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?

Has anyone considered MH ? My DH had very real physical symptoms, and every test/scan came back normal, and what he actually had was anxiety. Antidepressants made a massive difference, he went from not being able to work, to being promoted.

I'm sure he has Mh issues now, but its hard to know cause and effect isn't it.
Thank you for the suggestion. The GP has suggested amyriptalin for the pain and I think its supposed to have anti depression impacts too so I'll try to encourage it.

As soon as you mentioned back pain I thought gall stones. I have these but they've improved with diet. Thing is, gall stones mostly pass within 24-48 hours but the pain is intense. When your husband has tests they may have 'moved on' if he has them. Whilst they are still around the pain is horrendous; started in my right shoulder.

I was only diagnosed when one of these stones blocked my bile duct and I turned yellow. I had an ECRP(?) procedure to get the stones out. The relief was immediate.

If this isn't what he is being diagnosed with then (I'm not convinced by his medics but), the one thing that he could do to try to alleviate pain is peppermint tea - and TDCA tablets, they help very much, Amazon sells them.

I wouldn't attempt to diagnose but I would very much recommend peppermint tea and TDCA tablets, look them up. They're herbal supplements to help.

I hope he finds relief soon, very sorry to hear of the pain.

Sounds like it could be gallstones or else sludge in the gallbladder that causes the same symptoms but doesn't show up in scans. I think he should try following dietary advice for people with gallstones to see if it gets any better https://www.cuh.nhs.uk/patient-information/dietary-advice-for-patients-with-gallstones/#:~:text=You%20should%20try%20to%20choose,high%20fibre%20varieties%20where%20possible.

And save up for a private appointment with a consultant if you can.

Has he had a scan of his pancreas?

Have they scanned his kidneys?

Abdominal migraine?
Hereditary angiodema?
Gastritis?

Hope he gets a diagnosis and treatment soon.

At the least he should ask for a referral to a pain clinic?

Has he had a CT scan?

Ukrainebaby23, I had these same symptoms. Also had irregular swelling of my tummy and pale stools that floated (sorry if tmi) and seemed to get more and more sensitive to foods. I could only get slightly comfortable lying in one position and not moving. I kept going back to GP and A&E, ultrasound scans were inconclusive and I felt I must be imagining it all until one day, a Dr in A&E actually listened. Long story short I had a CT scan which showed there were no gallstones present but there was a mass on my pancreas. Turned out to be stage 3 pancreatic cancer. I’m thankfully in remission now following surgery, chemo etc but more than half of the people who are diagnosed with this disease are diagnosed too late. Please push for a CT scan. I really don’t want to scare you and hope and pray this isn’t the case for your husband but push, push, push for a CT scan. Good luck and I hope he gets better soon. Please let us know how he gets on.

I'm sorry, this sounds incredibly stressful. It seems wrong to just have him on strong painkillers without finding the root cause. Can you ask for a second opinion?

He's had several Ct scans nothing conclusive has been reported.
I know different types of scan show different things.
He did have ultrasound early on as there are a few cysts on his kidneys which we dont think are the problem, ie incidental.

He did defo have a gallstone at one time around the start of the trouble, in 2022 and look liked it passed but the pain never left. There was some suggestion of pancreatitis, and I fear they thought he was a drinker, he really isnt.

On a score of 0 to 10 his pain never goes below 4 and mainly sits around 5 or 6, even with these meds.

I'm sorry for your diagnosis and I hope your prognosis is good, I know treatments are getting better but it's a nasty disease.
Thank you for sharing, we are obviously considering this possibility but he has had several Ct scans now and MR scans again nothing concerning or conclusive.
We live life as if it's his last year, so we try to do memorable things we can afford and prepare our house as best we can (doer upper but struggling for funds and his ability to do jobs).

Anyway thank you for sharing, and I hope we don't join the club no one wants to be in, but I wish you the very best in treatment, results and good pain relief.

Are these attacks worse after fatty food?

IBS? has similar symptoms.

That's probably reassuring in a way about the scans. I asked because I have a stage 4 appendix cancer which is incredibly rare (1-2 cases per million of population) and very hard to diagnose and I had a couple of years of vague symptoms until the tumour burst through my appendix (which is generally how it's discovered) by which time the cancer had spread through my colon, ovaries and peritoneum. But I never had a CT scan until after I was diagnosed.

Has he been checked for prostrate problems a friend went to the Dr for back pain turns out it was prostrate problems

Can you afford to go private / does he have health insurance? There are specialist clinics that diagnose abdominal pain and if you can manage it I think it would be worth paying to sort this out. I really don't think it right to be taking opiates over a long period without a diagnosis. Must be an awful situation for you both.

@Ukrainebaby23 I agree with @Okayornot I'm guessing you probably don't have any spare money from what you are saying but if there is anyway you can find some for a private consultation and possibly some investigations it would obviously be worth it to get to the bottom of it, and if they are able to discover the cause and suggest a course of treatment then it might be a good financial investment if it gets your DH back to work.

Also your DH should not be on opioid pain relief for longer than 6 months, especially as it can cause bowel dysfunction.

Ukrainebaby23 thank you. Thankfully the fact he has had all those scans would suggest it isn’t what I thought. I’m so sorry if I worried you. One more thought, I expect he has but has he had blood tests? CA19-9?

Can't comment on investigating the pain.

Re long term pain relief, if he's on opioids and the pain has been ongoing for some time it's worth looking at something like amytriptyline or duloxetine. There are officially anti depressants but they are able to "turn down" pain nerves and are helpful for long terms pain.

I had an accident ten years ago and am ten years into taking pain relief daily.

Amitriptyline is awesome.

Probably, though DH denies this, he's eating mainly low fat so I'm guessing it aggravates the pain.

My friend says this too for her various ailments

I don't think so, but I'll ask, this is a blood test that looks for cancer?