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!

Presumably those skeptical of the condition who’s eye rolling at the DH and existence of the condition, would also have eye rolled at you during those ten years?

I would have been there in that doctor's appointment (if indeed it happened) and said to the GP, "Is there any reason it only happens on a Saturday or Sunday?" and "Is there any reason why it affects someone more when they're washing the dishes?"

And he would have rightfully suggested marriage counselling

What are those studies that have shown actual physical evidence and what evidence has been found? I am afraid I have to echo others here, the person that I know has it is ok to go to the gym at 5.30am every morning but is unable to attend the office to work.

I think the latest research says fibro might be of autoimmune condition if the nerves?

In my case it would apply I have 4 autoimmune illnesses not including if fibro is,but it often flares up at the same time if other illness medications need tweaking am under stress etc

Those who are saying Psychosomatic - that doesn’t mean imaginary though. It means your body reacting physically to stress and other non physical factors.

So it doesn’t make it less real or made up.

I’m not saying that fibro is psychosomatic but people (my mother being an example) bandy this word around without understanding.

I still very much doubt your husbands self-diagnosis though, from what you’ve said, or the veracity of his “report” back to you from the dr.

Sure.

https://www.qmul.ac.uk/whri/news-and-events/2023/items/an-immunological-basis-of-chronic-widespread-pain-in-fibromyalgia.html

https://www.nhs.uk/conditions/fibromyalgia/causes/

It's not a mental health condition.

There are observable differences.

Those who believe it's an imaginary condition, I'd love to see the day you're struck down with it and let's see your antidepressants fix it then 🤯

The only actual study that you cite was based on mice? This is from the study: We used a back-translational approach in mice to demonstrate the pronociceptive role of neutrophils in fibromyalgia.

I am afraid that there is no tangible evidence in humans that supports the existence of physical evidence in relation to this condition. It is only diagnosed by excluding other tangible illnesses.

When you say based on mice, you mean this?

"The researchers injected mice with antibodies from people living with FMS and observed that the mice rapidly developed an increased sensitivity to pressure and cold, as well as displaying reduced movement grip strength. In contrast, mice that were injected with antibodies from healthy people were unaffected, demonstrating that patient antibodies cause, or at least are a major contributor to the disease."

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

Many conditions were thought to be all in the mind until the actual physical cause was found.

I maintain that the medical profession's history of dismissing women's issues and putting them down to emotions or hysteria or dramatics or whatever is a big part of why fibromyalgia is sneered at.

If it mainly affected men you can bet your arse it would be taken more seriously.

I agree with a pp, write a list of jobs that he needs to do each week, tell him it doesn't matter when they get done, so he can fit them in and around his illness. If he refuses as he doesn't know when he will feel ill, suggest he cancels his 'fun' plans just in case

Tbh I read your previous thread and how you've not buried him under the patio yet is beyond me.

@Twiglets1 the pain is real regardless of the cause. It’s so much more complicated than ‘it’s psychological’. There are adhesions in my muscles that cause pain, masseurs can feel them, it’s like old injured tissue they tell me. That’s not just in my head.

All pain is in the mind- that’s where nerve signals are processed.
Stress hormones aren’t all in the mind, they are very physical in their impact but the stimuli are all in the mind. They impact pain too.
Sometimes we carry the memory of an old injury and feel pain after the injury is healed.

If it was all in the mind I could work hard at counselling and recover.
Reducing stress has helped, but stress includes having fun, excitement. So no concerts or festivals for me. No holidays because organising them and travelling is so stressful it undoes the lovely relaxing bit!

Speaking to my mother sets off stress hormones and wakes up sleeping nerve endings. It’s subconscious, outside my control.

It’s like having a hair trigger on sensitivity- you hear a whistle, I hear a scream. You feel a nudge, I feel punched.

It’s hyper vigilance, and it’s exhausting.

And yes, sometimes I distinguish between a ‘real pain’ and a fibro pain- not because they feel different but Because I need to treat them differently!

The study was on mice, are you saying that this can be extrapolated towards humans? Last time I looked mice were not humans and I am not aware how reliable mice models are in relation to human conditions? I do not think that this would pass as evidence for NICE guidelines for instance?

Is everyone on this thread who has observed the selective manifestation of symptoms in those with fibromyalgia lying? Every single one?

When you state this: Many conditions were thought to be all in the mind until the actual physical cause was found.

What many conditions are you referring to?

@SiousieSoo just because some people lie about fibro and how it impacts them doesn’t mean fibro isn’t real and doesn’t impact the genuine people.

I have claimed to be less well than I am, on occasion, when the person I’m speaking to (always my mother as it happens) refuses to accept my boundaries. That doesn’t mean I don’t have it. Or that I use it to avoid all unpleasant jobs. I work my arse off for her regularly. And occasionally I‘can’t come to the phone’ because I’m ‘too ill today’.

MS was thought to be all in the mind in the 60s.

You can read some quite vicious character assassinations of patients by doctors where the doctors accuse them of making it all up for attention etc.

I said “partly psychological “ but you chose to ignore the nuance.

Saying it’s partly psychological does not mean I think you choose to have it, stress is outside of our control.

Yes maybe that is it. I am sure that there are genuine cases but I think that there is also a fair amount of malingerers who have used this condition to their own ends.

You’re thinking of ME not MS

Do you know this is the first time I’ve read such a sneery, dismissive set of comments. I’ve been really lucky in real life- everyone to whom it’s relevant has accepted the reality and impact of it.

They saw me go from a high energy, non stop, driven outward looking person to someone who has to hoard energy and think twice before doing perfectly ordinary things.

I’m not convinced about the OP’s partner’s diagnosis, but that means nothing about the reality of other people’s illness.

Hysteria was once the medical go-to when it came to illness in women. Says it all really.

Mental health conditions were demons possessing you at one point.

Look, clearly you have your opinion and it doesn't seem likely that you want to believe people when they say fibromyalgia is real so is there really any point me googling the history of medicine going back hundreds of years and linking to articles describing medieval beliefs and increased understanding and ability to diagnose ailments over the centuries and what doctors used to think caused diseases and conditions compared to what they now think causes them? How we can now see genetic causes for things that we used to have no clue about?

I'll spend hours doing that and you'll tell me it's not good enough proof for you and you'll want something else googling. I just don't have the energy to do that.

The pain I feel is real. I have read articles over the years that make me believe there is a physical cause or trigger rather than it being imaginary or a mental health problem. I never bookmarked them to keep as a handy reference. I've watched programmes about the history of medicine and remember things from them but I never took notes.

I was fine until I got glandular fever and I've never been the same since. I don't believe that's just in my head.

To you this is a mildly interesting conversation. Maybe even a point scoring 'gotcha' haha you can't provide links to studies I find acceptable so what you believe is rubbish. To me it's trying to prove myself to yet another person who thinks that what I'm going through isn't real and I'm tired of trying. It's exhausting and it's upsetting.

I believe that there is an as yet not understood / discovered beyond a shadow of a doubt cause of fibromyalgia just as most conditions were not understood / discovered beyond a shadow of a doubt - until they were.

Was it the Victorians who thought cancer was caused by an imbalance of the humors? I vaguely recall watching something about that. Black bile yellow bile. Something like that. Not real.

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.
You are only stuck in this dynamic if you decide to stay with him. The question is do you want to? Before I'm jumped on, I am speaking as someone who has multiple health issues who is in the process of divorcing her lazy and selfish DH.

Yeah I was going to say - did you sit in on the appointment, @MysticMary ? Or is this what he said the GP told him?

Did you go to the appointment with your awful husband?

If not, then I would take his report of what the GP said with a nice big ladle full of salt.

You should go and have a chat with a solicitor too.

Agree with you. He needs to be seen by a a rheumatologist or neurologist. He could have something more serious that is being left to worsen. Nhs has goe to the pits. This gp sound awful