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 do think it’s a diagnoses given when they can’t work out exactly what is wrong with you, I’ve been awful symptoms for 4 years and test after test. I won’t accept them telling me it’s ‘fibro’ I want them to actually figure out what it is! God there might be a cure for this misery!

I agree. I know several people, with it. And they all have underlying psychological issues. I also find that they let it define their personality as well, and post a lot about it on social media. I have noticed that people with the same condition that I have, refuse to let it define them in any way.

This is generally my experience too. I come across people with all sorts of medical issues in my work the majority of fibro sufferers definitely fit a "type".

It's something of a controversial diagnosis and people seem to have strong opinions about it often based on not very much knowledge.

Research suggests that people generally find it a helpful diagnosis to receive, it draws a line under the investigations, and provides an explanation as well as reassuring people that their symptoms aren't being caused by something worrying. On the other hand some health care professionals tend not to value it as a diagnosis and it can carry a stigma in medical settings and also sometimes mean that any further medical issues are put down to fibromyalgia.

Pain is your body's way of telling you there is danger and our current understanding is that FMS is a disorder of the nervous system where everything, including pain, is amplified and things that aren't a danger to us start to cause pain too.

Some recent animal studies have suggested that this increased sensitivity in the nervous system might be switched on by our immune system and in the distant future this may provide some sort of avenue for treatment.

Our understanding of FMS isn't great and we don't have any really effective treatment options. Medications in particular don't tend to be helpful. It's best managed through pacing, the right amount of physical activity, addressing stresses in your life and otherwise looking after your mind and body by addressing sleep, mood, nutrition etc.

Versus arthritis do a good explanation on their website as well as a nice critique of the research surrounding treatments. Looking at the NICE guidelines for chronic primary pain will give you a good idea of what you should expect in terms of assessment and treatment.

Can I ask what medication is prescribed for fybromyalgic pain? I'm just being nosey really as I'm on gabapentin for peripheral neuropathy. A post above - burning feet and toes is a symptom of PN so I didn't want you just put everything under one umbrella.

A limiting physical/pain condition does tend to cause psychological issues though, so it's not surprising those people have mental health struggles alongside.

I don’t know much about it but I think a lot of people view it as a modern version of ME.

I’m pretty convinced that one of my friends has Ehlers Danlos. As her symptoms don’t fit with Fibromyalgia, but because her GP has diagnosed her with Fibromyalgia the nhs rejected the rheumatologist referral.

I agree with this. It seems to be a diagnosis of exclusion, such that they can't find anything else wrong so give this diagnosis.
Im sorry to tell you that when people tell me they have this I'm outwardly sympathetic but inwardly I assume perhaps poor mental health is a significant factor.

I’m diagnosed with both ME and Fibro, after nothing came up on what seems like hundreds of tests. I don’t really care what randoms think, though it is bloody frustrating that both of these conditions, in particular, Fibro seem to be the target of ableist benefit bashers.

Its not. They are different things

Can I ask what condition you have?

It's definitely a real condition causing chronic, severe pain, although sufferers can have 'good days' and 'bad days' and physical over-exertion can cause flare ups. I am certain it is an auto-immune condition.

My dear loved one had it and suffered decades of patronising doctors fobbing her off. She was convinced it was brought on by deep grief over the loss of her mother during her childhood, followed by years in an unhappy marriage.

It doesn't matter what we think.

Will having a name for what you are experiencing help YOU? It sounds like it will. Sometimes it's more important to have something so that you know it's not in your head and so that you can say I have x, not I have y wrong with me. Having a diagnosis with a name can be enough for some people. It can also give you access to support and services you might not have otherwise.

However as you asked, I think its like IBS. The symptoms are real and the impact is real but the diagnosis is dismissive because they don't know what else to do. I think it can also cause any and all future health issues to be blamed on it so it can be difficult to get listened to about new issues.

I hope you find it helpful and find ways to manage your symptoms.

I echo this - it’s often mental health related.

I have a family member who says she has fibromyalgia, or ME.

You should probably educate yourself more on the condition then. Whilst people with fibro can end up with poor mental health because being in pain 24/7 is horrendous, its a very real illness

Or people whose trauma history has resulted in a malfunctioning autonomic system?

I think your description is presumptive of their being no underlying cause. I would say the underlying cause is trauma of some kind that causes a malfunction.

I also know two siblings with similar symptoms, one diagnosed with fibromyalgia, the other diagnosed with hEDS. Different doctors and a few years in between diagnosis.

I assume by your phrasing you don't believe her? Do you also not believe fibro and ME are real illnesses?

I never said it's not a real illness. Mental health issues can cause very real symptoms.

I 100% believe peoples' symptoms are real and hope they get all the support they need to manage them.

I do wonder what the fuck is wrong on a societal level, that so many people are becoming unwell with autoimmune/inflammatory conditions that were quite rare 50 years ago and probably unheard of 50 years before that. Is it the appalling quality of the food supply? Toxins/pesticides/microplastics? Sedentary lives made worse by covid, gaming, screens? I hope that there's some research being done on the root causes - without people feeling personally victimised by any theories that come out of it - so that there can be better treatment or even prevention.

ETA: I also wonder if it's predominantly experienced in Western societies.

Yes I know, I just think people put them in the same category and respond to people with those conditions in a similar way.

It feels like it was more common to meet people with ME thirty years ago and now it’s more common to meet people with fibromyalgia.

I have this, my symptoms are pain in the connective tissues, between my skin and bones basically. Hard to describe. It’s triggered in me by stress, uncomfortable more than acute pain.

I feel sorry for some of the family members of the judgey people on this thread.

I thought I probably had fibro for many years. Not formally diagnosed and I didn't seek one, just found my own way. Dismissed as anxiety, stress, IBS, take this PPI, 'we don't know', 'tests are all normal -shrug'. Finally got diagnosed with a real condition that everyone can measure and accept as real. Probably had it most of my life. Dealt with that and symptoms massively improved. Definitely not all in my head as many here would have judged me with.

I'm outwardly sympathetic but inwardly I assume perhaps poor mental health is a significant factor.

Does that mean you don’t have any sympathy for those with poor mental health?