Fibromyalgia - what are your symptoms?

[cantthinkofausername26]

If you have fibromyalgia, what are your symptoms? Do you have flare ups or is it constant?

GP thinks I may have it but I don't think my symptoms match up. She said it differs from person to person.

It's not an actual diagnosis it's a label they give when they have ruled everything else out. Have you seen a rheumatologist?

I've been diagnosed with it.
Extreme tiredness/chronic fatigue
Widespread aching bones and joints especially feet, knees elbows hip collarbone.
Poor quality sleep

Generalised pain.
A series of sports type injuries despite doing no sport- tennis elbow, that shoulder thing bowlers get…
General over sensitivity- noise, light, people 🤣
Felt bruised all over. Hurt to stand up, walk, move, lie in bed…

Poor sleep.
Tiredness

I’m using medication, have reorganised my life and addressed life style issues.

I’m now lacking energy and endurance, but relatively active, mobile and able to work again.

You may not have fibro- but if you do, don’t hear their advice as being ‘it’s all in your head’. There are ways of understanding it that make you far better able to cope with it.

Tingling feelings
sunburnt feeling skin
flesh crawling sensations
very sensitive teeth
if someone pokes me gently, it REALLY hurts
achy
freezing all the time
dizzy
visual disturbances
headaches
IBS diarrhoea
anxiety
bad sleep
extreme fatigue
abdo pains

I take meds to try to keep these things in control

I also HATE noise, bright lights

Oh wow, ok so I do have a LOT of those symptoms, maybe GP is onto something. Thanks for the replies x

Not what I asked

Oh yes, the weird crawly thing.

Stiffness. I walk like a puppet if I’ve been in one position for a while. I can’t sit still too long.

Some muscles are sort of rigid- like old plasticine. It was a masseur who commented on it. Lots of micro scar tissue, and the muscles felt cold and stiff instead of pliant (she actually said dead!).

Brain fog. Bad memory.

IBS and migraine were old diagnoses, but they’ve been helped by the fibro medication.

Certain points of your body will hurt in a gadzooks wtf kind of way. Rheumy will prod and poke in those points & base it on that, if that's still the way they diagnose.? I've got a few msk things going on so I think fibro could have been tagged on as a possible. I think it can cross over with chronic fatigue/me/long Covid. My two friends with it seem to present differently to each other & me. The cog fog can be quite draining. I've had episodes of constant micro napping on & off all day like narcolepsy.

Always tired, brain fog, constant pain in feet and wrists (literally every second), flaring pain in knees, hips, shoulders, sensitive to loud noise and bright lights, wobbliness, so tendency to fall over if I look up or to the side or just generally don't look straight ahead when walking.

It doesn't help when someone insists it doesn't exist .. it took us all long enough to get any diagnosis at all.

Well that's absolute bullshit.

From reading this, i think I have it. I have an undiagnosed pain condition. Some days I manage, others days im in so much pain, pain killers won’t touch it

The last doctor I saw refused to diagnose me with fibromyalgia cos to him “it doesn’t really exist. It’s just an excuse”

He wasn’t very nice

Gosh, looks like I've got a long road ahead. The first dr I saw said ME/CFS, but they wouldn't accept my referral at the hospital because I have type 1 diabetes and chronic anaemia and "it's probably one of those causing the symptoms" what a cop-out. Second dr has suggested she thinks fibromyalgia. I'm seeing her Friday with my ever increasing list of symptoms.

Pain meds as such don’t address it @Soubriquet

It’s more about calming down a hyperactive nervous system. One of the drugs they use is prescribed for nerve pain like shingles.

Mindfulness and self care, stress management, help address it. That doesn’t mean it’s ’all In the mind’. It means that it can be managed and improved by settling an overwrought twitchy, sensitised nervous system.

Make sure they test your B12, I went through months of alleged fibro and it turned out to be pernicious anaemia....

The CFS/Fibro differential is whether fatigue or pain are dominant. I get fatigue with my pain. CFS suffers may get pain with their fatigue!

This is a load of rubbish, it is a formal diagnosis, posts like this do not help those of us struggling with it.

I don't have it, but I thought I'd pipe up as a friend does.

She describes it as having 8 (I don't know why '8') different types of pain, firing at high intensity all the time. She says it's like being burned, frozen, stomach ache, headache, cramps, stabbed all over, etc, constantly. When she takes a painkiller, it might take away one, but all the rest stick around.

For those saying it's fake, or a made up illness, you'd only have to look at her to know it's real. Imagine how someone would look if they had just been beaten up again and again, and due to that pain, literally slept an hour a night because they physically couldn't manage to stay awake any longer, waking up again because of the pain.

Don't get me wrong, many people DO fake it, because it can't be proven and it's easy to say you're in pain, but the real illness, whatever it is, I wouldn't wish on anyone.

I do t think it's fake or made up but I do think it's given as a diagnosis before being thoroughly investigated.

Many GPs are happy to diagnose before investigating fully

There's no specific test so tests for other similar illnesses should be completed. For example Lyme,MALS, lupus, vasculitis, arthritis, polymyalgia rheumatica, ankylosising spondylitis, POTS, MCAS coeliac, pernicious anemia vit deficiencies etc.

I'd be happy to accept a diagnosis once bloods scans etc have been done.

I was diagnosed by a rheumatologist after being tested for RA, MS and a multitude of other of things. I don't take meds but eat very clean, try to keep stress levels down and learnt to pace myself. I am am having a slight flare in my hands now but nothing unmanageable

Same here. GP was very thorough re vit b, d, iron and cortisol levels.
Rheumatology did a few more.

Fibro is a diagnosis of exclusion and it’s comorbid with other things, but it’s real.

I do t think it's fake or made up but I do think it's given as a diagnosis before being thoroughly investigated.
This.
The reason I said that is because I was "diagnosed" with fibromyalgia. It was years before I actually got to the bottom of my condition which is a form of rheumatoid arthritis. It seemed to be convenient for doctors to hang every problem on and no need to look any further.

Agree @Boffle - I was diagnosed with fibro - it took an ruptured aneurysm and 3 weeks in icu to get diagnosed with what I actually have.

Sounds very similar to peri/menopause symptoms. I can relate to a lot of them but they diminish with hrt.

EDS by any chance? I was referred to rheumatology because I raised EDS as a possibility. But no, he said not. Just fibro.

Fibromyalgia has over 200 symptoms.. some of us have a few.. some of us have many.
Fibromyalgia is usually causes by some kind of trauma.. either physically or mentally ( mine was both). Drugged gang raped).
I run a Fibromyalgia support group.
I was diagnosed by a Rheumatologist and psychiatrist many many years ago...
Honestly Google is your friend for looking up the symptoms.
I am now 66 and have at least 5 of the symptoms every single day.. not always the same symptoms...during bad flare up days/ weeks.. l can have on average 50 of the symptoms in any give hour.
I wish you all the luck in the world and hope you get the help you need and deserve.. don't give up... much love.💐