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!

To add, there is also a big study in the U.K. currently to explore the genetic factors and links to other diseases since as thyroid are also shown

Do you know the name of the study please? My sil has coeliac disease, fibromyalgia and a thyroid problem which meant she had to have some of it removed. Again for her she was ok and then everything hit her at once in her 40s.

The other thing to think about (generally with autoimmune stuff like fibromyalgia, not necessarily for OPs dh) is the lack of medical knowledge about conditions

my dad went from being fit and well on a Friday to feeling awful with what he thought was a bug over the weekend. I took him to the GP on the Monday and the GP called an ambulance. He didn’t leave hospital for six months, they thought he was going to die various times. They said it was autoimmune but he never got an actual diagnosis.

the specialist in Cambridge said to him that they have named maybe 80 autoimmune conditions which is an improvement on the 20 or so a few decades ago. But he said there’s probably hundreds more.

I don’t necessarily think dd has fibromyalgia. But quite possibly she has something which hasn’t been medically discovered yet. It’s not a good diagnosis because imho it’s a bit of a fob off. Though I understand why. But any issue you have for the rest of your life will be put down to fibromyalgia because of your diagnosis by doctors with little time or interest to properly investigate stuff. Including chest pain which after 4 appointments turned out to actually be a PE which nearly killed her. A friend with fibromyalgia has similar issues and is trying to get the diagnosis removed off her records as she doesn’t believe it and wants more investigation to rule other stuff out

https://www.decodeme.org.uk/portal/

YANBU and I say that as someone that has fibromyalgia, I've been very ill for years and now disabled and in a wheelchair but I was diagnosed at the hospital after having different tests done by a rheumatologist.

Fibromyalgia is shit and it effects every aspect of my life but I'm married and I have 5DC and a DGS so I'm always trying and Pushing myself, I never ever use my illnesses or disabilities as an excuse.

Your DH may have been diagnosed but I'd be surprised at your local Dr being the one to diagnose him, I know 2 other people that have fibromyalgia and all 3 of us were diagnosed at the hospital after multiple tests.

Or what's more likely is that she's in a lot of pain and has significant fatigue every day and you have decided that that's actually laziness.

@CormorantStrikesBack that's so sad I'm so sorry. Shingles is a terrible disease and I think has a significant impact on the immune system. I have kind of been written off in that regard too although I did pay to see an infectious diseases specialist in Harley Street but it didn't achieve much. There are lots of FB groups about shingles and things that have helped people.

I think many viruses can cause issues like long COVID...people had post viral issues long before covid appeared.

Good luck and keep pushing

He just sounds like a slacker tbh
Why do you put up with him?

I was beating myself up today, thinking that maybe I wasn’t having a fibro flare and was just being a negative Nelly. Perhaps my bad attitude was the issue, not reduced energy and pain/stiffness. I gave myself a good talking to.
Then I nearly fell over trying to get out of my car and walk to the ticket machine.

sadly while we don’t understand the mechanism, and it covers a range of symptoms, it is real and can be debilitating.

I really hope those of you quoting medics suggesting it’s not real, just misunderstood them.

Those who have it usually have trauma or extreme stress in their background. Something about that and disrupted sleep seems to trigger an over sensitivity of some kind.

The people on an NHS programme I did were tall and thin, short and fat, young and old. None of them lazy- the course requirement will have weeded lazy ones out, to be fair. All different.

But- all female. All with trauma history- DV, car crash, massive caring responsibilities, parents of children with autism etc. All tending to prioritise other people’s needs and be one of those ‘go to’ people when you want stuff done. The course leader described us as over achievers.

So to my fellow fibro friends out there- solidarity! It’s crap. Most people believe you and know you are doing your best.

I remember your previous thread.

This man is a lazy selfish fucker who wants to opt out of family life and anything that doesn’t suit him.

You know what you have to do.

This! I’m so disgusted by some of these comments especially @PinkRoses1245 doctor friends. They sound like they need some training and empathy. It’s awful I suffer from m.e and unfortunately have had to cut off family as they don’t understand and think I’m lazy.

If fibromyalgia and ME 'aren't real' then why can't people fibro or ME them give blood or be organ donors?

Yeah I’ve got CFS. In a crash at the moment, too weak to get out of bed.

I hate it and just want to do stuff for my family.

Is this relevant? My friend can't give blood due to her naturally low weight and frame but it doesn't mean she has a medical condition. She is incredibly slim with a tiny frame and perfectly healthy.

Is this relevant?

Of course it's relevant. This isn't a thread about your underweight friend, it's a thread with posts about doctors not believing fibromyalgia is real. If it isn't real, why can't sufferers give blood or donate organs? Someone must think it's real and they must think there's blood antibody involvement or they'd be able to donate.

I think you misunderstand: I am simply stating that they exclude people from donating blood without a medical condition. I believe in Australia you can donate blood with fibro if you have no symptoms or if you are not on medication, so this stance is not universal.

https://www.lifeblood.com.au/faq/eligibility/medical-conditions-and-procedures#:~:text=I%20have%20been%20diagnosed%20with,symptoms%20or%20required%20any%20medication.

I'm fairly sure GPs are supposed to rule out every other cause before diagnosing Fibromyalgia, which means distributed pain of unknown origin.

@Flowerty I didn't know that and I've had Fibro for over 20 years, even the Rheumatologist didn't mention anything last year. Would you mind posting or DM me the link to the relevant information please?

I think you need to take this very, very seriously OP. You need to insist on him pushing for a referral, despite there likely being a waiting list. You need to stop him from over exerting himself, for his own good. You need to help him notify his friends that he's likely got a chronic condition and is awaiting diagnosis and in the meantime he needs to reduce his activities, to keep his strength up. You need to check if there are any dietary things that can help. Perhaps he needs to cut out sugar and meat? Gluten or dairy? Reduce processed carbs? I hear yoga can help people reduce flare ups, so perhaps he needs to look at some gentle yoga too.

I mean, this is clearly S-E-R-I-O-U-S. You wouldn't want him to think you don't care.

Yes my exh’s family were horrible to an aunt by marriage of his who had fibro and ME. Always accusing her of malingering.

Seemed quite apparent to me that the poor woman was in an abusive relationship with the uncle but it was all her fault in their minds.

I can't say if OP's husband has it or not.

What I can say: Most of the people I know with fibromyalgia are in genuine pain. One really was a conversion from stress -- once she quit her horrible job she got better.

Two turned out to have other autoimmune diseases, that had been missed: because fibromyalgia is also used to shut women up. One was lupus.

I know one person I suspect might be full of shit. The others? They've got something. The diagnosis might not be correct, but they're not faking.

I had to be diagnosed by a rheumatologist, not just go to doctors & tell them my symptoms, it took me nearly a year to get a diagnosis, I was beginning to think I had rheumatoid arthritis. If he genuinely had Fibromyalgia, he would be on painkilling anti epilepsy drugs, like gabapentin or Pregablin & drugs to help sleep. He would have had lots of blood tests & if he has been to rheumatology, probably Xrays of his larger joints, elbows, shoulders, neck, spine, hips & knees.

I've just been diagnosed with it. I was being tested for MS, which should give some clue as to the sort of things that prompted it.

It pays no respect to my wishes. At times when there's something I really want to do (or have to) I'm often doing it through a wall of pain & fatigue. There's nothing predictable about it, and it's certainly not optional.

Not everyone with Fibro takes meds, I don't

No but someone should be doing what they can, within reason, to try and take care of their health and improve symptoms, which means trying to engage with HCPs to understand more about their condition. As someone chronically ill myself, I appreciate there's a million and one barriers to doing this, but @MysticMary 's husband isn't even trying.

I would be frustrated with someone who would not even explore options (be it medications, lifestyle changes etc) and just opt out of other commitments. And this would be for any health condition, not just fibro.