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Original poster

What's wrong with my husband?

210 replies

Redlegged · 27/08/2023 19:33

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.

OP posts:
Thread gallery
10
Automaticforthepeople · 28/08/2023 21:22

@Redlegged Hope it helps. 😊

@Chickenpie35 It might be worth investigating/asking about L-Methylfolate, an active form of folate.

MellowMelly · 28/08/2023 21:29

Sounds very much like my daughter. Finally, she got diagnosed with Fibromyalgia. She gets every symptom you listed above. She has the MTHFR gene. We have paid for further private testing to find all her other issues related to this. Her digestive system was naff so we have had to rebalance that. Her mineral levels were all skewed and she had a high level of gut inflammation so she had issues with her tummy daily.

it’s amazing what we found out with more comprehensive testing.

LocomMotive · 28/08/2023 22:01

If you are referred to a cardiologist, they may do genetic testing.

This is what happened with my family, a routine ecg showed an irregular heart beat, from there genetics tests were done and mitochondrial disease was found to be the cause.

The whole family had this but we all had varying symptoms, that's why I asked about the health of his parents and siblings.

Original poster
Redlegged · 28/08/2023 23:37

Thanks so much everyone. I've compiled an email for the GP and will request tests for all these things which fit as well as a trial run of steroids.

I'm partly terrified it is fibromyalgia because honestly we've got him on a great diet, we exercise and he's just deteriorating and I just feel worried about there being no clear treatment.

He has a very stressful job and he's already so depressed.

OP posts:
Alyi · 28/08/2023 23:54

A friend of mine had similar unexplained symptoms and they discovered it was linked to a rare autoimmune disorder. Maybe getting a second opinion from a different specialist could be helpful?

On the emotional side of things, my spouse and I faced challenges in understanding and communicating through tough health episodes. What genuinely made a difference for us was online couples counseling. It allowed us to delve deep into understanding each other's feelings, like this one exercise where we mirrored each other's emotions. That alone brought so much clarity and closeness.

It might not be a direct solution, but it did bring harmony back into our relationship. Stay strong and hope things get better for you both soon.

LocomMotive · 29/08/2023 00:23

I think for the moment all you can do is manage his symptoms till he gets further tests.
You say he has a great diet, what does that look like ?

Personally with you saying he has very little energy I would put him on an easier diet to try and alleviate his stomach pain and bloating, does he suffer with constipation ?

RiverSwift1 · 29/08/2023 03:31

I worked out I was very sensitive to certain things after going away, then feeling so much better, after just over a week from home. Worth a try? (I wrote more about this on page 5) Before that the only reason I had to live was for my young children (at that time), as my health was a complete mess for years - It’s taken a long time but I can live fairly normally now.

80s · 29/08/2023 09:56

Haven't read it all so sorry if this is repeating anything; ignore as required.
I listen to a "House"-type podcast about mysterious ailments that take ages to identify, which has sadly not made me an expert on the subject, but the stories all have some things in common. The diagnosis usually comes from seeing multiple doctors, one of whom just happens to have seen a case during their training or read about it recently. So it's definitely worth trying to get it on more professionals' desks. In many cases, the patient has found it on the Internet and been ignored. So it's worth being persistent and reading through reports (as you will recognise even minor symptoms). And worth bringing up all the symptoms to every doctor, even ones that might appear irrelevant, as often the diagnosis is late because a certain doctor did not have all the facts. Sometimes you only tell your leg doctor about your leg, not your sore throat, so they don't have the big picture.

Some of the weirder cases in the podcast involve parasites - not just Lyme Disease but other rarer ones. The patient might come into contact with an exotic plant through compost, or with an exotic fish or snail from having an aquarium, so international travel is not required.

Utini · 29/08/2023 21:27

@80s what's the podcast? Sounds right up my street!

porridgeisbae · 29/08/2023 22:54

There are several things going on

He is 'neurotic' for want of a better word and has some mental health problems.
He's had some psychosomatic health problems the GP felt were related to poor mental health.
People with previous mental health problems are at greater risk of developing fibromyalgia/CFS.

He has a genuine heart problem (what is this?) that maybe unrelated and just bad luck.

@Redlegged He needs to work on his mental health weaknesses in an evidence based way. This definitely won't hurt his pain/fatigue and other psychosomatic issues, and it might well help a lot.

If he doesn't do all he can to improve then he's not being a good husband as his issues will make your life less pleasant than it needs to be, too.

He needs to work on his underlying vulnerabilities, or any stress might lead to him having very poor mental health again.

porridgeisbae · 29/08/2023 22:56

mental health weaknesses = I'm not saying people with poor MH are 'weak,' I have a severe MH disability myself.

I mean he has to work on his vulnerabilities and developing emotional resilience and the ability to better cope with stress.

Also any other psychological issues that might be exacerbating things.

LocomMotive · 29/08/2023 22:58

He has a genuine heart problem (what is this?) that maybe unrelated and just bad luck.

What the hell ?

LocomMotive · 29/08/2023 23:01

@Redlegged

How is he today op ?

Notamum12345577 · 29/08/2023 23:01

loulouljh · 27/08/2023 19:40

Was he vaccinated? There are alot of people suffering from vaccine injury..

There is a very tiny percentage. Not a lot of people

porridgeisbae · 29/08/2023 23:23

@LocomMotive I maybe phrased that wrong but I mean that (unless it's psychosomatic palpitations or something) is maybe not related to his mental health. The other things might well be.

Either way, it won't do him any harm to do the serious work on his MH that he's been avoiding all his life.

Original poster
Redlegged · 30/08/2023 02:27

It's not psychosomatic. It might have been somehow triggered by emotional distress, but whatever is happening now isn't neurotic.

When he was in his mental health crisis he was still waking up at 5am every day and running his 8 miles like he used to every single morning for his whole life, rain or shine. I understand some people might create health problems by being nervous or whatever, but he's the opposite of that. He's not neurotic at all. I wish he was a bit actually because then maybe he'd take some sick leave. He's more "pull your socks up" in his thinking.

@LocomMotive He was all right today. Exhausted as always, sore stomach, headache, hot and cold sweats. We phoned for a GP appointment this morning. They said there was a month's wait for one! We sent an e-consult instead with a list of all the tests we're requesting so the help here was actually brilliant. We will see what the GP says and if we don't get action, we will go private.

I think part of the problem is that they're treating him like a malingerer. I have known him for years and he is NEVER sick. EVER. He doesn't go to the doctor. HE doesn't take sick leave. He's the complete opposite of a malingerer, but I suppose they probably have a lot of people phoning in with these sorts of symptoms.

OP posts:
IamSaved · 30/08/2023 02:44

Would you rule out Munchausen Syndrome?

tt9 · 30/08/2023 03:00

Redlegged · 30/08/2023 02:27

It's not psychosomatic. It might have been somehow triggered by emotional distress, but whatever is happening now isn't neurotic.

When he was in his mental health crisis he was still waking up at 5am every day and running his 8 miles like he used to every single morning for his whole life, rain or shine. I understand some people might create health problems by being nervous or whatever, but he's the opposite of that. He's not neurotic at all. I wish he was a bit actually because then maybe he'd take some sick leave. He's more "pull your socks up" in his thinking.

@LocomMotive He was all right today. Exhausted as always, sore stomach, headache, hot and cold sweats. We phoned for a GP appointment this morning. They said there was a month's wait for one! We sent an e-consult instead with a list of all the tests we're requesting so the help here was actually brilliant. We will see what the GP says and if we don't get action, we will go private.

I think part of the problem is that they're treating him like a malingerer. I have known him for years and he is NEVER sick. EVER. He doesn't go to the doctor. HE doesn't take sick leave. He's the complete opposite of a malingerer, but I suppose they probably have a lot of people phoning in with these sorts of symptoms.

ignore those comments OP. I was treated the same, only when I went private was I diagnosed.

80s · 30/08/2023 11:47

@Utini It's in German, but here's the link in case anyone's interested. I don't know anything as well-researched in English.

99% of the mystery cases are assumed to be all in their heads for years. Some people even start to wonder if it is themselves, even when the symptoms are so bad it's extremely unlikely.

Utini · 30/08/2023 22:32

80s · 30/08/2023 11:47

@Utini It's in German, but here's the link in case anyone's interested. I don't know anything as well-researched in English.

99% of the mystery cases are assumed to be all in their heads for years. Some people even start to wonder if it is themselves, even when the symptoms are so bad it's extremely unlikely.

Thank you, sadly my German isn't good enough as it sounds really interesting!

Thethuthinang · 30/08/2023 22:50

For autoimmune issues, try the Paddison Diet. It reduced my pain significantly until my medical people figured out what was wrong. It basically consists of eliminating any food from your diet that people commonly react to, then adding things back in slowly.

LocomMotive · 30/08/2023 23:47

@LocomMotive He was all right today.

Exhausted as always, sore stomach, headache, hot and cold sweats. We
phoned for a GP appointment this morning. They said there was a month's
wait for one! We sent an e-consult instead with a list of all the
tests we're requesting so the help here was actually brilliant. We
will see what the GP says and if we don't get action, we will go
private.

Ok, I hope you get a cardio appointment as soon as posible, I do think this could be very important to help solving many of his other problems.

Opentooffers · 31/08/2023 00:55

Autoimmune conditions should show up on blood tests, which he would of had already, that's probably why they didn't refer you.
Fibromyalgia is a lot about pain and fatigue, without swollen joints. There is no test for it, everything does show up negative until that's what is left unfortunately. The bowel bloating could be from the stress of his other symptoms, but also, if his body was used to exercise and now he's not able to and sedentary, then his gut will slow down and maybe that is exacerbating it. Could also look for helicopter pylori or other gut infections.

Opentooffers · 31/08/2023 00:57

It depends where the t wave inversion is as it can be just a benign phenomenon.

DeeCeeCherry · 31/08/2023 01:34

Have you seen a private doctor? If not, you need to at this stage