Fibromyalgia - be honest.

[Hellovation]

I think I’m going to be diagnosed with fibromyalgia.

I had never heard of it, until the neurologist and GP both mentioned it.

Having now mentioned this to a few people and their reaction leaving me confused, some internet searches lead me to believe it is widely believed to be a non diagnosis and simply something in one’s head or a ‘lazy diagnosis’ because doctors are at a loss.

I was heartened to think I might have a diagnosis and understanding and way forward to get better and live my life but now I feel so sad.

Be absolutely honest- what do you think of fibromyalgia?

I'll answer this if that's ok

A middle aged woman with concomitant mental health diagnoses without further education. (You can look it up) It doesn't mean everyone will fit this.

It’s a psychosomatic, functional disorder. Because it’s triggered by the mind/stress events it doesn’t mean the symptoms aren’t real.

Heart disease is not linked to stress.

This is absolutely right.

Doctors think they know all there is to be known but so many people change their diet, remove plant materials that contain oxalates for example, go through months of dumping and mast cell activation but stay with it and come out the other side being able to remove loads of medications and get quality of life back and with reduced pain.

The doc doesn't understand why (or do but are only allowed to talk about the things they trained on) but that doesn't mean the patient is not on the path to full health again.

It's only recently being accepted that type ll diabetes is reversible in some cases.

If I had listened to my GP, I would be in a wheelchair and if I had accepted my DH's diagnosis and not fought for second opinions, he would be dead since 2014.

Anyone diagnosed with fibro, I would say change your diet, cut out plants with oxalates and fast and filter your water as the very first step.

It is most likely an autoimmune condition or cluster of conditions suffered mostly by women (see interstitial cystitis) so enough research hasn't been done and it's easier to dismiss it as not real.

I was diagnosed with fibromyalgia/ME after a viral illness and traumatic event combined, and it was hell - not just the illness but the fact that no one believed me. I remember a family member marching me outside for a walk and my lips and fingers turning blue before we had reached the end of the street. I was referred for CBT that was useless and left me exhausted and in pain, but I had to go otherwise I would be dismissed from the system. But I'll always remember the helpless feeling of being ill and incapacitated, and instead of sympathy or feeling strong to get through it, being treated as though I were weak and pathetic and an attention-seeker, or just someone who 'believed' I had symptoms for no reason.

Your situation sounds horrendous and of course if blood tests reveal inflammation, then there is very obviously something physical going on. It must be incredibly frustrating that the doctors can’t tell you what’s wrong. But in medicine, like so many other disciplines, there is still so much we don’t know.

The OP asked for honesty and it’s clear that fibromyalgia covers a huge range of things. No doubt, some people’s symptoms have a physical cause while others are linked to mental health - after all the mind and our bodies are incredibly connected. You only have to think about how anxiety can cause stomach butterflies or being at the doctor can cause ‘’white coat’ high blood pressure, or stress can cause migraine, to know this is true. That’s not to say the symptoms or pain aren’t real, they most definitely are!

Like so many things it’s a spectrum. And no doubt, there will be better understanding of what are probably myriad causes - from physical to mental - as research continues.

So sorry for your situation, it sounds incredibly difficult. And for anyone suffering from chronic pain or fatigue.

This is not what the latest research has shown.
https://www.kcl.ac.uk/news/new-study-shows-fibromyalgia-likely-the-result-of-autoimmune-problems

I had to retire early about 18 months ago because I was clinging on by my fingertips to function with fibromyalgia.

I was self employed so did not get any kind of enhanced pension. I am surviving on 2 small bits of pension and my rapidly diminishing savings until my state pension kicks in in 61/2 years. I don't get any benefits of any kind.

Have you seen the research coming out of Kings College showing that they think it is probably an autoimmune condition?
I think research is going to overrun our thinking on this in the next decade or two.

This is not what the most recent diagnosis is indicating.

EDS and Fibromyalgia often overlap but are completely different things. I suspect if people didn't judge it to be all in the head you wouldn't be so worried about a diagnosis which I understand. both very often overlap with neurodivergence which also overstimulates the nervous system.

The problem is, it’s a diagnosis of exclusion. It’s a diagnosis because other things that can be ‘proved’ are not excluded. It’s not something that can be proved in its own right, which makes it tricky.

They cannot see it on a scan or blood test but they know the illness is there and real. Therefore the only way to diagnose is to test for everything they can test for.

This article is really interesting. Especially this bit:

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.

Furthermore, the mice injected with fibromyalgia antibodies recovered after a few weeks, when antibodies had been cleared from their system. This finding strongly suggests that therapies which reduce antibody levels in patients are likely to be effective treatments.

How can people think POTS is made up? In sit/stand tests, my DC's heart rates jump from 60 to 140 and keep climbing. They both pass out when they vomit, sometimes when they stand, often when they shower. They both have EDS which apparently also people don't believe in. DD has had three surgeries before the age of 15. Her jaw subluxates when she eats and she coughed yesterday and did the same to her ribs. Her hip will subluxate if she walks and twists at the same time. DS has pectus excavatum and is under review because of the pressure on his lungs. All because of the eds.

Is it possible to dislocate your major joints through willpower? Have a missing sternum? Stretchy, easily-damaged skin? The thousand other observable problems they deal with daily? Fuck me, the symptoms are bad enough, do they have to be disbelieved as well?

Neither are work shy. No benefits. Ones at college and just passed her driving test, taking a levels this year and other is at school with a perfect attendance. Two parents - one with eds - who both work full time professional jobs.

I'm staggered people think they could be lazy benefit-scroungers.

Can I ask why you haven't applied for pip ?

Have you thought of getting a spect scan? It may help…….

I don't know if it's real or psychological as I'm not a medical expert or know much about it. But, like with other 'non proveable' and hidden conditions some people who are inclined to these things can get a diagnosis of this in order to avoid work or for attention. I know someone who has a whole host of these types of conditions which prevent her working, yet don't prevent her doing anything in her social life. This abuse makes people sceptic about the condition.

I think it’s a catch all for someone who can’t get a diagnosis in anything else. I think it’s probably related to burnout on some level or depression. I think the same way about borderline personality disorder (at one point I was diagnosed with this). I think it was a last resort and it was actually just that I was emotionally unstable because I was so unhappy and because my childhood involved lots of gaslighting.

This is my view too.

I totally believe that people diagnosed with fibromyalgia experience genuine pain and other distressing symptoms.

I hope there is some treatment that will help you OP.

It's a very real thing and don't let any cruel or unthinking person tell you otherwise.

I know quite a few peri menopausal woman have been diagnosed. I had all the symptoms too, pain, elevated inflammatory levels.
starting hrt was the cure for me.

This. So many people able to claim these symptoms and scam benefits, it’s difficult to disprove - the new “bad back” if you will

it does a huge injustice to those who actually do have it and are really suffering.

There should be no shame in receiving pip for a disability even when working, it can really help with mobility/travel and getting in a little bit of help with housework for example. Of course some people don't want the label and stigma and it's up to the individual to apply but it doesn't make one a benefit scrounger.

I just wanted to make it clear that I don’t think the suffers of this condition are making up their symptoms. I think sufferers are genuinely in pain and/or fatigued and so on. I just think there’s a very strong psychological element to the condition in a similar way to FND

This post very much resonates with me.

At 33 years old I developed a lot of pain/swelling in joints and general pain 3 months after having a baby and after having a viral infection. Fibromyalgia wasn't mentioned back then, but I was sero-negative for rheumatoid arthritis, and so was told just to keep on taking ibuprofen and paracetemol

Fast forward to age 41 - still having ongoing pain (that would come and go, but tried all sorts of health shop remedies) and a sample from knee fluid tested positive for rheumatoid arthritis. I've since been on methotrexate and am able to walk 10,000 to 17,000 steps a day at age 60. I do get pain sometimes - but VERY rarely. It's made a massive difference, being on this drug.

I worry that sero-negative rheumatoid arthritis goes undiagnosed and people are told they have fibromyalgia and then suffer a lot.

And bollocks and bollocks again to people saying 'it's psychosomatic' - like fuck it is!!!

NB 40 per cent of rheumatoid arthritis patients are sero-negative