Could this be fibromyalgia? What were your first symptoms?

[Tiredhotmess]

I don't have a diagnosis, but I have been experiencing various aches and pains for nearly 2 years now. I started off with neck pain, which I put down to poor posture while sitting at my desk. I saw a physiotherapist for a little while who diagnosed it as muscular and gave me some exercises to do, which didn't really help. The pain comes and goes; some weeks I have no pain at all, others it is there all the time.
A few months after this I developed a persistent, burning pain in my lower back. This is definitely aggravated when I stand for prolonged periods, and can sometimes be really debilitating. It ruined a recent holiday to Disney, where we spent a lot of time standing in queues. I've seen a physio again who said it was wear and tear! I asked for an x-ray or a scan and was refused because apparently it wouldn't show anything (wtf? 🤷). This pain also comes and goes.
I'm currently having a flare up of both the neck and lower back pain, but have also developed another niggly pain over the past 3 weeks: a deep, aching pain in the top of both shoulders.
So my question is, does this sound like fibromyalgia, or could it just be arthritis? I'm sick of being fobbed off by doctors and physios; I just want to know what's causing the pain.

Imaging is often unreliable in these situations.
Can I ask, do you exercise? What is your diet like? BMI? Also, how old are you?

The EXACT same symptoms as me
I've asked my Doctor several times, been fobbed off every time
I'm convinced it's Fibromyalgia so will be following closely, thankyou for posting ❤️

I’d ask for a referral to rheumatology. Fibromyalgia is a diagnosis of exclusion generally so you’d want the various forms of arthritis ruled out before any diagnosis.

Wear and tear is generally used to mean osteoarthritis and your symptoms would definitely point to arthritis.

Fibromyalgia is a label used when they've ruled everything else out. Once diagnosed you might find everything put down to that. A bit like menopause.
Better to get to the bottom of what is really causing your problems so you can get treatment and learn to manage symptoms.

I have a diagnosis of fibromyalgia. I have constant pain in the majority of my joints, exhaustion beyond exhaustion, brain fog and other bits and pieces.

i work with a physio and will do for the rest of my life. I have to keep doing my exercises and strengthening as much as I can. It’s not a case of doing the exercises for a few weeks and stopping, it needs to be prolonged and then built upon and maintained.

ive got various orthopaedic issues, sciatica, arthritis, hypermobility, numerous issues with my spine. I’m having an mri next week to look at progression and see if I might need surgery on my spine, but I don’t want that. It’ll likely just cause more issues. I’ve had issues for 25 years. I know my back hurts because it isn’t strong, I boom and bust with exercise and activity and it’s terrible for me. So now I do hydro weekly and physio fortnightly and my exercises daily and I’m building up consistent exercise.

I quite similar pains to what you describe OP and I have degenerative disc disease and osteoarthritis. I am mid-50s. I haven’t read whole thread, sorry.

My first symptoms were neck and shoulder pain plus frequent headaches, started 10yrs ago. Over the years the pain has progressed to literally anywhere in my body, back, toes, legs etc. Fatigue is a big symptom, and gastro symptoms, usually people already have an IBS diagnosis before fybromyalgia (mine is ibs-C).

I'm 55. My diet is reasonably healthy, and my BMI is within normal range i.e. I'm not overweight. I do pilates once a week, but admit I should probably exercise more.

Interesting. Perhaps it is just osteoarthritis then. I'm just wondering what's going to start hurting next 🤔 😩

I've had IBS for years. I do feel tired a lot of the time but I've just put this down to menopause and the fact I don't sleep very well.

Burning pains can indicate a trapped nerve. It is debilitating. If you can afford it, go see a private physio. You probably need to strengthen your muscles, but this isn't as simple as exercising.

You've answered your own question. I'm not judging, I'm in the same boat: menopause did a number on me, I sleep badly and don't take quite enough exercise. There's no magic cure IME, apart from more exercise!

Not sleeping well is also a symptom of fibromyalgia. Go on the NHS website and search for fibromyalgia and look at the list of included symptoms and see what matches.

Sounds like menopause to me, hrt helped all my aches and pains including two frozen shoulders and bursitis in my hips, lower back pain, and no sleep.

My first question is, have you had an accident to your spine or head? Not necessarily recently, just ever.
Fibro is an autoimmune condition.
I have a friend with it.
I have centralised pain syndrome which is caused by an accident.
It's absolutely debilitating.

Are you on HRT? Totally sorted my sleep issues. Not my aches n pains though.

Sounds more like wear & tear & poor posture. Menopause also causes joint pain.
Try some gentle exercise & maybe HRT.

To those asking if I'm on HRT, yes I am - I've been on it for few years. It helps for a while with certain symptoms, then it stops working and I have to change it. I'm currently on my 3rd different regime.
It has never done anything to help with my joint pains though.
I'm not sure if it's relevant, but I have also been diagnosed with ADHD earlier this year.

No, never had any accident involving my head or spine.

My first signs were pains in my joints, crippling fatigue & brain fog, I had recently given birth to ds & the consultant said that it was a trauma reaction to the horrific birth experience I had suffered. Ds was born in January & I got referred to rheumatology in June for suspected Rheumatoid Arthritis but was diagnosed with Fibromyalgia instead.

I was diagnosed with fibromyalgia after a psoriatic arthritis PsA diagnosis and eventually found a biologic drug that helped somewhat with my joints, but I still get pains in my muscles, often tingling / electric type pains in my arms and / or legs. I get horrible pain at the top of my neck/base of skull at times, in my clavicle and back. Always for pain on my shins but that maybe enthesitis to be honest. At a PP said one of the worst aspects is the chronic fatigue … it’s awful and I’ve had to retire with ill health as I just cannot get through days, along with the unpredictable pain which sometimes means I can’t work one day due to flare up, or for weeks with a bad flare up
I thought at first, before all these diagnoses that it was perimenopause… HRT hardly too the edge off the issues hence referral to rheumy after I did my own research and GP understood and referred me, that was 3 years ago

Have you tried taking a good quality omega 3? I needed it since peri kicked in