limelight when we talk about ME, another aspect of living with it is something else that other people can’t see: the pain that varies in severity and even in location with seemingly no rhyme nor reason.

For me, the pain feels like a shape-shifter moving around my body. Its favourite places are my left wrist, my upper arms, the left side of my tummy, my right thigh and right ankle. Plus there’s varying amount of pain across my shoulders, neck and back, plus occasional chisel-like splitting headaches.

It can all feel very unpredictable. And the pain can vary from something dull to something sharp. Is it muscular or neural? Is it my bones? I’m not very good at sussing this out. All I do know is that I don’t like it.

So how do I manage my pain?

Well the first and important thing to point out here is that I am no medic. I am not offering advice or any kind of prescription when it comes to specific treatments. But I hope an insight into the things I’ve learned may prove useful to you.

I’ve had a mixed relationship with painkillers this year. I’ve tried the four hourly doses of paracetamol or ibuprofen. I’ve had shorter burst of stronger stuff prescribed by my doctor. But, on balance, I try to avoid them unless things are really bad, as I don’t think their effect is that great.

For me, key to reducing that pain is movement. I find my body locks up easily. If I stay sat down or laid in the same position for a long time, when I try to get up my joints feel like they’re made of concrete and have no movement in them, and my legs can feel like jelly and buckle from under me.

When sitting in a chair I gentle shuffle around a bit every five or ten minutes. Just that small amount of movement helps. And if I notice I’m slouching to the left or right, I balance it up with a short slouch to the other side. I find that stops all the pain gathering in one place.

Sensory overload, whether that’s lots of noise or lots of light or even a lot of people in one place can have a real effect on me, as does reading a lot. I first notice that my eyes go foggy, like there’s some Vaseline that’s been rubbed over the periphery of my vision. I know then that it’s time to remove myself from that situation as if I keep at it, headaches and other pain will follow. Heading off to a quiet place, or a very slow stroll or – for me – lying down in silence does the trick.

Another symptom that tells me it’s time to stop is when my arms start to burn. You know that feeling in your arms when you’ve been to the gym or carried heavy shopping bags? Well I get that without the need to work out or lift things. My upper arms feel like they’re on fire. Again, it’s time to get away from things and rest.

Catching these signs early also helps nip some of the pain in the bud. But there are other pains I have not yet mastered.

In bed my wrists have a tendency to feel very, very sore, as does my right ankle – regardless of which way I’m lying. I’ve still not found a great fix for this, but wrapping those parts up in the softness of my duvet really does help. It means I may look a little silly, but who cares?

Another surprisingly good answer to pain is distraction. If I find myself engrossed in something I’m watching on TV or, most commonly, something I’m listening to on the radio or via podcast, my awareness of the pain seems to diminish. It doesn’t make the pain go away, but it drifts to the back of your mind rather than at the front of it.

I find being close to nature has the same effect. Standing at a window watching trees sway in the breeze or the birds hopping from branch to rooftop. Watching the sea. Walking barefoot on grass or sand. These things sound a bit ‘new age’, but I’ve accidentally found they help.

There’s no magic bullet, but I hope some of these ideas may be of use. As ever, I really would love to hear from you if you have any others, as I’m sure other readers of the Zonked Club blog would be as well.

11 Comments

  1. pain killers don’t work can make it worse,and give you more gut problems. cannabis tea ,before bed will stop the headaches, help with the myalgia, especially that pain full stiffness in the legs , will help you sleep ,which in time with the proper diet, will allow you to have better days.

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  2. Gary! I know exactly how you feel! Snap!!!! And I have found the same fixes work to some extent! You speak from the heart but it’s as if your in my head! It’s so odd reading your blogs as they mirror my life so closely even though I don’t have ME! (I do have Chronic Renal Failure before you all yell at me that I don’t know what real fatigue is!) I love your blog, some great advice and it’s so nice to know I’m not alone! Thank you so much! Love Kristy xxx

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  3. I tend to rely on pain killers but I’m allergic to codeine so am on tramadol for cancer pain but it’s helped my chronic illness pain too it’s the first time pain killers have worked fully for me I was putting up with the pain which made my moods very bad they seem to have got rid of tense muscles which was caused by the pain overall I’m happy with my pain killers wish I was offered them before the cancer

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  4. I use meditation. Specifically an app called Headspace. It has en entire month of guided meditations specifically for pain management. (Along with ones for depression, anxiety, etc) But overall, my muscle pain is much reduced by low dose Naltrexone, and Plaquenil.

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