It’s the summer of 2012. I am still at university, using the very last of the term-length pool membership I’d bought. I swim 2 miles. That’s 128 lengths of a 25m pool. The walk back up to the main campus is hard, steep and my bag is heavy with my wet costume. I collapse onto my bed. My hands hurt, but four or five doctors can’t tell me why that is. My knees hurt, but after three doctors, I saw one specialist who said it should clear up by the time I’m 20, which I turned last month. I swallow a dihydrocodeine and sleep for 8 hours.
The NICE guidelines released on 7th April recommend analgesics not be used for primary chronic pain. What they do recommend is exercise, antidepressants, acupuncture, and psychological therapies. Paracetamol and ibuprofen, possibly some of the most widely taken drugs outside of penicillin, that usually cost about 20p for a box of 16, they also can’t recommend.
If we move forward roughly 18 months from my earlier flashback, I sat in my doctor’s waiting room, my body now aching in even more places than ever before. I’d injured my shoulder, which simply never got better. The fatigue was the worst. I still swam, but less.
My GP referred me to one of the world’s leading experts, expecting he’d tell me, after six years of pain, that it was fibromyalgia. And, pre-empting that, he started a prescription for gabapentin, knowing that’s what the specialist would do in a few months’ time anyway. Or that I could stop them if for some reason he said it wasn’t that.
Fibromyalgia, considered a “primary pain condition” in a definition that is baffling to me, may see me lose some of my options. Gabapentin is on the list of no-gos. So is the pregabalin I switched to not long after. I honestly don’t think I’d have passed my exams in my second and third year without access to pain medication. And I worry about what we’re going to do now.
Nym says “[it is] dehumanising to constantly be told your pain isn’t valid. Being dependent on painkillers isn’t the same as being addicted and so what if it were. Don’t we deserve less pain?” I am inclined to agree. When it comes to my own pain killers (co-codamol now), I find I’m not so much addicted to the drugs as I am addicted to a life with less pain.
As Mik Scarlet points out “For almost everyone who lives with chronic pain, they’ve had a period where the cause wasn’t obvious or was being researched. During that period drug therapy is essential. What’s worse is this negative attitude towards medication is all pervasive.” He’s finding that even with a known cause, he’s “continuously fighting for prescriptions because GPs now see all pain medication as bad”
Jane Green, a educationalist and advocate for those living with visible and invisible disabilities/chronic illnesses, backs Mik up: “Medical practitioners are not trained to recognise conditions such as ours [EDS and Hypermobility] and thus we would be considered as chronic primary pain patients rather than chronic secondary pain sufferers.”
And you remember that specialist who eventually diagnosed fibromyalgia after I’d already been taking gabapentin for a while? He noted I had 6/12 hypermobile joints when he examined me, but didn’t explain it or investigate further. Looks like as we live into our second year of a global pandemic, I’m going to be seeking further diagnostics.
“The guidelines have been created with an ideology that has zero practical application. The NHS was already struggling to cope with the demand on mental health services pre-pandemic; thinking they can substitute pain management with a bit of CBT is foolish in the extreme” says Rachel Brownstein.
I’ve had 8 sessions CBT (in a building that wasn’t accessible), which I got through a local charity. I’ve recently had some more online from the NHS, a half hour session every 2 weeks. I’m looking to pay for more, but that’s not available to everyone.
Exercise is a little bit easier to access as a therapy, but even ignoring that my exercising exploits didn’t prevent or particularly help with my specific and widespread pain, it’s bloody hard to exercise when stuff hurts. And what if exercise makes your pain worse?
Beth had to quit the sport she loved because of pain “the Doctors wouldn’t even look into the symptoms that only exercise triggered and just told me to avoid the triggers.”
The guidelines do mention guided group classes, and my mum had a course of hydrotherapy in a group which she found immensely helpful, for both therapy and the comradery. In covid times, there’s Zoom, but nobody there to tell you that you’re maybe doing something harmful for you.
Prescribing exercise is problematic in itself as well. As a fat woman, I’m always told that my lack of exercise is harming my health because of my increased weight, but now I’m going to be blamed for not doing enough to help my disability as well.
Helen puts it quite succinctly “I don’t appreciate feeling like I am back in a PE lesson being told to run it off, no matter what the ‘it’ is.”
The prescribing of antidepressants raises eyebrows as well. M says “becoming suicidal is a possible side effect of antidepressants. They are not safe meds to hand out like candy.” Not something that NICE seems to mention in their recommendations beyond “discussion of the benefits and harms”.
I take an antidepressant anyway, because I also suffer from depression, but part of me is worried that will also go against me. I sure hope not, because there’s nothing much more depressing than constantly being in pain.
We don’t mean to discourage the alternatives to pain medication here at The Unwritten, there’s a place for these, but that place is in conjunction with a concerted effort at diagnosis, and with therapies to help in the short term as well.
As I now scramble to see the difference this will make to me (I’ll be calling my GP first thing in the morning) with my very understanding doctors, the reality is that I am well cared for at the moment, won’t give up what works to control my pain without a fight, and will probably be okay.
But it’s women of colour, trans women, non-binary folks etc. I am most concerned about. It’s those who are newly experiencing pain and don’t know what it is, or who have been in it for ages and still haven’t gotten anywhere. It’s also harder for doctors to take my medication regime off me now than it is to draw a line under it all and say ‘no more’.
RoundTheBendoWithEndo says this: “I always saw NICE as the last backstop before you were completely screwed over by the system, but now even that’s been pulled out from under people. I don’t know what happens when NICE clashes with people’s basic human rights… But I think we’re set to find out in the near future.”
Her last words and mine on this subject are the same. F*CK NICE!
Love our content? Want to help us pay disabled writers and continue to build this amazing platform? Find out how you can support us