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?

Wrong - it does not automatically entitle you to PIP. To get PIP you have to have evidence to show that your ability to carry out daily activities of living like having a shower, getting dressed or preparing a meal are sufficiently impaired and/or you can hardly walk.

That. Exactly.

There are no conditions that give automatic entitlement to PIP.

Claimants have to show what they cannot do and score enough points to qualify.

You don't even need a diagnosis at all.

I can’t get a blue badge with Fibro, let alone PiP!

I applied because there are times it would let me manage things that I currently can’t. I wouldn’t need to use it all the time, but on occasion it would make the difference between whether I can manage something or not.

On occasion I can’t find a parking space where I get out of the car safely as I stagger about initially and need the door really wide. If I’ve done a long walk- great, on a good day I can- I then can’t get my right leg back in the car. It’s like a lump of lead. I sit there like a plonker, while DH holds the door so it doesn’t bang the car next door, and tries to lift my leg in. Stupid thing.

But that doesn’t get me a blue badge. So it certainly won’t get me PiP 🤣

Absolute bull.

Yes. I have ME-CFS and fibromyalgia. Both diagnosed and I didn't even think I had fibro! After a battery of tests, I learned I was showing symptoms of multiple sclerosis but the consultant determined fibromyalgia.

For me, this sums things up: similar to MS but (fortunately) without demyelination. Because the causes are unknown and there are no definitive tests, some people think they aren't 'real'. There are still many poorly understood diseases, though: science is still learning.

It's not that different to the way people think autism isn't real: again there's, no known cause and no specific test.

I was exactly the opposite. Worked 70 plus hours a week, while doing a Masters, travelled around the world, often alone. Never ill. didn’t even know what mental health meant really, never thought about it. Moved abroad, moved countries then bam fibromyalgia hit like a sledgehammer. I paid for blood tests, treatments, supplements. Helped a little but not a cure. I can cope with the pain , just about, but the fatigue really pisses me off. I’ve forced myself to walk a mile around the field behind my house this morning, just about made it home.

But I can see that fibro is an easy condition to fake if someone really wants to fake a condition. Nothing can be proven, nothing shows on scans, XRays or blood tests it’s all history and being prodded by a rheumatologist that took all of 10 minutes. I have every sympathy for anyone who has it, it’s shit and changes your life totally. I never mention I have it unless I absolutely have to.

It affects everyone differently, I think it’s possible there are multiple causes. I pay for blood tests and B12 injections, take many supplements so I know it’s not vitamin deficiency.

Know exactly what you mean. I swear a LOT at fibromyalgia.
Tens machine ( Lloyds Pharmacy one you can buy online is good) Hemp cream — lots of different ones, Kind is a good brand. Choice on Amazon.
Heated throw, electric blanket on your bed, never get too cold or too hot I find both extremes trigger the pain. Stay hydrated.
Soluble paracetamol sometimes works better than regular tablets. Try one with caffeine.
Cutting out sugar helped me a tiny bit.
And rant at it!

This is absolute rubbish. Please don't spread this type of disinformation online

I actually have a friend who reviews PIP appeals. I've chatted to her about claiming benefits because of my fibromyalgia. She said that I wouldn't get PIP.

Yes, I've been tested for MS. I was also convinced I had it.

Why are you quoting me?

I agree with this.

2 able bodied family members who have gladly never worked a day in their life were diagnosed with this when the doctors 'couldn't figure out what was wrong.'

im not saying it's a made up case, but because it's a process of elimination diagnosis, people can and do use it to take the piss which tarnishes its name.

I knew someone very slim who was diagnosed with both CFS and fibromyalgia, in middle age. She adopted a "clean" eating approach to help with the symptoms.

Some years later, after continuing health issues, she was diagnosed with anorexia, then subsequently autism and some other mental health diagnoses. She now accepts her current diagnoses, and says that the alleged CFS/fibromyalgia were merely masking her other difficulties. At that time, she would not have accepted the severity of her mental health problems. The "clean" eating was actually part of a wider eating disorder.

I appreciate that this is merely anecdotal, but it does demonstrate the complexity of the subject.

I had CFS/ME for years. BMI 18/19 when diagnosed and lost more weight because eating was too tiring and I had no appetite and digestive difficulties. HTH

People who have autoimmune inflammatory arthritis conditions such as rheumatoid arthritis and psoriatic arthritis often do have fibromyalgia alongside. It’s very common

Something that I find really interesting is that the people that I know with fibromyalgia talk about the way that they were cared for as a child when they were in lots of pain in quite fond terms (almost word for word in some cases). For some of them I know that they had quite emotionally distant relationships with their mothers. I wonder of anyone has done any research on this.

According to my consultant my “robust mental health” and “can do attitude” are getting me through the fact that I AM in constant pain due to my fibromyalgia.
I work, I keep active (exercise hurts like hell but if I don’t exercise it will be worse). I don’t let on to anyone but my consultant just how bad the pain is because I don’t want sympathy but I can assure you my pain is very real. My dizziness is very real. My nausea is very real. This is not psychosomatic.
my condition is real, I know that it is currently untreatable but I also know that it wont kill me and with determination I can and will live my life and ignore people who think its all in my head, made up or non existent.

Yes, let's blame the mothers again. It's always the mothers.

I have hEDS (not fibromyalgia, so at least people won't question if my symptoms are real). I don't let it stop me doing anything (except on the occasion I have to, but that's not most days) and keep fit, live a full life. I'm just so used to it anyway. I am partly able to do this because I get management from people like chiropractors and massage therapists. I am fortunate that I can afford that at this point in life because that hasn't always been true and it's really unfortunate for those whose ability to work is limited because of it.

As far as mental health, I get on fine, but do have to be watchful that I don't burn out.

I wasn't aware of this change, is there any links you can point me to for a read. X

I hate this classic Mumsnet response.

Only a decade or two back mothers did all the 'mothering'. Most fathers were the 'earners'. We can try and erase history because it doesn't sound 'woke' , but actually mothers were the dominant parent and so poor maternal relationships often affected children more as the mother was the default parent.

Nowadays, it's different, parenting is seen as something both mothers and fathers are responsible for. But I'm afraid in decades gone by 'parenting/nurturing' was a mother's job.

I did toy with the idea of saying caregiver instead, but for the people I know it was mum, that’s just how it was for them. 🤷‍♀️

I prided myself on my resilience, didn't protect or care for myself particularly carefully. I certainly wasn’t cosseted as a child.

Sadly I didn’t learn how to protect myself and burnt out, result Fibro.

Also @Hhoudini

I have studied psychology and child/adolescent development and am well aware of the phases psychology has travelled through. One particular condition, in the 80s the mother was blamed, in the 90s it was the father for that condition. Now, we know that it's actually genetic susceptibility.

Look at epigenetics. We are learning more and more about genetic influences that might not be able to be controlled for. Children also have a lot of influences outside the parents. School is a powerful influence and that has been negative for many.

Psychology does look at influences but the tendency to parent blame is constantly reducing, or that is my impression. Some still need to catch up but it's happening.

Parent blaming can also be a way to avoid taking personal responsibility.

No parent is perfect. Often parents who get on that train are humbled when they find out that their own offspring have various issues that they would have blamed on parents before they became more educated.

None of this denies that illnesses can be driven by mental factors and stress, which at least can make things worse. As far as fibromyalgia itself, that would be true, however, even in this thread you can see that people often end up with diagnoses that no-one would call 'in their head' in the long run.

@Doodlessmoodles I wondered the same thing.
Then I went on a fibro course and found some of the others were overweight like me, others were really very slim. Many were a similar age to me, but there were some much older and some really young. Really able people, struggling to stay in work, and mums with young children struggling to keep up with them. All kinds of people- well, women.

The ones I got to know well had experienced domestic violence or were the family workhorse- the one looking after everyone else, with demanding parents etc.

Not fat, not emotionally unstable, not lazy. Just women in chronic pain.

I think my post must have come out wrong if it sounded like I was saying that kids have been left to themselves and this is what has led to fibromyalgia.

It just struck me that 3 people with no connection to eachother whatsoever described mum doing something very specific for / to them while they were crying in pain trying to do a particular activity. They also separately talked about not having a particularly close with mum but this being a special memory (sorry to make this gender role specific but it’s literally what they told me and probably because at that time, mum was the main caregiver).