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!

What are his symptoms?

A family member has it and spent years trying to work out what they had and was eventually diagnosed by a rheumatologist.

If he's frequently feeling unwell and suffers from pain, low energy etc he may well have it. Maybe you just get irritated by his symptoms because you notice them when he has something to do?

No advice but much sympathy. My Ex was like this when he had ‘covid’ When there was any work to be done he had ‘covid’ and was isolating. When he was bored he would wander around the house chatting to us and doing things to amuse himself. Then disappear again when meals needed made or housework done so I had to wait on him hand and foot as he was ‘isolating’ with ‘covid’.

This issue aside - what is your marriage like?

I am guessing this is one of many issues

https://en.m.wikipedia.org/wiki/Fibromyalgia

Fibromyalgia can and should be diagnosed by a rheumatologist who has seen the patient, in person.

I have a family member who has wasted years thinking she had this because a GP incorrectly diagnosed over the phone. She has a degenerate neurological condition that could - and should - have been picked up earlier and could have been helped to slow down degeneration. She now cannot walk much.

If your husband REALLY things he is unwell and has assumed fibro he really should follow the correct pathway to get it properly diagnosed in case he is missing out on a diagnosis of something that should be treated now to stop him losing function.

I had a friend with this, woke up one morning with terrible pain in her shoulder and arm, and had severe pain in various parts of her body pretty much all the time from then on, it was diagnosed and she did get treatment but nothing helped very much. Had to walk with a stick after a couple of years. I guess there are milder forms.

I was diagnosed by my rheumatologist after a few years of unexplained pain. I have flare ups every couple of months, but work 50+ hours a week, a single parent so have no choice in keeping my
home in order. Wish I could use it as an excuse to get out of things 🤣.

Note:- this is only my experience, others I know suffer worse than I do.

edit- I also take gabapentin and amitriptyline for the pain daily

Yes Fibro should really be diagnosed by a Rheumatologist and other Rheumatology conditions should be ruled out first.
Fibro is a tricky condition because it’s usually caused by/exacerbated by stress. In theory it could be that when he’s motivated to do something he enjoys, he can exert himself. Typically with Fibro though, if you push yourself, you pay the price of fatigue afterwards. Also it’s very difficult to treat because there’s little medication that helps.
My XH (note the X) had ‘anxiety’ that seemed to peak when he was asked to do things but he could engage when he chose to. Really for him, it was about disengaging with family time, not prioritising me or DD and a sign of underlying issues.

did you go to the GP with him or is this his version of events?

That must be annoying. Can you split the chores and tell him he it doesn’t matter when the jobs are done, but they have to be done.

Or find your own special illness.

Doesn't sound like you have any respect for him (I don't think I would either with that behaviour). Maybe its time to call it a day on the marriage, be one less dependant to care for.

What are his symptoms?

It is not a self diagnosed condition no, it's diagnosed by ruling out other conditions because there is no test for it itself. It's usually diagnosed by a rhumotologist.

It is possible he does feel ill though and if an activity is something that he wants to do he has higher motivation to push through how ill he feels compared to the stuff he doesn't want to and therefore isn't motivated to do. There is this general idea that if you have a chronic illness you should just be sick all the time and that's not the reality. I would often use up my energy doing the things that I perceived brought worth to my life and then had very little energy left to do chores etc. Or I could just do chores but then my mental health would dive because my life felt empty as I had no energy for what brought me joy.

If he suspects he has fibromyalgia he needs to make sure the drs rule out other more serious things. A Dr won't just diagnosis if randomly though so he must present with enough symptoms for the Dr to suspect it could be for them to say that.

I doubt he went, and if he did , I doubt the doctor said that.

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

My doctor thought I had it, extreme pain in my legs and feet. I was sent to the hospital for tests and it is rheumatoid arthritis and it's possible for the medics to know your pain level from a blood test. When I've had a flare up, blood tested and medication adjusted.

My dh has health anxiety. It can be frustrating as he self diagnoses with conditions I’m sure he doesn’t have. I have learnt that in fact the best way to help him (and the quickest way for him to ‘recover’) is to try to fully engage with his feelings. Generally he feels unwell, vulnerable, scared and the self diagnosis is the way he tries to legitimise and understand and ultimately communicate his feelings. The worst thing I can do is tell him to pull himself together. I try to empathise with his feelings and help him to deal with his symptoms, whilst still being clear that family plans and commitments must go ahead.

Is it possible your dh has health anxiety too?

I think the fact he is “ill” when he doesn’t want to do stuff and fine when he does is probably not a symptom of fibro. What’s he like generally, is he otherwise a decent bloke, does he miss a lot of work with it, or is it just domestic/family stuff he avoids?

I left my ex for many reasons but they included his laziness and malingering/milking any “illness” so bear in mind I probably have a cynical attitude, but I’d be keeping a diary of when he’s fine and when he’s not, tracked against what’s happening that day/what he’s being asked to do. Then you’ll see how much of a pattern it is and if it is, I’d have it out with him.

He would need everything else ruled out first. Imo it's a lazy diagnosis mainly given by GPs who don't want to investigate. He need a referral to rheum and at the very least full bloods, ct scan, ultrasound. My DM was diagnosed via her GP and later found to have 2 autoimmune diseases which had they been found earlier could have been treated a lot better.

It took quite a lot of tests for me to be diagnosed with fibromyalgia. Recently saw the rheumatologist for something else and she did the thumb test and said I had 18 out 18 points now.

My fibro was under control for a long time until I had covid which is why I'm now under rheumatology again.

I have known people who have self diagnosed.

Fibromyalgia is basically a chronic pain condition.

There is a sense in which it is self diagnosed as only he can really say whether he is in pain.

In the U.K. it's not normally diagnosed until other stuff has been checked out first - so for example my DD who was diagnosed with fibromyalgia was checked for rheumatoid arthritis, full blood panel etc.

If someone is experiencing chronic pain he should really be checked out by a specialist, probably a rheumatologist as it could be something serious.

In the end my DD was found to have hashimoto's thyroiditis and now needs medication for life.

However, speaking as someone with chronic pain, one of the best ways to deal with it is distraction. So when I'm doing stuff I want to do I feel much less pain because I'm engaged in what I'm doing. When I'm doing my chores.... much less so.

I actually think it's highly unlikely that a woman would have been given this advice by a GP straight off the bat.

There is no set test for fibromyalgia, but it is a diagnosis of exclusion and there are other conditions that can cause similar symptoms and need to be excluded.

There are also typical points in history and examination (big but - not everyone presents typically).

However, I agree with PP that there must be more going on here in the marriage and the illness, whatever it is, is probably the tip of the iceberg.

I have had random pains, headaches and general feeling of unwellness for years. Dr did loads of blood test to look for auto immune diseases and they call came back fine. I struggled on as I thought it was probably all in my head. Eventually a physio suggested I might have psoriatic arthritis. Around this time I had another flare up of symptoms but they were worse in that I had visible swelling and could barely walk. GP put me on steroids for a week and I felt amazing on them. He sent me to a rheumatologist who said it was likely psoriatic arthritis but that I also had "fibromyalgic symptoms". I had multiple active trigger points, terrible fatigue and headaches. I started taking methotrexate which he said would make work for both. I am on it years. Every now and then I take a break and within a week I feel like I am coming down with a flu and remember how bad I used to feel.

Fibro is diagnosed when other causes are ruled out,. It is easy to fake as it is diagnosed when nothing else is objectively wrong with you and you have all the "right" symptoms. No one can say you don't have it.