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 had ME or fibromyalgia or chronic fatigue, whatever you'd like to call it.

I think fibromyalgia is what the doctors say when modern medicine hasn't worked. But clearly there's something going on with our bodies, some sort of inflammation or underlying infection. Best thing to do then is to support our immune systems and take care of our bodies.

I completely changed my life. Prioritised sleep. Ate real, nutrient-dense food. Zero sugar or flour. Took lots of vitamin d.

It took a long time, but I'm ok now. Still occasionally get symptoms but if I double down on taking care of my body then I feel better in a week or so.

Same - I have an autoimmune diagnosis but fibromyalgia was mentioned along the way. I definitely had a sense that I didn’t want them to land on fibromyalgia, because it wouldn’t give any answers.

Sorry if I'm not coming across well, it's been a long night, im in a lot of pain and it is frustrating seeing some of the comments especially after the news of the last few days.
I am being defensive because it's difficult dealing with it all and then seeing people commenting in certain ways.
I'm off to try and sleep.

Could you explain what "type" this is?

Those who think fibro is all in the head, or caused by poor mental health, how would that cause the sky high levels of inflammation in my body that show in every blood test I have?

I was fit, healthy, very active and outdoorsy, worked full time in a demanding professional role, no MH issues, happy, married, children, loving life. Then at 27 my body just broke and I've worsened ever since. I've been up all night in agony, haven't slept for four days, I quite literally want to die so that I'm put out of this misery. But yeah, must have been because of gaming or screens, or my mind 🙄

I know 2 people with it and my rheumatologist wants to diagnose me with it but at the moment I’m refusing to let them put it on my records. Oddly both me and the two other people are also diagnosed with Ehler Danlos syndrome…..which causes widespread pain. So my point to the dr is surely my pain is just caused by the EDS. 🤷‍♀️. One of the other 2 people I know is trying to get her fibro diagnosis removed as she thinks the same. The other person got her EDS and fibro diagnosis on the same day by the same dr which I always thought was beyond odd. I am not sure if it’s a lazy diagnosis where they just can’t be arsed to investigate further or what.

I do believe that people with fibromyalgia are for the majority in genuine pain. I went from running marathons to barely being able to walk in a short space of time. It upsets me that people say that people with fibromyalgia “are a certain type”. There’s an insinuation that we are fakers, like the attention, wanting benefits, lazy, etc. I can promise you nothing can be further from the truth. I go to the gym 5x a week and push myself like mad to try and keep me doing as much as possible…..but I still have to walk down stairs sideways because my ankles are in so much pain i can’t flex them!

I work in cmht and it’s very much associated with personality disorders. If someone comes in with fibromyalgia it’s just assumed they are emotionally dysregulated or depressed. Not saying that’s fair but you want honesty.

@octopusenergyfree50I have MS. It does not define me at all.

I think its a badly-named catchall for something medicine doesn't understand. I think most of the time, when people are diagnosed with it, there is something wrong with them, but I'm not sure doctors know what it is. Fibromyalgia means muscle pain, doesn't it? Okay but what is causing the pain? Is it neurological? Is it structural? Is it inflammation? These are the questions I was asking when docs started talking about diagnosing me with it and they eventually did find a cause that can be managed with physiotherapy and diet and they stopped using the word. I definitely think its something people get lumped with when they actually need proper investigations (which can take years)

@ElbowsUpRising similar. My pain is also caused by an irregularity with joints and cartiledge. That's the reason. Doctors were way too quick to say, 'eh idk call it fibromyalgia' until once a GP with an interest noticed that my knees go backwards in a standing position and took an interest.

Fybromyalgia is a condition that disproportionately affects women, ie. 80-90% of its sufferers are women, and like all conditions that disproportionately affect women there is very little research about it. Personally, I don't think its a coincidence that most women are diagnosed in middle age and I'd be interested to see studies of the effect of the use of HRT on the condition, especially early in diagnosis.

One thing I’ve learned about managing fibro, it’s important to emotionally detach yourself from things that don’t matter. Preferably from everything, but I’d like to stay human!

All that emotional engagement, all that excitement, stress, involvement- it eats up energy and gives out pain!

I used to be a passionate person, enthusiastic and energetic.

Now I save that for small key things that matter! My family and dog! Randoms on the internet don’t get me wound up, they aren’t worth the consequences!

I have a diagnosis of fibromyalgia and then later I got an arthritis diagnosis. To start with they wanted to diagnose juvenile arthritis and couldn’t find the right markers in my blood so after years of tests they said fibromyalgia. Later I moved and new hospital diagnosed me with arthritis as well that I take injections for. However that’s not to say the fibromyalgia is gone as I can tell which symptoms feel like arthritis and which like fibromyalgia. The pain is different (different places, different type of pain) the fatigue is much worse and I become ultra sensitive to noise and smells which I don’t have when it’s my arthritis pain.

Anyone I’ve ever met with fibro has had trauma in their life from childhood or adulthood - onset just after something stressful. I believe it is a neurological response to trauma held and stored in the nervous system for many years and is a very real and disabling condition.

I do feel that work on mental, physical, emotional and spiritual health can assist on easing systems can possibly reduce and eventually cure (I’ve seen it) but it takes time, patience and understanding.

i completely empathise with all those suffering here who have a diagnosis or have been on this journey seeking one.

Absolutely this
Women are much more likely to develop AI issues but also take years longer to get a diagnosis.
I was diagnosed with AID -9 years of symptoms , dismissed and told it was ìn my head, peri menopause, it's your age blah blah
The day I found out that I had 2 blood markers plus my symptoms were classic I nearly fell off the chair in shock
I think they will find the markers for AI Fibromyalgia one day

Sending best wishes to everyone struggling -I believe you

Every person i know with fibro has suffered quite extreme trauma. I'd say about 20 women I know all with fibro diagnosis have had really awful experiences.
I believe that the body uses pain to process unresolved trauma and I wonder if that's what is causing physical pain.
Just my own thoughts, absolutely no science behind that and I haven't researched it, but it's what I think could definitely add to physical pain that otherwise has no explanation to be there.
I do believe fibro sufferers are genuinely in pain, it must be an awful condition to live with and I hope it gets more widely understood soon. I've never met a man with fibro, I'm curious to know if the pain men who do have it get is similar to a woman's.

I have to say i agree with this too.

Does this mean sufferers should be sneered at or not treated though?
Heart disease is directly linked to stress but we don't ignore that .

I’m a doctor. This diagnosis is what we call functional. It means no medical cause can be found for your symptoms. It isn’t a “lazy” diagnosis. They will have undertaken extensive testing which has ruled out any medical cause for your symptoms. It doesn’t mean your symptoms aren’t real but that the cause is likely to be psychological since there’s no medical reason for you to have those symptoms.

I thought I might have fibromyalgia and then I was diagnosed with coeliac disease so I assumed that was sorted. Then it became apparent the pain wasn’t going away although the fatigue got better, and after a long time of pushing for anyone to take it seriously I found out I have hypermobile spectrum disorder.

If it had turned out to have been a diagnosis of fibro I would have been fine with it as I just wanted some kind of formal acknowledgement that there was actually something wrong, and whilst fibro is obviously a diagnosis given when they have no other explanation, it’s still better than “not sure, sorry!” which was what I had before.

Fibromyalgia is a real condition because the symptoms you are experiencing are real. Chronic pain is really awful and I’m sorry.

Interesting how many of us have been or almost been diagnosed with this before further testing revealed a functional cause that fully explained pain and fatigue.

I suspect it is caused by primary oxalosis.

The problem with emphasising the link with emotional issues and poor mental health, is that you are essentially saying people should ’pull themselves together’ or be better at dealing with stress and trauma.

Truth is, if your body takes offence to prolonged stress or trauma, it’s not in your head. It’s like autoimmune illnesses- you wouldn’t tell someone with an autoimmune condition that it’s all in their head or due to emotional issues.

My muscles are full of adhesions as though I have injuries everywhere. My body is overreacting to stressors that really shouldn’t be a problem.

And as for their being a ‘type’- one type is people who endured extreme stress for a long time- over achievers, people who work really hard and don’t rest enough, and…… people who look after others instead of themselves.

A personality type that’s susceptible would be one raised by perfectionist parents, who is a people pleaser with high standards who sets themself on fire to keep other people warm.

But that annoys the hell out of me. Surely what you mean is there is no physical cause for the pain which can be found. That doesn’t mean it’s psychological.

I remember at work a consultant who was ranting about a frequent flyer we had, he saw her again coming into the ward and was ranting he’d told her there was nothing wrong, etc. he thought the pain was in her head. Well an sho ran more tests that time and by that afternoon she had a cancer diagnosis and died a few weeks later.

I remember reading a medical article at the time saying doctors should not attribute pain to mental health /psychological just because they can’t find a physical reason.

My Mum had fibro and the pain was very real. That said she was an exceptionally motivated woman and was able to lead a very full on busy life working and raising a family.

Far be it from a doctor to admit that no known medical cause is not the same thing as no medical cause.