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Is pain a lifelong expectation for us?

No preamble I'll get straight to the point here.

Have you ever been told by a doctor or other HCP that pain is 'just something that you will have to get used to'?

I have, on a couple of not-worth-remembering occasions.

On each of these times I have calmly left the premises, cried in the car, and then changed my doctor, leaving a clear explanation as to why I wasn't happy with that doctor.

I don't believe in moaning when you can do something!

I make sure my healthcare is provided by kind human professionals who can at least emphasise with someone experiencing chronic pain at a distressing, life disrupting level.

I am lucky and yet despite this and 12 years well managed Humira treatment, I continue to be in constant pain.

I've been referred by my excellent consultant for extra bloods and scans, which show minimal changes (obviously good!) and that my arthritis is not very active, mainly increased local vascularity, tendon site swelling and active enthesis, completely classic PsA.

But severity of pain doesn't show up on a scan, and clearly a scan is not a clear answer to showing the full cause of my pain.

Painkillers don't seem to help at all.
My sleep is really broken due to pain and I no longer work due to how everything impacts me.

I'm not sure how I can manage the pain.

I'm starting to think I should investigate other causes of chronic pain, esp as my arthritis is apparently well controlled.
Fibromyalgia has been suggested by a dr.

I have asked for (covid-stopped, nevee restarted) pain management help I'm not hopeful for that really. It wasn't ground breaking even when it was on.

Woild anyone care to share their chronic pain issues, help or investigations?
I would really love to hear others' experiences or management.

I am not prepared to accept that constant pain is just something that I have to 'get used to'.

  1. I hear you Sarahr...but my experience is like Eric the Eric. Pain is just part of my life, a matter of degrees.


    A good biologic (I am on Cosentyx) can help but mostly it's job seems to be slowing down damage/progression. Accepting that is hard but it can be managed somewhat by a healthy diet and exercise/stretching and rest. I "sleep" like you do, often feeling like I'm waking up with a hangover. Lots of ups and downs I guess.

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