What's wrong with my husband?

[Redlegged]

I really don't know which section to post this but I'm pulling my hair out and doctors are useless so I'm hoping someone will say "oh I know what that is..."

My husband has a history of mental health problems, but not since we met. He can't handle stress at all well and gets overloaded quite easily.

He had some kind of nervous breakdown a couple of years ago which seemed a bit abnormal to me. He got paranoia and behaved in some strange ways. I would say he seemed depressed but it seemed like more than that. It was some sort of episode.

He saw the GP at the time for numerous physical complaints - stomach aches and so on, but the GP found nothing. The GP said he felt he needed mental healthcare but DH refused (he's VERY anti this due to traumatic past experience as a teen).

This episode where he was very extreme seemed to go on for 3 months, then he was listless for months.

After that he got better but we had to change our life significantly to remove all stress. Then he got covid. Not sure if that's relevant but it might be so I'm putting it in.

Then about six after the episode he got joint pain and fatigue. That's escalated and escalated to a point where we don't do anything or go anywhere. He wakes up in the night in pain, he wakes up in the morning in pain, he is always exhausted.

He gets an extremely swollen abdomen. He's developed allergies to foods and pollen. Painkillers do nothing. It's worst in the morning. Stress exacerbates it.

Now he's developed a heart problem. He's only 41 and was a keen cyclist with exceptional fitness and we eat like vegans! His heart has always been fine.

We've seen doctors and had every test and everything comes back negative. They're not really helping us, we just get passed from pillar to post.

Does anyone have any ideas?

I'm at my wits end. He doesn't even have energy to speak to me.

Could you stretch to the cost of a private referral to a rheumatologist that has an NHS clinic? That way, you get seen by the Rheumatologist (taking all the blood results, etc, with you) and they can add him to their NHS list for treatment if they agree this could be seronegative autoimmune disease.

@NeverDropYourMooncup yes we can. I want to do this so I'll have a Google and try and find a private doctor

I haven't read all the way through - apologies - but I didn't want to read your original post and run. Could it be FND - functional neurological disorder? There's no test to prove it, and in many ways it mirrors POTS/ME/chronic fatigue, but there's often a psychiatric/emotional trauma cause at the root of it. A neuro physiotherapist and neuropsychiatrist may be able to help, but also look here: https://fndhope.org/fnd-guide/symptoms/#

Yes as I said T wave inversion can be normal in some leads and not in others. So can't comment without seeing it but it seems they ruled out an acute cardiac event? Not sure why he had a chest referral from what you've said as ecg is cardiac/ heart.

Sometimes things change sbd evolve too so it depends a lot on how he is.
What are his main issues right now? Do you think he needs the Dr?

What does referal for chest mean ?

Has he seen a cardiologist ?

It could be autoimmune related and I would say that once you have one autoimmune condition you can be more susceptible to another.

I can say I have suffered with the majority of the symptoms in your list ( not the mental health issues however) and in the last six years I have been diagnosed with first, pernicious anaemia and more recently psoriatic arthritis. And I second what a PP said the NHS when testing seem to think very low thresholds for things like B12 are acceptable.

Depending upon where you are, Guy's Hospital is great with PsA/seronegative autoimmune disease. Look for consultants who have a special interest in it.

When I had my coeliac test this year it was a stomach one down the throat, they have to test your stomach for it not bowel. Has he had a blood test for coeliac?

They said his ecg had inverted t waves and possible myocardial ischaemia. They did blood tests and a chest x-ray and said they were normal. They said he would get a referral to the "chest pain clinic". I dont know what that means.

It was at Guys hospital we attended the rheumatology clinic and saw the physio. We will try and find a specialist there though.

The worst symptoms are the pain (we can't even give sex he's in too much pain) and the fatigue because he can barely do anything.

Are there any heart problems in the family ?

Any problems with parent, siblings health ?

Ah ok that's cardiology - chest pain clinic investigates the likely cause of chest pain and arranged further tests eg angio etc if thought to be cardiac in origin

All I would say is that my husband's severe and enduring mental health problems had brutal physical effects. I hope you get some answers from somebody and I hope time will improve things.

Coeliac as a previous poster suggested is a good shout. I had a very similar thing happen to me.
I got covid and was very unwell, even months after I struggled to stand long enough to wash pots or push the vacuum around. I don't know how it happened but I must have developed ceoliacs, I was unaware and it caused horrible back pain (which in hindsight was gut pain felt through ny back). Because ceoliac stops the correct absorption of vitamins I became aneamic, my blood works didn't look bad according to my doctor but once I started taking iron tablets and vitamin b supplements I felt much much better overall. The anemia had been making me very tired and dizzy but due to the long covid I'd had before the 2 had started to blur into one.
I had a patch on my tongue from the vitamin decency and I got angular cheilitis in the corners of my mouth, so obviously I was quite bad but for some reason my bloodwork didn't show it.
I cut out all bread, what pasta etc and the back pain died down very very quickly. It may be worth trying especially as he seems to have developed other food allergies.

These guys helped me https://www.theoptimumhealthclinic.com/

If you are on Metformin you need your B12 levels checked regularly.

I'm sorry to throw a curve ball with little extra information.
Can you look into the enteric nervous system? Find the specialists in it?
(Google it - it's the 'brain in your stomach '.)
As sole "appeal to authority", I heard of it from my father, who's a neurosurgeon.

All this information is great. I'm going to list it out and look into it all

Just read first few posts and was thinking - Lymes disease from tick bites? It can be truly awful and debilitating.

Thank you! I've not long had bloods done and was told I've got a folate deficiency I've been on folic acid over a month and feel worse than I did before I knew but I have an appointment on Monday so will ask what they were thanks again

@Redlegged you can absolutely be very very unwell with fibromyalgia. I know an acquaintance who has barely left her house in several months and is often in bed most of the day due to fatigue. It's a terrible blight in her life when before she was an active and energetic member of the community.

Is he particularly tall skinny or angular ? The pain in body and cardiac problems put me in mind of Marfan syndrome a genetic disorder

@AvocadotoastORahouse possibly I don't want it to be that because it feels like then he won't get better.

@ichifanny he's 5'10" and healthy proportions :)

lyme disease

Sorry to hear what you and your DH have been through.

I was wondering if there may be a histamine/MCAS/Long Covid link.

This isn’t a personal recommendation but Dr. Tina Peers has found lots of similarities with histamine intolerance, MCAS and Long Covid:

www.drtinapeers.com/longcovid

This article mentions bloating, eczema, joint pain, heart issues and other symptoms in relation to histamine:

www.connectedhealthcaresystems.com/post/are-you-suffering-from-issues-related-to-histamine#

Elevated histamine can also affect mood.

@Automaticforthepeople that's a really interesting suggestion, thank you!