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!

I don't believe that.

My friend is a positive upbeat person.

It took years of tests and an excellent Rheumatologist to diagnose her.

Stress doesn't help.

I have Fibro and it took years and many appointments for me to be diagnosed (saw rheumatologist, pain clinic and had many, many blood tests and scans). I think he may be bull pooing tbh.

I wish I could perk up when there's something nice planned I've missed out on lots of things I'd love to have done because I feel like shit with my fibro. I also have to push through some of the things I really don't want to do because there no other choice and I'm a woman so have zero fucking choice. However sometimes I try really hard to put on a front and be "perky" and do something the DCs really want to and pay even more for it for days after. It's not a one size fits all and sometimes distraction, willpower and a lot of pain meds work sometimes no matter how much you try they just don't. As to your DH only he knows if he genuinely was told he has it by the GP but many fibro sufferers are labelled lazy when they are anything but

There is so much anger + resentment in your post, no sympathy. You have two preschoolers, likely working your arse off, absolutely knackered + feeling like you are doing it all as if you were a single mum. I get those feelings + have a lot sympathy.
But I think you should also try to put yourself in his shoes. What if it was you who was ill? Or one of the kids? Whatever he has, it seems he feels like crap a lot + its been going on so long you have run out of sympathy.
Without judging, I think this reaction is common in people who have no experience of chronic illnesses. Sometimes people have the idea that being ill is very black + white. You feel ill, get quickly diagnosed with a few tests, then get pills to fix you or you are unfixable. Sadly, there is a huge grey area in between. Millions of people have chronic illnesses, feel crap a lot + just have to live with it. Many illness vary day to day, it doesn't mean they are faking it. For instance chronic fatigue is characterised by post excertional malaise; you feel like crap after doing stuff. It often doesn't make sense to yourself, let alone others; for example, how can a shower be tiring? With generic symptoms, it can take years to figure out whats wrong + its a huge shitshow of lack of support by the NHS.
Without judgement, it may be useful to ask yourself if you'd be acting differently if he was diagnosed with something else? Fibro? Depression? Chronic fatigue? Arthitus? Cancer? Does the label make a difference? Should it?
On a practical level, you need to have real conversations about what he can to do help. I have been in your shoes + it helped to lower my standards + let things slide a bit. Give yourself permission to take it a little easier. For example, kids bathing less, simpler meals out of a can/packet, let the house get messy.
When people feel ill, some push through + try to keep going, while others rest + wait to get better. But if the illness carries on + on, waiting can turn into wallowing. Its important for his mental health that he tries to help himself + contribute to the household. (Not to mention yours.) He is at huge risk of depression if he is in a lot of pain, which the fibro would suggest. For you, your family + himself, he needs to try to help himself + push to find the joy in things.
I also strongly advocate that you get involved with pushing things with the GP, like blood tests + referrals + discussing mental health. In my experience, GPs are more likely to ignore generic symptoms, encourage him back to work + delay tests in the hope it will go away.

If you have a family and young children and can only motivate yourself to do the fun things you enjoy and nothing for your family then frankly I think the wife/partner would be pretty justified in telling you to move out and then maybe you will enjoy your whole life once we aren’t in it and maybe you magically get better or maybe you work out a coping system that isn’t my already overburdened wife cover for me.

You tell him he can see a rheumatologist to get a proper diagnosis, and take on a couple of jobs at home he moves hell or high water to do if he can do the fun stuff, or you reconsider the marriage since you’re alone anyway but get to watch him having fun then put up with him moaning if you ever ask him to do something.

Did you go to the GP’s with him? Because how do you know that he’s telling you the truth? They could just as easily have said that it didn’t sound like fibromyalgia at all, or suggested other causes. Either way he sounds like a pain in the arse. I have endless sympathy for people who have chronic health conditions. Someone who can switch his symptoms on and off to fit whether he fancies adulting today or not just sounds tiresome.

Are you sure that's what the GP told him?? Doesn't seem plausible to me without at least trying some other tests/scans, and a referral to a consultant to rule out anything else..

From my understanding, doctors would need to rule out other causes.

I don’t think it’s a case of “one trip to the GP, and if you feel like you’ve got it then you have”. Otherwise it would be open to massive amounts of abuse. I know that it can be open to abuse as it is, but I’m certain there’s some gate keeping.

I also know it can be a really horrible thing to live with, and genuine suffers are just that - they suffer a lot with it. It certainly doesn’t come and go at a whim, to allow a person to pick and choose what they do.

Sounds like he’s very likely misrepresented what the GP said. At the very least it’s an example of men’s pain / complaints being taken much more seriously than women’s.

This basically

"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."

Nah, you're not stuck with him. If it's not working out do something about it now while the kids are younger.

Nobody here can say your husband does or doesn’t have fibromyalgia.

Yes, it is a real condition. No, that doesn’t mean that your husband necessarily has it.

I have a friend who has self-diagnosed with a number of conditions for which there is no test, and which only appear to affect her when she doesn’t want to do something, or when she notices she can possibly get special treatment (eg a seat at an event for which she bought a standing ticket, or early boarding on a plane etc). I am fairly certain she believes she has these conditions, but I am also fairly certain she doesn’t have them.

It’s very difficult because of course, these are genuine illnesses for a lot of people, with whom I sympathise greatly. And for people who do have those illnesses, it is absolutely horrible to be disbelieved. I’m pretty sure that if I was constantly in pain and people assumed I was making it up, I’d be really upset. So I really don’t know what the answer is.

I think with regards to your husband, there are obviously other issues happening in your marriage, and that frankly, you are probably unlikely to be happy with him regardless of whether his illness is genuine. I also can’t imagine his reaction to being questioned about the veracity of his self-diagnosis. He is unlikely to say “Oh yes, you’ve rumbled me - I was lying” or “Actually yeah, you’re right, I am actually just a massive hypochondriac who is imagining my symptoms”. He is likely to be hurt, defensive, angry or all three. So I can’t see the conversation ending well.

Are all your doctor friends experts in immunology and rheumatology as well as sex differentiated medicine?

Funny how many conditions which are commoner in women are labelled "psychosomatic".

I take a small dose off Amitriptyline for my fibro helps with sleep and pain. I find the better quality sleep I get the less pain and better I eat also less symptoms.
The doctor needs to go through his symptoms to see if any medication can help him.

But don't you think that suggests it is at least partly psychological?

I'm not minimising illnesses affected by stress btw.

There is a reason why most cases of fibromyalgia can be effectively treated with anti-depressants and exercise.

Has he ever had an attack which had effected something he wants to do?

I knew someone who had self diagnosed fibromyalgia. I think it was a sign of other mental issues to be honest. She was absolutely fine whenever she had activities/tickets to events she wanted to do. She would always be very unwell the day after. The diagnosis started when her homeschooled children left home/went to college as well. She got a job and had to leave fairly quickly because of the fibro and using up all her spoons. But okay to go to hobby clubs a few nights a week. I think she was depressed but wouldn’t say it or get treatment.

The symptoms of fibromyalgia (and other invisible conditions) are subjective but it doesn't make them imaginary. However, as other mentioned, there is a process of exclusion that has to happen before a "diagnosis of exclusion" is established. GPs can diagnose fibromyalgia without a specialist assessment but would need to at least perform basic checks (including blood test). Once the diagnosis is established, the patient will typically be referred to either pain clinic or pain management service for ongoing symptom management.
Symptoms of fibromyalgia also overlap with ME/CFS. Again, basic checks need to be preformed by GP before a referral to specialist service for diagnosis and symptom management.
In either of these conditions, it is unusual to see people allocate available resources to enjoyable tasks. Also, people who are unwell aren't supposed to be bedbound at all times for others to take them seriously. There are better days and worse days in almost every medical condition.

This!

I have fibro the diagnosis was made with the examination done by the GP, physiotherapist, rheumatologist and bloodtests (that ruled out conditions like rheumatoid arthritis etc)and based on my medical history.
the GP wont make a diagnosis based over symptoms told over the phone

withour belittling his condition if he does have it and expect to be in more pain adter an activity you proposed i think he shouod get prioerly checked out and assessed,might noe be fibro might be start of arthritis

That's not my experience at all.

They did so many tests to rule out other conditions first. Lupus, rheumatoid arthritis, lyme disease etc

Only a completely incompetent doctor would not want to eliminate other possibilities first.

Are you sure your husband has told you the truth about the appt?

Fibromyalgia absolutely is real. Several studies have found actual physical evidence. Doctors need to stop dismissing it. Its only because it's mostly women that have it that the medical profession has been so dismissive.

I'd love to know where your found the data to support this sweeping statement.

It was a long process when I was diagnosed, lots of scans, mri, blood tests and eventually seeing a rheumatologist at kings hospital who checked all pressure points, also have spine problems which they said is common with fibromyalgia, the pain and fatigue is awful, I've had spinal surgery and need more surgery but I was told a normal gp cannot diagnose fibromyalgia it's normally rheumatologist that diagnoses it

And this is why so many people eye roll you and think fibro is all made up and "in your head". I took me over 10 years to get a diagnosis, people like your DH, and there are plenty of them, are taking the piss

My GP decided I had it a few years ago, threw various pills etc at me and turned me into a zombie. I got the distinct impression he didn't want to refer me or deal with any other possibilities. It was easier to prescribe Amitriptyline and send me on my way.
I knew it wasn't that. Eventually I went to rheumatology where I was finally diagnosed with Hypermobility Joint Syndrome. A condition that explained issues I'd been having since I was 8 years old.