My husband's "fibromyalgia"...

[MysticMary]

I've posted before about how my husband will always start to feel unwell at any time he is expected to do something (ie most weekends). Due to the pattern and nature of his "symptoms" and the fact that he is able to suddenly perk up when there is something he does want to do, I've had little sympathy for this. When he says I'm being callous I tell him that if he felt that bad he'd go to the doctors and see what's going on.

Anyway, a few weeks ago he read up on fibromyalgia and decided he probably has that. Off he went to the doctors, and to my surprise the GP basically said that since there is no test for fibromyalgia then if he feels the symptoms fit then he can say that's what he's got!!

My friend has fibromyalgia, and whilst I know it's different for everyone, I just don't think DH has got it. But now I'm stuck with a useless husband who has a "bad fibro day" several times per week and now I'm not even allowed to challenge it.

So, anyone who has/knows about fibromyalgia... Is this right?? Surely it's not purely a self diagnosed condition?

Sorry if I do sound unsympathetic to my husband, but we have two preschoolers and I need all the help I can get!

Sorry, this was supposed to be a reply to someone who said similar

It’s not a self diagnosed condition and I’d be amazed if a GP diagnosed it like that. Dd was diagnosed by a consultant rheumatologist but only after lots of other things were ruled out.

They are not. MS was once termed 'hysterical paralysis.'

The only person I know ‘with’ fibromyalgia is my nephew’s wife who is the laziest person I’ve ever met, so every day is a fibro day for her.

I don’t doubt fibromyalgia is a ‘thing’ but it can be used by some people as an excuse when they only suffer from hypochondria or laziness.

@Flipdiddle yes that's my point, but I never ran around self diagnosing myself and looking for pity points

I find it a bit disturbing that it’s fine for Medics to apparently diss an insidious illness.

Please explain why medics should they not be able to express an opinion about a condition for which there is no diagnostic test? Medics rely on evidence based practice it is understandable that there may be a degree of cyncism about something for which there is no physical evidence that exists to support a diagosis. I find it disturbing that you want to control what medics think!

Lots of things being confused here @SiousieSoo

There's heaps of recognised disorders that do not have a objective marker or "physical evidence" you can test for (I assume that's what you mean by "diagnostic test") - migraine for example. For these you rely on a patient reporting symptoms to recieve a diagnosis.

This is unrealated to "evidence based practice".

I mean it in the way that Drs are practitioners of medicine and the practice of medicine is based on evidence that is used to support diagnosis and treatment. That is a fair point about migraines but usually the condition is soo debilitating that it is obvious and the fact that symptoms can be relieved with treatment supports the diagnosis as real. With fibro the condition can often 'flare up' when it suits the patient and hence this is what leads to the cynicism. The general point of my post was that I think it is very strange that someone wants to find it disturbing that medics would express a view point about what is a contentious condition.

Agree with above.. my mother has it but has several other ‘issues’. My BIL (consultant) and physio friends all say similar to above re fibro patients..

How can it be contentious?

Its a recognised condition. It’s even in NICE info.
So even though there’s guidance on how to treat it doctors don’t believe in it?

Good job they don’t think that about epilepsy or heart disease.

How can it be contentious, are you for real? The post that you responded to was based on someone saying that her Dr friends don't believe it to be real... Stop being so silly and comparing it to a heart condition or epilepsy. Have you read the comments on this thread? I will help you out:

YANBU. I’d have zero sympathy. All my doctor friends say they don’t see fibromyalgia as an actual illness. It’s psycho-symptomatic. He needs to help himself feel better
Agree with above.. my mother has it but has several other ‘issues’. My BIL (consultant) and physio friends all say similar to above re fibro patients..

The only person I know ‘with’ fibromyalgia is my nephew’s wife who is the laziest person I’ve ever met, so every day is a fibro day for her. I don’t doubt fibromyalgia is a ‘thing’ but it can be used by some people as an excuse when they only suffer from hypochondria or laziness.

Even on Miranda Sings it is used as a talking point because the malingering motehr says she has it.. The fact that it is referenced in popular culture in this way and the way it is talked about shows that there is some contention around it. In fact it is the very point of this thread that you are commenting on...Bizarre.

Wouldn't he rather have investigations carried out by a Rheumatologist and only once everything else has been excluded, then he gets the 'Nothing can be done, you'd best get used to being constantly in pain and exhausted' diagnosis?

After all, if it's something else, there's a good chance it could be something that can be treated all the way up to and including complete remission of symptoms for years. It would be pretty shit if he missed out on treatment that could prolong his life, rather than cut it significantly shorter from being untreated (untreated inflammation and autoimmune disease reduces lifespan considerably and can be a cause of dropping dead in your fifties, as my father found out), just because a GP said 'if that's what you think you have, I guess you've got it, then'.

Op just leave him. He sounds fucking useless - you don’t even like him. You could be with someone nice.

Absolutely, if he was genuinely unwell. Not just being unwell when there is housework to be done.

I was diagnosed with fibro in the 90’s. It was not diagnosed after one doctors appointment. I had tests for different conditions, and saw different doctors, it took years.

I do get flare ups, but not at convenient times.

His GP is wrong or just fobbing him off or he's lying to you about what the GP said. You can't self diagnose and a heap of testing plus a specialist, usually rheumatologist or pain specialist, is needed to end up with a valid (accepted by health system, disability system, work) diagnosis of Fibromyalgia. Anyone could say they have it, that doesn't mean anything. The NHS aren't going to treat him without a valid diagnosis. There are treatments though they don't work for everyone. He's not going to be able to get a blue badge or PIP or anything else without an actual diagnosis. Him saying he has it doesn't mean anything at all. If you believe he's faking and you don't want to be with him anymore then LTB.

Take what @ChipButtiesRule has said and force him to take this further

When you have limited energy resources, it is very depressing to use up that energy on things you don’t enjoy and that you get no pleasure from, as then you have no energy left for anything you do enjoy so life becomes nothing but pain discomfort and drudgery.

How he is describing things is very common with many autoimmune condition. However regardless this marriage isn’t healthy as either he is faking it all or he is sick and you are unable to be supportive or care at all. Either way, why stay? You clearly don’t like him.

Were you there when the dr said it? From my experience drs usually check for everything else and diagnose once all other possibilities have been ruled out. So it seems unlikely.

Could it be stress related I get lethargy , face pain, blocked nose and headaches when I'm stressed.

I doubt he will change you need to decide wether you can live like this.

They need to consider history and keep an open mind. Even MS was once considered a mental illness because there was no apparent evidence for it at the time.

They are not. MS was once termed 'hysterical paralysis.'

Maybe some people were misdiagnosed as hysterical, but obviously it'd eventually become clear if the person has MS because, unlike with fibro and CFS, they end up getting clearly objective symptoms including sometimes sadly, death.

'Objective' is only relative to the tests at the time to diagnose.

Cfs especially has plenty of objective symptoms which don't currently show up in the standard NHS tests. That will change eventually. There have been deaths due to it too - look it up

I agree 100%. This thread makes me so sad. I was a happy, hard-working, 41 year old mum of teenage twins when I was struck down with shingles 4 years ago...from there I ended up with post-herpetic neuralgia in my head, recurring bouts of shingles (I have one now brought on by stress) and last year was finally diagnosed with autoimmune inflammatory arthritis. I am always in pain. Always. Some days less than others so I am.able to do more and I tend to push myself too far for family things that I see as important (particularly with my kids). I have little social life and have been off work for two years now. It's horrendous. And what makes it 100 times worse is the constant fear that people don't believe you. Because you can't see the pain. I look normal if a little tired. So I have a choice of pretending to be ok and getting on with things which generally ends up in a huge crash, or constantly telling people I feel like shit...and then they must think I complain a lot.

I'm sorry OP but you don't sound very kind. Unless you married and absolute arsehole then you should have noticed the change in your husband when he got ill in which case you should be doing everything you can to help him get a diagnosis and treatment.

I understand it must be hard to be a partner of someone in pain. I constantly tell my husband he can leave if he wants lol. But seriously just talk to him and ask him what he feels like and make a plan together to work through it. You might find if he feels more supported by you he may well choose to push himself more to do things to support you too. It works both ways .

@Monwmum thats so interesting. My dd is so poorly with various conditions and everything started when she got shingles at 13yo. Was like a switch being flicked, she was fine before. She’s since been diagnosed with fibromyalgia, POTS, elhers danlos syndrome and coeliac disease. She’s had pulmonary embolisms, is on blood thinners for life. Chronic anemia and no energy. Nhs have written her off apart from prescribing iron supplements they’ve said nothing can be done.