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!

As previous people have said, it is a serious illness, and it not something you just diagnose yourself. The GP is correct in that there is no specific test for fibromyalgia, but there are tests to rule out other conditions with similar symptoms. This is generally done by a specialist called a rheumatologist, who by a process of illimination and probability will determine a diagnosis of fibromyalgia or not. I feel your husband has taken your GPs words out of context, accidentally or deliberately, and arrived in your current situation. Could you imagine going to claim PIP or some other disability benefit based on your Google based self diagnosis... What would his employer say if he asked for reasonable adjustments based on his feeling he has a life changing illness... If he believes he has it, make him follow through properly with a professional diagnosis. I would also add that I am male, so he can't accuse me of man bashing if that helps. 😸

Wow, you can conclude that about a man you have never met or spoken to, and presumably without any medical qualifications either (apologies if you do have those).

All of the doctors in my family say the same.

One of the symptoms is waking up and not feeling refreshed. I don't know any adults who wake up feeling refreshed! We all drag ourselves out of bed after snoozing our alarms multiple times.

It took me three years and numerous GP visits, tests and rheumatology appointments before I was diagnosed with Fibro. Fibro isn't a diagnosis in itself, but a collection of symptoms that have ruled out any other (testable) diagnosis.

Fibro ruled my life for many many years. Even now ten years down the line, I forget how many allowances I make compared to normal people. The one thing I've learned...Fibro doesn't bugger off because I want to do something. I'm having a bad day or I'm not. My feelings about what I want to do that day don't come into it. I've missed many many things that I wanted to partake in due to Fibro.

So yes, if I was in your shoes I'd be disbelieving and telling him it's not Fibro. Sounds like he's taking the east option in life.

This. It is known as a "dustbin diagnosis".
Some people may experience genuine symptoms, but the OP is obviously suspicious that her husband has jumped on a bandwagon. Maybe they have more that they need to discuss, as a couple.

Mine was also diagnosed by a Rheumatologist after a lot of other tests, including blood tests.

And for the people saying it's not a real illness. Bullshit. Sleeping for 18 hours a day, pain constantly. Falling asleep walking. It was NOT in my head. Neither was I depressed.

Yes, because his supposed illness only happens when he has to do housework or take care of his kids. He's fine when he wants to do fun stuff.

Ergo - he's a lazy twat

Just get rid of him OP. How can you possibly have any respect for a man who constantly claims to be unwell every time you ask him to help you? A chocolate teapot would be more useful.

My 18yo DD was told she had fibro by the GP after a few blood tests. Shoved her on anti depressants for the pain. They did nothing - one lot did make her almost suicidal though.
She pushed for a rheumatologist referral who was stunned by the GPs 'diagnosis'. Turns out she has hypermobility syndrome and has been given physio to help strengthen joints etc. as well as tests to check her heart etc.

I’m working so hard on this. Years of pain led to huge loss of muscle.
Diagnosis and medication means I’m now recovering, but having to work so hard at it. My capacity is pathetic.

The thing is she seems to know in advance that she will be fine to go on a long haul flight and active 2 week holiday, for example.

I do believe in Fibromyalgia I’m just not sure she has it. I think her issues are stress related so equally valid in a way. But she wasn’t properly diagnosed by a specialist only her GP after blood tests ruled out anything obvious. It was more a suggestion that it could be Fibromyalgia but she believes it is 100% that.

Its no issue to our friendship but I understand the frustration of @MysticMary if her husband’s symptoms seem to come and go depending on whether he wants to do something or not.

My fibromyalgia was diagnosed by GP and rheumatologist as EDS was a possibility.

The way my symptoms interact with life is interesting. I can’t overdo it, whether for fun stuff or chores. I can’t afford enthusiasm or excitement- it’s knackering and leaves me wiped out. I get flashes of the old me fight through occasionally and I have to rein them in for fear of getting wiped out.

Basically I have to ‘potter’ at everything.

Stress makes it far far worse, but it’s not an excuse for avoiding necessary things.

One fibro friend loves jogging and another runs marathons. It’s hugely different from person to person.

re your partner- he may be depressed and have underlying mental health issues that need addressing. He may have fibro (though his gp experience is unusual!).

Whatever, you need to resolve it together, not by him shutting you out. The household is a joint enterprise and needs both of you to figure out how to manage it.

And to be honest of you believe he’d lie about a diagnosis then I’d think it’s over, anyway.

Just as an example of the weirdness of it- being around my mother makes mine far far worse. I get pain in my neck and shoulders from speaking or rather listening to her.

It’s real pain.

Thank God l don’t see them for Chronic Fatigue. My GP is a ⭐️

Surely, if he went to doctor he would at a MINIMUM, & a STARTING POINT, have had a blood test.

I'd say to him he needs to pursue this with follow up tests, rheumatologist rdv, etc to confirm ! If he refuses Id tell him Id don't believe in his diagnosis bull it until he does

I only know one person who has it and my experience of it mirrors yours - it seems to "flare up" when it's convenient for her.

She doesn't do anything she doesn't want to do, basically. Too ill to work or to do anything for anybody else or requiring any effort, but she's fine when it comes to her very active social life.

Fibromyalgia is not a psychosomatic illness. If your husband's GP suspects this then they should refer to rheumatology not just issue a diagnosis on the basis of a 10 minute conversation. The waiting times are long though and like many chronic conditions self management is an important part of learning to live with it.

My husband has fibro and it can be very debilitating at times, but it fluctuates so there are times when he can do more. There are days when I have to take up the slack, but as I have Long Covid there are times when he has to do everything because I am so fatigued. We take turns. When you have kids opting out completely is not an option. He needs to read up on pacing it will help him have better management of his energy and pain.

fibro.org.uk/pacing/

The Pain Free Mindset by Dr Deepak Ravindran is also a good guide to managing chronic pain and the various pain management options (medications and alternative therapies).

www.kcl.ac.uk/news/new-study-shows-fibromyalgia-likely-the-result-of-autoimmune-problems

I wonder how the replies would be if this was a man posting the same about his wife and her "fibromyalgia"

If someone is skeptical about the very existence of fibromyalgia - they are hardly likely to change that view according to gender

It's a psychological illness

What tests did he have before the diagnosis?

My GP told me I had it after numerous blood tests, multiple nerve tests, mri (to rule out ms) over several years. Then referred me to a rheumatologist who confirmed the diagnosis. Twenty years later they think they diagnosed it wrong. I have Lupus which needs treating to prevent damage to the internal organs, which is awesome news to hear after twenty years.

Even if he is telling the truth about the GP he really does needs tests and a referral. What medication did the GP start him on?

This.

I have a friend that has had this for years.
Unfortunately because she is a widow she has had to manage her at times severe symptoms.

You have a long life ahead of you.

Think long and hard about whether you want to spend it with someone that you believe is not genuinely unwell.

I suspect your suspicion is not in isolation but part of a pattern of behaviour.

Stop having children witj him for a start.
You are going to be a single parent in name only if you stay with him.

Reach out to your family for support.

YANBU!
As someone who has a debilitating condition but still manages to do the housework etc this would annoy me too. My DP has to remind me not to do too much. My ex was like your DH though, he was always ill (usually with the shits) whenever he had to pick up the kids or do anything that involved my family but was always fine when doing what he wanted or when his family visited. It was infuriating! I actually used this as an example of unreasonable behaviour in the divorce petition. He was even admitted to hospital for a week once with mystery pain that they couldn’t find the cause of. 🙄
I heard recently from the DC that he’s on a final warning for sporadic absences in his job so clearly he still hasn’t had a diagnosis of anything yet.

My ex boss was a rheumatologist and he said about 20 years ago that it was what they came up with to shut people up. However I think the thinking has changed now.

I saw a rheumatologist last week as have an inflammatory arthritis and after prodding me in various places he stated to talk about generalised pain disorder and in terms about how the brain interprets pain, it gets trigger happy effectively and lack of sleep involved in it. Or something like that, I was more focused on remembering my meds schedule. He has written possible fibromyalgia on letter to GP.