Living well with chronic pain when treatment no longer helps?

[wirewalker]

I have dealt with Migraine all my life and for the past 17 years or so my Migraines have been largely chronic and are considered refractory which means they haven't responded well to treatment. I'm under the care of one of the top specialists in the country who I am very lucky to live close to and I have done all the conventional treatments including the new CGRP medications (I was on the clinical trial for those) and botox and well as all the other preventatives and devices. I am currently getting botox again but it isn't working. I've also done countless diets, alternative therapies, supplements, meditations and types of exercise and none of it works.

I think I have to accept that this is it for me and that I'm never going to get properly better and look at how I can live my life the best I can with with Chronic Migraine which for me means severe pain most days. I haven't worked in many years now but do not currently get any benefits but I am now thinking of applying for disability support benefits to help me with day to day living and things I really struggle to do to try and at least have a bit of dignity in my life.

I wanted to ask other people who deal with significant pain and illness on a daily basis, how do you cope with understanding that you won't ever get better and that many of the dreams and hopes you had for life will never come to anything? How do you make a good life with this kind of illness and pain?

You just make the best of it, take every little win you can. Had a couple of hours without pain or you had the energy to do your laundry? that’s a positive and you need to hold onto that feeling of accomplishment otherwise your mental health will crumble.

I take really strong painkillers, have bodywork done weekly and just end up powering through work as disability is not enough to live on when the only disability is the pain itself.

@FromRwithL Is this how you manage? I think my mental health has been ok but then I've always been a fighter but I'm at the point now where I think the fighting is doing more harm than good.

That sounds really difficult for you, does the body work provide any relief? One issue with migraine is that Painkiller use actually makes it worse over time and they stop working eventually as the pain is different to many other kind of pain. With migraine it's a complex neurological illness and so the pain is not the only impairment either, it is probably the most prominent symptom but the disabling effects are more significant than just the pain itself.

It helps but relief is limited. I have trigeminal neuralgia as well as a degenerative spinal problem. They tend to set each other off. I tense up with the pain but then the tight muscles pulling trigger another flare up. The bodywork helps with the muscle tension.

As you say, you get a tolerance for painkillers until they stop working. Codeine, Naproxen, Tramadol, might as well be skittles for all the good they do. My current drug of choice is Diclofenac 100mg suppositories. I try and save them for the really unbearable flares so that they don't stop working too soon. Neurological pain is difficult to manage as almost nothing touches it.

Hello , you and I could be twins - I’ve never encountered someone with them as bad as me before !
it bloody sucks !! I’ve been having therapy lately which helps with acceptance.
if you want to message me I can provide her details .

Have you considered a physio who specialises in chronic pain? Definitely worth a shot .