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 know a few people with fibromyalgia, there is no denying that they are genuinely struggling.

I have a couple of observations.

One is that it becomes all encompassing, I think because people are seeking validation for the very genuine pain and suffering, it can become people’s identity and I have seen quite a few situations where when someone adjusts / recovers through following advice and they are shunned by the Fibro community as ‘it can’t have been actual fibromyalgia’. There’s also an element of being worse than the other person (same with some other long term conditions). Again I think this is because they’re so used to their experience being invalidated that there is a really powerful drive to feel heard.

The other is based on an article that I read, which suggested that the pain receptors are more sensitive (something like that).

@BathnetODFOD.
Unless you have any idea you have no idea and your ‘belief’ means nothing unless you have a medical background.
I was diagnosed with fibromyalgia and was devastated and relieved at the same time because finally someone believed that all of my symptoms are connected (which I had been saying for at least two decades at that
point). I had to work very hard to be able to get well enough to return to work after I became very ill due to my fibromyalgia.
One of the things I had to battle against was ignorance like yours. 😡
I’m about to retire from a job I have done for nearly forty years because I can’t keep going. I’m neither lazy nor a skiver and I deeply resent comments and judgements like yours.

You’ll find two groups of people

• those who know fuck all about fibro, think they know just because. Usually completely outdated ideas that puts it into the ‘it’s all in your head’ category.
• those who are more educated. Maybe they’ve read research papers and they know it is all but in your head.

For those who have doubts, here is a paper showing how mice receiving blood from fibro patients develop fibro symptoms.
Here

@Hellovation it’s not all in your head. You’re not making it up. And it’s a proper diagnosis.

My sister and a close friend were diagnosed with it, after extensive testing showed nothing. However years later they have both since tested positive for autoimmune diseases. I personally feel that alot of autoimmune diseases cause symptoms but can take years to actually show up in tests. I was diagnosed as having cfs/me from the age of 15 and was told my symptoms were all in my head, it wasn't until I started getting kidney problems in my 30s that I was diagnosed with lupus. Op your symptoms are real, whatever is causing them, take them seriously and be kind to yourself.

They diagnosed me with fibromyalgia. Turns out I have EDS that once tested for with a geneticist they could see. They refuse to remove my fibromyalgia diagnosis and said I could have both.

Fibromyalgia is real in the sense that people have chronic pain. I believe most of the time it’s a diagnosis in the absence of finding something else.

I must go against the grain then. I've always worked, mostly full time and don't have mental health issues. I just have widespread burning pain, don't get restful sleep and am chronically fatigued. I would like nothing more than it to go away so that I could do more. It's definitely not all in my mind. My inflammation markers are usually raised.

The only person I know with it is about 25 stone. That has to contribute to the symptoms.

Fybromyalgia is considered to be linked directly to trauma. Do you know what trauma caused it in you?

My SD has fibromyalgia. She is in constant pain and it can be really debilitating. Try taking hemp based cbd oil to help. Try to find the cause of the trauma to address it head on. It is not in your head, it is real. However unlike many other conditions, you may be able to heal it given the right support.

Watch this reel about fibro by a british GP www.facebook.com/reel/1111377550785913/?mibextid=rS40aB7S9Ucbxw6v

Good luck x

I believe it’s a diagnosis given when the NHS can’t work out what’s wrong but there are real and persistent symptoms.

Maybe the Fibro contributed to the weight gain.

Heart attacks are thought to be linked with stress. Do you what sort of stress you’re under?

Would you say that to someone who has had a heart attack?
Nope?
Then I’d advise you to keep comments like this fir yourself.

And the reason is that MANY illnesses are linked to ‘trauma’ and ACE. But the only ones where it’s touted to be ‘just trauma’ and ‘counselling will help’ are those where diagnosis is assumed to be ‘all in your head’.
Don’t be one of those people.

I have two family members with similar symptoms, one diagnosed with fibromyalgia, the other with hEDS. I think it's real but poorly understood.

I believe it’s a real condition but unfortunately it’s one that has apparently been widely claimed so people can abuse the benefits system as no clear test to confirm

Sadly not surprising to see the usual sneery digs being made about it being all in our head 🙄.

@Werthering I only know one person with fibromyalgia - me. I’ve got two adult children and I worked for over 30 years before I was diagnosed. I have MH issues because of the fibromyalgia. You try being in excruciating pain 24/7 and see how your mental health is. I wish it was in my head; I’d be able to make myself better then.

Yes, it might be a diagnosis of exclusion, but that doesn’t make it any less real. I imagine one day it will turn out to be an autoimmune disorder, given the number of fibromyalgia sufferers who have co-morbid autoimmune diagnoses.

I thought heart attacks were no longer thought to be caused by stress?

It's so frustrating to people with real conditions when it's blamed on stress (another way of saying it's all in your head) or trauma.

I’ve heard this from medical professionals too.

The only person I know never shuts up about it and has made having it his entire personality. So I'm probably a bit prejudiced by that.

Sorry, that probably doesn't help a lot.

And medical professionals, especially when the patient is a woman, can be the worst for ruling something 'all in your head' or 'stress' because they can't pinpoint something they can measure.

Fuck me it’s like fibro-bingo.

All in your head - check
Fat person - check
Fakers claiming benefits - check
Snake oil remedies - check

I believe it is very real. I feel sorry for sufferers because it seems to be a diagnosis that’s given and then there is no treatment offered. There needs to be a big research study.

I can only tell you from my own experience you are wrong but trauma can be a big trigger. It's thought to be an overreaction/ overstimulation of the nervous system. The brain actually tells the body it's in pain to try and protect it from any more trauma so the pain is very real. Psychosomatic pain is something completely different. But I can't change what you think or even know you so I don't really care and neither should the op.

I think unless you have it you don’t realise how bad it can be, the pain can be awful and there’s other things that can go along with it like ibs, my feet and toes constantly burn, I have restless legs and even if someone pokes me it hurts me, apparently what started mine was I had glandular fever as a child.

I think it's real, I know people who have it and their pain and suffering is real. I think eventually as testing improves etc there will be some kind of genetic / immune reason found for it.

I think there may be a psychosomatic element to it but only in the sense that in the people I know with it, their symptoms worsen with stress and it's more likely to give them a flare up. That doesn't mean it's "all in their head" - one of my epilepsy triggers is stress; that doesn't mean it's all in my head. It just means that there's a link between your mental state and how your symptoms present.

I said I don't believe that people's experiences aren't real. I also don't think everyone's experience of it is the same. It may be that research shows the root cause of some people's fibro symptoms is in fact a completely different cause to that of others. Your entire life experience is obviously nothing like that of the people I personally know.

Oh believe me, I know!