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.

When you say hes cut out gluten, does he have a separate toaster, butter because of crumbs, even soy sauce and malt vinegar has gluten and cross contamination is vital too.

This

Agreed

I remember the thread too, the poor woman went blind in one eye before she was properly diagnosed.
The fact he does a lot of hiking, he needs to get tested for Lymes disease. You don’t need to have had a rash to have developed lymes.

Read up about fibromyalgia. The pain can be severe. It can also affect the brain

This is from the NHS website!

*Other symptoms of Lyme diseaseSome people with Lyme disease develop more severe symptoms months or years later.
This is more likely if treatment is delayed.
These more severe symptoms may include:

• pain and swelling in joints
• nerve problems – such as pain or numbness
• heart problems
• trouble with memory or concentration*

Pretty mush what you have posted @Redlegged

Here’s the link

https://www.nhs.uk/conditions/lyme-disease/

From the symptoms you've described MCAS certainly sounds like it could be the problem with your husband.

My partner's MCAS was triggered after a very stressful time. The symptoms were so varied and severe but the NHS didn't have a clue & it was a private doctor that eventually diagnosed her problems.

She had to start an elimination diet (low histamine), to find the triggers & take antihistamines plus H2 Blockers. The symptoms reduced dramatically from the initial flare up but it is still an ongoing condition that requires a strict diet of tolerable foods and when she does get a flare up the meds help get her symptoms under control.

Inflammation/ joint pain and severe fatigue is a very common symptom with MCAS.

Aside from the MH history I could have written this about my husband 🥺
Extremely fit endurance cyclist, very physical job and then developed symptoms very similar to those you’ve described.
He had chest x Ray, 2 lots of bloods- no abnormalities found, 2 x ECG Incl walking ECG, ultrasound on heart …. Nothing found
He’d had 2 vaccs and got covid in October last year.
Started to feel unwell mid November and despite now being on meds for high blood pressure and struggling with anxiety; he is feeling much better.
We can only put it down to vacc damage or long covid 🤷🏼‍♀️
it’s so frustrating not getting answers despite all of the tests - I really hope he just comes out of the other side 🤞🏻

A friend of mine has been struggling with unexplained pain, and in her case the best bet seems to be 'post-treatment Lyme disease syndrome'.

Your husband couldn't be post-treatment, but it sounds like untreated Lyme is similar. Just an idea. Hope you get to the bottom of this!

You can be THAT sick with fibromyalgia - I was diagnosed just under two years ago and shortly after ended up having just over eight months off work.
I had pain, fatigue (call that exhaustion) plus neurological symptoms which have no other definable cause.
I just about managed to keep my home together, but had to totally let my garden go. I ended up having counselling to deal with the impact it had on my mental health.
I had to work very hard, as my symptoms improved, to get back to being fit enough to go back to work, but still struggle on a daily basis, and am only able to do what I do now assisted by a raft of medication.

My DP has some of the same symptoms and it is Long Covid which he first caught in March 2020.

T wave inversion can be normal in some leads, not in others.
I mean does he have specific bowel symptoms to go with the bloating? Does he have joint swelling or just pain? Is the pain constant or intermittent? Was he on anti psychotics? Is he on any medication?any weight loss?
Most of the symptoms are non specific, but what could be going on all depends on a full picture of symptoms, a clinical examination and test results as people grasping at diagnoses which cause non specific generalised symptoms aren't really able to give the answer as its impossible to say.
What has the GP said?

What are his b12, iron and D3 levels. The nhs think rock bottom levels are fine

Sorry what is the heart problem?
Hand and foot pain in the mornings often with stiffness can be a symptom of inflammatory arthritis like rheumatoid arthritis.

Consider Lyme disease .

I've got late disseminated Lyme disease and many of those symptoms I have . It
Took for me to
Lose sight in one eye to get a diagnosis from the hospital.

Ask for a Rheumatology referral

Just so you know, he could have serous-negative RA. The markers don't always show up at testing. I have sarcopathy, which is sarcoidosis in the bones and joints. The symptoms are nearly identical to RA, so I was treated with a biologic drug that's used for more than a few autoimmune and inflammatory diseases, including Crohn's and RA.

I wish your husband luck with finding a diagnosis. Autoimmune and inflammatory diseases can take a lot of time and specialists to identify.

Also, the gut is now believed to be the root of physical and mental health; bacteria levels have an effect on everything in your mind and body.

I was going to suggest Fybro too

LOOK ATTHE ISSUES HE HAD PRE-covid - So your partner had issues which he decided not to pursue further?

What are his rashes like? Is there any history of Psoriasis (often called Eczema when people aren't properly diagnosed) in his family? Don't be scared, but has he any family members that had cardiomyopathy or, to put it bluntly, dropped dead?

Rheumatoid Arthritis and Psoriatic Arthritis can both be sero negative - that means they're disease of exclusion, rather than something that has a definitive test.

Are his fingers or toes looking fat like sausages? Does he get a lot of pain in his tendons?

Uncontrolled inflammation can cause emotional disturbance - if I'm having a flare, before the pain or skin issues really kick in, I'm a wreck and within a couple of hours of having a steroid injection, I'm fine again - since I've been on biologics, not a peep of anything.

He sounds as though he wakes up in the morning feeling like he's been through a cement mixer full of rubble overnight. That's something normally termed 'early morning stiffness' - yeah, right; more like 'all bloody day pain' when it's uncontrolled.

I'd request a Rheumatology referral on the basis of his joint pains, skin issues and that feeling of being hit by a bus (and reversed over five times) - it's also quicker usually than Dermatology. It's also common to have stomach issues with it, although I would suggest that you have an entirely gluten free house, as it's so easy to cross contaminate if you're still having things.

And when you get to Rheumatology, I would ask for a steroid injection in the muscles to see if that helps, as it's also regarded as an indicator of it being autoimmune in nature to respond to them. And oh, the relief of it.

Coeliacs disease

Have you read 'when the body says no'

Rheumatoid arthritis !
ive fought with doctors for years and now just at x ray stage . My bloods never show anything ( common with R A ( although they have been gone two weeks this time )
the fatigue can effect your mood .
im looking back over an 8 year period and now feel my “depression “ was the start of this it was the exhaustion, but due to having just given birth I linked it to pnd.

RA can effect the heart and skin and many other things not just joints.

Read up on it sounds very very alike .

Op i can't help with diagnosis but have two things you may want to explore.

Many if you oh symptoms may be helped with a low inflammation diet (very low carb/keto diet) they are good for pain, especially nerve type pain and gut issues like ibs. Might be worth looking into.

My second thought is that my oh had 18months of episodes of (apparently) long covid lasting 2-9 weeks each. I was getting desperate and started looking up peer reviewed treatments for it. Found that some supplements have helped in controlled trials. Zinc, vit d and b12 plus pre and pro bionics. Found some of those daily probiotic yoghurts had almost everything (actimel immune support but I'm sure there are other brands). He started taking them in nov last year and hasn't been ill beyond a mild sniffle since.

We are both baffled as we are both big sceptics but also seems a massive coincidence if that isn't the cause. Please don't take my word for it and investigate yourself but I do appreciate your situation as it is similar to mine so thought I would add my 2 cents.