I am very upset. I feel like those of us living with fibromyalgia, and chronic pain are still not being listened to. After all these years.
I am sure, that I am not the only person living with chronic pain, who was concerned to read the new guidelines from the National Institute of Health and Care Excellence (NICE), which say that antidepressants, not painkillers, should be prescribed for people with chronic pain.
This is because NICE says common painkillers, like paracetamol and ibuprofen make “no difference to people’s quality of life” and may do more harm than good.
So anyone (over 16) with chronic pain, not caused by an underlying medical condition or injury, should instead be referred for group exercise programmes, some types of psychological therapy, or acupuncture.
Hmmm, let’s see.
- Acupuncture – done that (cried in pain during and after)
- Cognitive behavioural therapy – done that (why, I’m still asking myself)
- Group exercise programmes – yes yes yes
- Antidepressants for pain? – yess, Amitriptyline (twice), Duloxetine and a host of others I can’t now recall. Some worked for a while, others useless.
Of any help to me when I’m reeling from devastating chronic pain, and in desperate need of relief?
NO.When you’re in pain so bad you pass out, popping a co codamol is like flinging a stone at Goliath and expecting a miracle. But many of us have had to take whatever we get out of sheer desperation. And now they want to take what little… Click To Tweet
Are we going backwards?
For those of us who were diagnosed with fibromyalgia during that time when doctors knew little of it and said things like, “it’s all in your head,” or ‘just be thankful you’re not dying of cancer” like that New York City doctor once said to me, this will be reminiscent of those dark periods of when we were prescribed antidepressants and daily exercise and sent on our way.
When we spent endless money, begging doctors to believe that our pain is real; as bad and limiting as it really is. And that even if the medical tests don’t show it, we’re really very unwell, and need real help.
Many of us still go through this today, but remember when our families didn’t believe us? And people thought we were just being lazy? Or missing work because we didn’t care?
In actually, we are often in the clutches of chronic pain, so bad, that we feel we would die from it.
I know what that is like, because I’ve lived it, again, and again, and again. And my God, it is exhausting! Having to beg doctors, only to be told to take paracetamol or co codamol.
When you’re in pain so bad you pass out, popping a co codamol is like flinging a stone at Goliath and expecting a miracle.
But many of us have had to take whatever we get out of sheer desperation. And now they want to take what little options we have?
We’ve tried endless medications because pharmaceuticals and governments have failed to invest sufficiently in research for a cure for conditions like fibromyalgia. Even though it affects as many as 1 in 20 people, and NICE’s own guidelines say that the type of unexplained pain in question may affect as many as between a third and half of people in the UK.
What about relief for severe pain?
This is why most of us will have already been through these now “recommended” programmes.
Don’t get me wrong. It is important to give patients (particularly newly diagnosed ones) an opportunity to see the chronic pain in their life in a different light. My own, better management of fibromyalgia is partly because of a change in habits and behaviours, found on my own path (and no thanks to CBT, which I’ve not found very helpful).
And (this bit is important too) that is not to say that CBT, therapies, exercise and acupuncture aren’t helpful, in some way, to some of us, at some point.
But when patients have tried all these things, (and many of us already have) and don’t find them useful, what do we do?
What about when we have carry on and function, and simply need some pain relief? It's not ideal, I know, but we live with pain EVERYDAY. That's our reality. We're just trying to have some quality of life. Click To Tweet
Will a course of CBT give me relief when I’m flaring so badly, I can’t lift myself out of bed, and I have to crawl out (with no help), and find some way to make it to work?
Will it help when the chronic pain is so bad it triggers a migraine and other symptoms like nausea, flares of IBS so bad I don’t know if I’ll make it to the loo in time or dizziness so sickening I feel like I’ll pass out on the train among strangers?
Remember when some in the medical field acknowledged us as ‘experts in our own right’? Only to forget it when convenient (Well, that’s a shame.)
READ MORE: Welcome to the hall of pain
Let me close by saying I use a mix of conventional and alternative remedies to manage my pain, things like ginger root and turmeric root and so on. But sometimes, I have flares of pain so severe, I cannot function or stay alert without some help or relief. This is not about dependency on drugs. It’s about giving people with chronic pain, the help and hope they need when they need it. I hope someone will listen.
What are your thoughts on the new guidelines? tell me what you think!
Gentle hugs fellow warriors, be strong x