Dh cried twice yesterday

[Ukrainebaby23]

I dont know how to help him. I write this in desperation.

Background
Male in late 50s
No previous long term health issues
Never smoked or used recreational drugs
Light social drinker but rarely in last 6 years.
Bit overweight but loosing a bit mainly due to decreased appetite. We've always enjoyed our food.
Used to exercise more but gets out of breath quite quickly now.

Has been increasing unwell for last 3 years, but no specific diagnosis.
His pain is abdominal, gall bladder region, hough soreads to the back at times. He's had various tests, scans and theories of pancreatitis, gall stones, have all been raised.
His pain has increased so much in the last 6 months he's unable to work and on opoids.
I see him struggle every day and yesterday he cried twice as he talked about other stuff that he can't do bc of the pain.
He's old school and crying is really not him.

Tbh I've posted a few times about he's not helping with our child, and whilst I'm frustrated I do believe his pain is real and worsening.

No one seems to care that he's in so much pain, last time he went to hospital they sent him home as having food poisoning (he doesn't have food poisoning:).

Occasionally he gets a phone consult with his hospital consultant who suggests another test which reveals nothing. His bloodwork seems grossly normal.
His BP gets high with pain, otherwise OK.

Dh thinks he's gonna suffer a slow painful death (and no one gives a toss) by which time we'll be completely broke as he can't work. I don't know what to do.

I'm not looking for a diagnosis, though suggestions welcome, but ideas how to get him some help.
Surely they can't just leaving him taking increasing opoids without a diagnosis?

After an episode of pain, the nervous system can get twitchy and think the pain is ongoing, or recurring. It’s a toxic stress reaction, sometimes.

I find it helpful to view it as my body raising the alarm that it’s struggling under pressure and needs me to be more realistic about what I can do.
Amitriptyline seems to settle it down, let me sleep, and generally make everything better. I’ve had no mysterious injuries since taking it.

Being one in 20million probably doesn't help you feel any better I guess? Sorry for your diagnosis and thank you for sharing, I hope your treatment has good results and your pain is controlled.
I appreciate your time replying and hope for the very best possible outcome for you.

Yeah it's definitely not the kind of "special" I would have chosen. A lottery win would definitely have been preferable.

Yes, all cancers have their own CA number. CA19-9 is the one for pancreatic cancer. Normal is no higher than 35.

If he is sensitive to fat it would suggest gall bladder/bile duct/pancreas I think. It could be one of many things associated with those, ie pancreatitis, blocked bile duct etc. I’m not a medical person at all but have done an awful lot of research. Does he have a tinge of jaundice about him?

My bf had chronic pain in his pelvis - it was pudendal neuralgia. It ruined life for near fucking three years but he is doing so so much better now. Lots of daily stretching and amitriptyline have helped him regain most of his life. I honestly feel for you OP, this sort of mystery chronic pain is awful, I think I had a breakdown because of it and we broke up at one point. Sending lots of love to you.

Ask your GP to refer to a pain clinic. Control of the pain at this stage is more important than a diagnosis.

I have arthritis so I live with pain.

I was given some advice when I started on amitriptyline I was told stick with it, at first it has no effect, then week two you start to feel unwell and very tired. After two weeks it starts to get better.

I also use hot and cold therapy, physio and I have a TENS machine.

One thing it is worth considering is paracetamol. On its own it is a mild pain killer but it augments other pain killers. Talk to the GP about it.

@TwigTheWonderKid I know a couple of rheumatologists who disagree with you.

I'd look for a second opinion, and pay if necessary

I feel really uncomfortable with pain or any symptoms being dismissed, particularly if they are dismissed as being to do with "mental health".

I think it's really uncomfortable to suggest that because we don't know the answer yet it cant have a physical cause. But then I went my whole adult life with my symptoms being dismissed by GPs until finally an optician flagged the condition that was causing all of them. Normal blood tests etc doesn't mean there isn't a cause, it just means they haven't tested for that cause yet. My bloods were normal, thankfully my GP still referred me to neurology.

Sorry he is going through this op it must be really tough for both of you.

Sorry, disagree with me about what?

Thanks for all your lovely and helpful responses.

I'll discuss with Dh tomorrow and see where we go from here.

Very tired so apologies to any I haven't replied to directly.

Not taking opiods for longer than 6 months.

I actually have some sympathy and don't think it's a MH issue. It's often women who are dismissed, coping with pain, when they've done tests, they can't find anything wrong, so this leaves you in no-mans-land, is actually soul destroying.