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 think the people who have it believe it to be a very real thing but that the diagnosis literally means they have exhausted all other options of what could be wrong.

I think the pain and suffering of fibromyalgia are real but also think it's a catch all diagnosis for when drs cannot otherwise explain the very real pain and suffering. I was diagnosed 25 years ago.

There is research that indicates it's probably an autoimmune problem. I used to think I had it because I was in constant pain all over my body, but that went when I changed the type of antidepressant I was on.

Fibro is a government and NHS recognised condition and I am grateful for that as ignorant comments like yours make it very difficult for sufferers to be taken seriously. Research is now showing it to be originating as an auto immune condition affecting the nervous system. It is also extremely exhausting, painful, and demoralising, every day as symptoms change every hour, minute, second, so life- if you can call it that- cannot be planned in any form. This is why so many lose their homes, jobs, friends, families, freedom, and selves , as they are too busy fighting pain and fear. I say this not through sound bites on social media, but because I have lived with it for a third of my life, and it is hell.

I have CFS but I don't really talk about it cos I get the usual 'you need to do more exercise', 'you're unfit', 'you've got to push through' or 'you can't be tired cos you haven't got kids.' I absolutely believe Fibro is a real thing, anyone who suffers from a chronic condition will get it but others don't understand it's not just tiredness but complete physical exhaustion.

It's absolutely real but quite misunderstood. As is apparent by this thread!

I don’t think this was meant unkindly. I know someone diagnosed with a functional neurological disorder and she explained it as ‘they don’t really know what’s wrong but have exhausted options, so they this is the diagnosis‘.

I think the pain and suffering of fibromyalgia are real but also think it's a catch all diagnosis for when drs cannot otherwise explain the very real pain and suffering. I was diagnosed 25 years ago

Personally, I agree. I had that diagnosis years ago, after several years of serious disability and pain. In my case, all my symptoms went away, very slowly, and now I am absolutely fine.

It doesn't matter what I think about fibromyalgia. It might matter what your doctors think as it affects how they will treat you in the future for other conditions.

Fibromyalgia is a diagnosis of exclusion - there's no specific test for it and no specific treatment. It's a description of patient experience, basically.

Ultimately, you have to think about it from your own perspective, not that of others. What are you seeking from a diagnosis? What would happen if you didn't get one? If a doctor tells you fibromyalgia isn't real, will that make your pain go away? If a doctor tells you it is real, but you don't have it, what then?

Sometimes people get caught in very damaging mindsets around diagnosis. What is important about diagnosis is the PLAN it can give you, to help you manage and improve your life. If there's no plan, then the diagnosis is immaterial and there's no point getting one.

Don't ask about the diagnosis, ask about a treatment plan.

@SpikyCeliaagree 100%.

Essentially this. It's a diagnosis doctors often give when they can't find a cause for the symptoms. That doesn't mean the symptoms aren't real, they very much are but scans/tests haven't found an underlying cause.

A family member has been diagnosed with fibromyalgia, and I am sympathetic to this. But it seems like it’s been diagnosed as they can’t find another cause. So is it fibromyalgia???

I may or may not have it according to the rheumatologist I consulted. I have autoimmune conditions already and I might have fibromyalgia on top but nobody's ever going to be able to say for certain. In some ways, it doesn't really matter as there's not really any treatment for it beyond what I take for other health conditions. I find it profoundly unsatisfying but I'm trying to move away from the need for a specific diagnosis and just work on managing the symptoms.

I have a friend diagnosed with it plus POTS, EDH and hypermobility who does has bad days (I’ve witnessed them) but generally manages to run around after a toddler and live a full life but has never worked since being a student. She couldn’t get a diagnosis on the NHS so ended up going private and her parents bought her house.

Lots of people are quite negative about it. I think the problem is not enough is understood about it and it's a bit of a catch all diagnosis? It appears as of l might have it, after being seen by rheumatology and them then referring ne onto the chronicle fatigue / fibromyalgia service. I think autoimmune issues are at the root of it for me anyway

*EDS

It is a real condition, it causes a lot of pain. For some reason it’s a target condition alongside things like CFS, EDS etc. some people like to cast doubt because they don’t understand it and begrudge people help and support.

It’s good your doctors are taking it seriously and there are a lot of support groups. I hope you get some answers soon and the help you need and deserve

People do find out they have something else later down the line, as they get more symptoms. It's entirely possible. But many don't. I think I've had every blood test and scan known to man, multiple times. It's a fight to stay reasonably functional with it. I'm sorry you have it.

I have fibromyalgia and to be honest because of the other comments have found it very hard to accept. My rheumatologist diagnosed based on the fact I have severe PTSD from an event in my life and this has triggered it.

I also have multiple other autoimmune conditions and these seemed to be enhanced due to the fibromyalgia.

My honest opinion is that it’s a diagnosis given to people whose poor mental health manifests itself in physical symptoms. I think it’s a predominantly psychosomatic condition. I wouldn’t ordinarily say this directly to someone but you seem to want honesty

Interested to hear why you think this? What has informed your opinion?

Very real, but not as of yet medically understood condition. My sympathies, OP 💐

It’s what you’re told you have when your symptoms cannot be explained by diagnostic tests, and it doesn’t have a great reputation as a legit condition.
Honest opinion as requested.

I know 5 people who have this, all fit this description:
Female
30+ when fibro started
Very long-term MH issues (mostly depression)

All but 1 of them have never really worked. Only 1 of them has children and her partner does most of the care. When their MH improved (in their 30s), their physical health got worse and as a result they have remained off work. They all spend a lot of time resting.

I do believe that the symptoms they have are real. I also think it's possible they are at least somewhat psychosomatic, and that this does not make them not real or actually experienced. I sometimes wonder if the distraction of work, children etc would help them focus on something else.

Disclaimer: these are only the people I know. I can only say what I've seen and I do understand people suffer terribly with this. I also think it's possible it has a MH link at least in some people.

ETA it's also possible, as it's a diagnosis of exclusion, that is actually many different conditions under the same name. So the fibro some people experience is not the fibro others do and in time they won't be given the same diagnosis.

I was diagnosed with Fibromyalgia about 6 years ago. It's a very frustrating diagnosis as they still don't really know what it is. I have varying degrees of symptoms. Wide spread pain like I'm bruised all over. Random stabbing pain. Tightening pain around the ribs like something has been tied tight under breasts. Burning skin, numbness, tingling, pins and needles, feeling like skin is crawling or water is dripping/running down body. But by far the most restrictive is the Chronic fatigue and poor balance. It feels like I'm constantly wearing a heavy suit of armour. As the day wears on I just sort of lose the ability to hold myself up, like a puppet who's had it's strings cut. My arms won't work and I can't even hold my phone up to my ear. I tried to keep working but had to give up my job as a carer 4 years ago and now I'm on disability.

I know there's a lot of ignorance and people don't believe it's real but I can't change that.

If you do get a diagnosis though, do yourself a massive favour and don't go on so called support groups. They have a tendency to encourage each other to stay unwell, it sort of becomes their identity, any talk about eating healthy or exercise is shot down and anyone saying they went into remission due to eating healthy or anything really are told they didn't have it in the first place. So it can be lonely but I'm not giving up.

Do your research, I've had some success eating plant based and completely raw.

Good luck