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Original poster

To feel devastated at potential diagnosis?

61 replies

TaylorsVersion1 · 28/06/2024 22:04

Hi all,

I've been suffering with some widespread pain for about a month or two. I woke up one morning completely exhausted and aching everywhere and thought I was getting the flu but the pain and exhaustion never actually went away. It was mostly manageable with some days/activities being worse than others but nothing too bad.

During this time I've also suffered with migraines, Toliet issues etc but didn't really know what was going on and just thought I was unwell.

My pain today was a 10/10 and it was everywhere, I could barely walk and I was exhausted (I fell asleep in the taxi) I messaged the doctors for the first time about it today as it was so bad (I nearly went to hospital because i genuinely thought something was really wrong but thought what could they really do)

The doctor gave me an appointment for half an hour later and examined me, he said they were going to do some bloodtests to rule out anything metobolical (I think he said) but suspects it may be fibromyalgia and that's terrified me.

My friend has it and she needs a stick and a wheelchair, I have two young children and were going to go back to college to train to be a hairdresser and I feel like everything's sort of been taken away from me like how am I going to cope with two young babies and have fibromyalgia.

I know I'm jumping the gun a bit but I don't know what else it could be, all the symptoms seems to be fitting.

Please can I have some positive stories from others who's been diagnosed with it, I just need some good news today I think.

OP posts:
HazelLion · 28/06/2024 22:27

They really need to exclude other conditions before they decide it's fibromyalgia.

TheOriginalEmu · 28/06/2024 22:26

BeaRF75 · 28/06/2024 22:15

I know friends diagnosed with fibromyalgia. They are fine - you wouldn't know they had any issues. It is a bit of a "dustbin diagnosis", and can be quite controversial, but it is very manageable. Definitely no need to over-react.

It CAN be manageable. For some people. Not all. And I’m sure your friends with fibro definitely know they have it. 😒

BestZebbie · 28/06/2024 22:25

If you get to a point where you are in pain when you do most things and/or lose mobility, then please don't try to struggle on to avoid "a stick and a wheelchair" - both of them will free you rather than hindering. A mobility scooter is also a good choice if you can cope in your home but don't have the stamina to go out - you can still take toddlers to a park on a scooter (and on days out by yourself if you have one that collapses and you can get into a car boot in pieces) and push a swing from sitting on the ground!

BabyFedUp445 · 28/06/2024 22:25

Well it could be worse but it absolutely affects the quality of your life and your choices going forward. Deep breath and take one day at a time. Your symptoms sound scary and of course anyone would be devastated. But it has not been confirmed and the diagnosis can take a while. You can find the inner strength, and your kids will just be happy to have you around.

StMarieforme · 28/06/2024 22:23

BeaRF75 · 28/06/2024 22:15

I know friends diagnosed with fibromyalgia. They are fine - you wouldn't know they had any issues. It is a bit of a "dustbin diagnosis", and can be quite controversial, but it is very manageable. Definitely no need to over-react.

This is very ignorant and ableist.

Fibromyalgia is a variable condition, but is life altering for most. That's not to say therapy can't help a lot.

But you are minimising it, which those with fibromyalgia have had to battle against for decades.

Please stop.

TheOriginalEmu · 28/06/2024 22:21

Blackcats7 · 28/06/2024 22:11

Fibromylagia is not the worst condition in the world by a long chalk. It is variable and there is no reason to think it will be very disabling. Cross one bridge at a time.
I actually opened your thread thinking you were terrified you might have cancer (like me) or mnd. I would swap to fibromyalgia like a shot given the choice.
It is all relative.

I have fibromyalgia and currently having cancer treatment and this kind of ‘oh well it could be worse’ is really shitty.
cancer can be treated, it can be cured, no one calls you a liar, people are understanding when you can’t do things or need time off work. None of those apply to fibro and people are actively mean and shitty about it.
Im genuinely flabbergasted how much more people care about my cancer than they ever have about my fibro. So whilst cancer can be worse, Illness top trumps isn’t a good look. OP has every right to be worried.

@TaylorsVersion1 try not to get ahead if yourself, GPs aren’t actually able to diagnose fibro, you need a specialist to do that. Make sure you eat as well as you can, take vitamins and take care of yourself.

Original poster
TaylorsVersion1 · 28/06/2024 22:20

Thank you both.

I'm sorry you've been diagnosed with cancer and I apologise for making my thread sound worse than it is. I honestly meant no offence to anyone.

My immediate thought was my friend who needs a stick and sometimes a wheelchair and I just panicked that I wouldn't be able to play with my children properly or do nice things with them (which I know is nothing compared to having something terminal) and thinking I might not be able to pursue a career in hairdressing. I just got upset probably because of the pain and not feeling well as it is.

Thank you for bringing me back to planet earth. I can only take it one step at a time and some days are absolutely more manageable than others and on tough days I'll just have to take it easy - that's all I can do really.

OP posts:
Barrenfieldoffucks · 28/06/2024 22:17

BeaRF75 · 28/06/2024 22:15

I know friends diagnosed with fibromyalgia. They are fine - you wouldn't know they had any issues. It is a bit of a "dustbin diagnosis", and can be quite controversial, but it is very manageable. Definitely no need to over-react.

Agreed.

HildaOgdensMurielle · 28/06/2024 22:16

Oh love, that’s shit.

I have fibro (and M.E amongst other things) and it isn’t the most fun- but you do learn to live with it, and nearly everyone has periods where they feel better and have less pain.

Making sure you get a medication regime that works for you is a big thing, and also if you have a partner make sure they are really well educated and understand what this means for you- the more support you have the better.

Take it easy on yourself.

BeaRF75 · 28/06/2024 22:15

I know friends diagnosed with fibromyalgia. They are fine - you wouldn't know they had any issues. It is a bit of a "dustbin diagnosis", and can be quite controversial, but it is very manageable. Definitely no need to over-react.

Blackcats7 · 28/06/2024 22:11

Fibromylagia is not the worst condition in the world by a long chalk. It is variable and there is no reason to think it will be very disabling. Cross one bridge at a time.
I actually opened your thread thinking you were terrified you might have cancer (like me) or mnd. I would swap to fibromyalgia like a shot given the choice.
It is all relative.

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