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Relationships

Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently or expert advice, please see our domestic violence webguide and/or relationships webguide. Many Mumsnetters experiencing domestic abuse have found this thread helpful: Listen up, everybody

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.

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fabmaccawhackythumbsaloft · 28/08/2023 00:05

Please just rule out Lyme . It could be a number of things but Lyme is treatable with a month of doxycycline so it's worth checking

Honestly my life has become untenable over 2 years and all because of a tick bite .
If he's outdoorsy it's worth checking and ruling out .

I'm not that outdoorsy but I did walk my dogs off the beaten track , also rescued hedgehogs (often riddled with ticks ) and could even have been through work at times . I'm amazed such a tiny creature can wreak suck havoc- and I never knew I'd been bitten. Never saw a tick and didn't have a rash .

fabmaccawhackythumbsaloft · 28/08/2023 00:11

My inflammatory athritis stated in my knee , then spread to ankles , hands , elbows , wrists

Rendered me unable to get up or down stairs , on or off loo

Bloating - had that . Vomiting . Nausea . Involuntary jerking in arms and legs , tremor , brain fog , pain in limbs without explanation, fatigue which meant I slept 18 hours a day some days , and culminated in optic neuritis when I lost sight in one eye . Was in hospital 5 days on IV steroids to try and save my sight That's was triggered the hospital testing me for everything - markers in bloods showed my body was trying to fight something - took 4 weeks for hospital opthalmology and infectious diseases to find it .

None of my symptoms made sense and were very non specific.

LocomMotive · 28/08/2023 01:05

Has he been refered to a cardiologist ?

tt9 · 28/08/2023 02:11

has he been tested for coeliac disease? I would reccommend seeing a private general medicine consultant. if you tell me what region you live in and your closest big teaching hospitals, I can do some research for you. I was in a similar position with unexplained symptoms 15+years ago, NHS fobbed me off, then misdiagnosed me (and made it a lot worse by the treatment they gave) and it took going private to diagnose me. After diagnosis however, NHS has been fantastic.

RiverSwift1 · 28/08/2023 03:35

Three things maybe to consider: Lyme disease, Fibromyalgia and/or EMR sensitivities.

Maybe a good way to test if it’s something your partner is sensitive / allergic to, would be to go away from your home and live very basically - kind of instead of a food elimination diet an environmental elimination test.

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. It helped work out it needed to remove or limit some things, before I could start to recover. How would he feel about going camping for a week or two leave everything behind (well keep the cell phone in the car for emergencies) take a few paper backed books and good healthy food and have a break, somewhere that’s off the beaten track eg setting up the tent (buy second hand if you don’t have one- as new ones would have higher concentrations of chemicals in them) in the middle of a forest with a stream to bath in – trying here to recommend totally away from everything as we’re seeing if it’s something he’s being exposed to.

Just generally gut health should be valued more in this world. Maybe pick up some water or milk kefir grains and make your own, both contain many more beneficial bacteria than yogurt, it might help

I see you mentioned he’s on a more vegan type diet? How would he feel about introducing a little meat? I understand you might be limiting it for ethical reasons but if it’s more for health reasons? Maybe organically raised? or wild caught eg fish

Longlive · 28/08/2023 04:06

Has he been tested for Lupus. I have it and have a lots of his symptoms.

User893432374902zzx · 28/08/2023 07:04

Low testosterone? Have blood tests been done for that?

Redlegged · 28/08/2023 10:15

Yes, tested for Lupus and that was negative.

His rashes were on his hands and feet like itchy eczema type thing.

He got a rheumatology referral but only the physiotherapist actually saw us and he said there was no swelling of his joints and diagnosed fibromyalgia on this basis. They didn't even bother to have the rheumatologist examine him.

He's just been referred to the chest clinic.

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NeverDropYourMooncup · 28/08/2023 10:17

Longingforthesummer · 27/08/2023 23:02

Other symptons she details are:
"Breathing issues, rapid heart rate, skin burning, anxiety, joint pain, fatigue, brain fog, breakouts, throat swelling, and other autonomic dysfunctions"

Yup, that's why I mentioned seronegative RA or Psoriatic Arthritis in my earlier post. Both treated with medication.

Redlegged · 28/08/2023 11:35

I was sure it was RA but they fobbed us off.

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1Step2Step · 28/08/2023 11:39

lyme disease

stayclosetoyourself · 28/08/2023 11:41

Redlegged · 28/08/2023 11:35

I was sure it was RA but they fobbed us off.

Fobbed you off or could not diagnose as not the diagnosis ???

CollagenQueen · 28/08/2023 11:48

Is he consuming any SOYA? I see you're vegan. Does he drink SOY milk? My DD started to consume SOYA products, as she was found to have an intolerance to dairy. It made her SO very poorly. She was vomiting daily for months. The NHS couldn't get to the bottom of it. She had exams with camera's down her throat. A lady in a health food shop suggested that she cut out SOYA, and hey presto, she was cured. Apparently SOYA is incredibly hard to digest and can cause all sorts of problems if your body doesn't like it.

tt9 · 28/08/2023 12:07

Redlegged · 28/08/2023 10:15

Yes, tested for Lupus and that was negative.

His rashes were on his hands and feet like itchy eczema type thing.

He got a rheumatology referral but only the physiotherapist actually saw us and he said there was no swelling of his joints and diagnosed fibromyalgia on this basis. They didn't even bother to have the rheumatologist examine him.

He's just been referred to the chest clinic.

how can a physiotherapist decide a rheumatologist doesn't need to see him. utter tosh.

another diagnosis to consider is phaeochromocytoma...

I definitely don't think it's psychosomatic, there are a number of red flags there that need proper investigation.

glad you have decided to go private. got my fingers crossed for you

heartofglass23 · 28/08/2023 12:11

MS?

stayclosetoyourself · 28/08/2023 12:12

Are you sure it was a ohysio? Do you mean the CMAT team maybe for musculoskeletal issues ? That's got nothing to do with rheumatology . Different referral.

stayclosetoyourself · 28/08/2023 12:15

I'm loving the endless random mention of myriad diagnoses from armchair google doctors while the NHS doctors get a massive slagging off.
And since you haven't bothered to even reply to my comments I'm off.
Doctors have to be rational and methodical they can't just refer to every single specialty.
Go back to the GP and say you are not happy.
You haven't even said what the heart problem is and why he has had a chest referral !!

Speach · 28/08/2023 12:16

Did they only do camera on his bowel or has he had a stomach one too?

Redlegged · 28/08/2023 12:17

@stayclosetoyourself I do feel they've fobbed us off. 18 months it's been going on and they do tests and then following up is a struggle. I cried from relief when we got the rheumatology referral and then the rheumatologist never even met us.

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stayclosetoyourself · 28/08/2023 12:18

Can you answer my queries?
Chest and heart

Redlegged · 28/08/2023 12:18

@stayclosetoyourself I was replying. DH isn't well this morning so I'm reading and answering as best I can

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stayclosetoyourself · 28/08/2023 12:23

Go back to the GP if he is unwell I don't think a thread will clarify things as there are so many random suggestions it may distract from what's wrong

Redlegged · 28/08/2023 12:25

@stayclosetoyourself he has inverted t waves. I did say that earlier on. He was in hospital a few days ago as they were concerned he'd had a small heart attack (he hadn't) so we are waiting to get a referral for the chest clinic.

The physio we saw was in the muskoskeletal unit so assuming their speciality would be rheumatoid style diseases? Anyway he checked his body motion and examined joints and said he didn't have RA and then closed the file basically.

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SeaToSki · 28/08/2023 12:26

Has he had just one type of test for Lyme or the full panel for all the tick bourne diseases.

Have you considered PANs/PANDAs. He might have had it in childhood and it has rebounded, or he might be adult onset

https://www.psychologytoday.com/us/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find

Adult PANDAS: Seek and Ye Shall Find

The prevalence of PANDAS in adults is remarkable if one bothers to look!

https://www.psychologytoday.com/us/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find

Redlegged · 28/08/2023 12:27

@Speach just bowel

@stayclosetoyourself yes. We will. Its just been about 18 months now and they dont really do anything. I've phoned and literally sobbed down the phone and I just feel he's hugely deteriorating.

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