To think I might have fibromyalgia?

[PinkSquare16]

I’m 29F, and I feel like I’ve been in and out of the doctors for various reasons for 10 years, usually to no avail. I have a diagnosis of PCOS and ADHD.

For around 10 years I have had:

• Chronic neck and back pain with persistent trigger point (one particularly area in my neck burns every day. Physio hasn’t helped at all)
• Persistent muscle tightness (especially calves)
• Persistent fatigue, never feeling refreshed after sleep
• Frequent muscle twitching
• Memory and brain fog issues
• Poor sleep and insomnia at times
• Migraines
• TMJ (jaw clicks every time I open my mouth, and I have persistent facial pain and headache)
• Long-term bloating which is significantly bad right now
• History of anxiety

I feel like doctors have looked into my bloating, my TMJ, my tiredness, and my neck pain and nothing has ever been found which has just made it all the more confusing.

But then I found out about fibromyalgia, and my god….! This could potentially explain everything?!

Any experiences or thoughts much appreciated.

I have fibromyalgia and it is a real diagnosis. You have just described how i feel most days.

I have fibromyalgia, diagnosed 12 years ago by a rheumatologist. Some of the comments on here are very unkind.
I went from full time work in a job I loved, running, hiking, dog walking, horse riding, mum of two teenagers to a physical wreck.
No history of depression or anxiety.
Yes I'd love it to be something else that has a cure, or just treatment to manage my health.
I certainly don't "revel" in my diagnosis and I'm not a hypochondriac @HortiGal , can't speak for your friends, but most people don't know about my condition because they only see me on my better days.
I have awful side effects to everything I've been prescribed, amitriptyline and nortriptyline both gave me horrendous hangovers, pregabaline made me feel I was losing my mind, gabapententin made me keel over in the street.
So my life is all about pacing (spoons theory), OTC meds, resting before and after busy days, limiting social settings, partly because I'm very private about things, I've never been one to tell people about how I'm feeling, and I have a very small window of masking.
@PinkSquare16 have a chat with your GP about things. I had a raft of blood tests before being referred to rheumatology. I hope you've got a nice GP!
Unless it's "women" stuff I always try to see the male GP about health related stuff, the woman GP usually says "it's the fibro/woman of a certain age" if I go with anything new.
I'm on the verge of a flare up, my thighs are burning, everything hurts, and I'm looking forward to Saturday with no commitments!

My two cousins were both diagnosed with it by the same GP in the same week. very odd because they are both leading normal lives, working, looking after young kids etc. I help with disability forms and virtually every client has it often alongside other illnesses but rarely diagnosed by a rheumatologist as I imagine there are way too many cases for them all to be referred to a consultant.

Well,yes,that's what I said in my post.

its an old anti-depressant but its very good with pain relief, I take it at night.

@Pickledonion1999 my comment has been deleted as obviously we’re not allowed an opinion without someone complaining.
Is it not odd or concerning that GPs are so easily giving this as a diagnosis?

The pain can be both very real, and not have a physical cause. Psychosomatic illness is very misunderstood. It doesn’t mean it’s made up, or phantom. It means the symptoms are caused by a psychological condition rather than a physical disease.

The most effective treatment for illnesses such as fibromyalgia is often psychiatric or psychological. Unfortunately, due to stigma and misunderstanding, it can be difficult for people with these conditions to accept that treatment.

Fibro covers a million symptoms as it’s a not real illness made up to cover a million symptoms and fob women off. How many men get diagnosed with it.

I got told I had it years ago when I kept going to the doctor about an ailment. It’s their ‘go away’ diagnosis. Conveniently there’s no treatment for it.

I agree, people tend to react like they are being told they have made it up if it’s psychosomatic and that’s not what it means at all, the pain is real, they feel it.

It just means that there is no physical cause for most and it is due to issues with their brains, it is a real condition, but there is no test for it. So by exclusion it is diagnosed, of course some may have misfirings in their brains so they feel pain, others may have depression or anxiety that also causes those feelings of pain. It doesn’t make it any less real.

statistics show fibro is ovee diagnosed by over 70 percent, often given when no explanation for the persons pain and because the person will keep coming back wanting tests, wanting a diagnosis. And don’t want to hear it’s depression, anxiety etc, and won’t accept it.

it’s not something any one should want a diagnosis of, unless very certain. It’s far better if it is due to mental health that is diagnosed and then resolved. Otherwise the person is in no man’s land for ever more.

OP before trying to diagnose yourself with anything I would seriously recommend either checking previous blood test results or, if you can afford to do so, pay for a private blood test from a company such as Thriva.

The NHS will only flag up deficiencies if they are below a certain point, they will not prescribe you anything to get your levels up to optimum. For example, the cut off for Ferritin is around 30 I believe (your iron stores) before they will consider putting you on any type of supplement but your levels should be between 75 and 100.

I had so many of the same symptoms as you and one by one I corrected where I needed it and I feel back to normal now. I had low vit D, low iron and low B12. All now normal, all symptoms, including anxiety, have pretty much gone.

I really don’t think the poster was saying that at all, nervous system issues do cause real physical symptoms - I had real issues for 8 months post covid, ( and hadn’t seen a doctor for 20 years apart from smear tests) my nervous system went totally nuts, the ( top end and paid for ) neurologist told me post viral syndrome frequently caused real physical issues , with some it’s persistent coughs or gut issues, with others it’s migraines, sore eyes, twitches- the nervous system is central to a lot of functions and a misfiring can affect so many things- as can simple vitamin deficiencies -in my case it gave me chronic pins and needles in feet, buzzing in lower legs and1 finger, acute head pain where it joins spine, a burning forehead, spacey type dizziness randomly- it was really frightening, was convinced it was MS or brain tumour —what sorted it for me as advised was a lot of Wim hof breathing sessions twice a day, stretching excercise, boosting vit B12 and vit D , magnesium spray on feet and lower legs and a low dose beta blocker for 3 months. Eventually it all receded -

I developed fibro after being widowed in my forties, and had lost my career by the time I turned 50. I'm mostly housebound.

The comments here saying it isn't real are waaay out of date. They've known since at 2021 that when antibodies from people with fibro are injected into mice, the mice get fibro symptoms. They've also known since about 2024 that there is an autoimmume component - this is all very searchable.

I was diagnosed via the American College of Rheumatology method - I think someone else has mentioned it. There are no other diagnosis for me, over the course of two years I took every one, and had to pay for the privilege because unfortunately attitudes like the ones unhelpfully perpetuated here are also rampant in the NHS.

OP, for your sake I really hope it's something else because the very worst thing about this diagnosis is other people's attitudes and how upsetting it is coming across comments like these when you've lost almost everything to something that apparently doesn't even exist!! All of the very best to you.

I haven't read the whole thread but a lot of those things are symptoms of magnesium deficiency

This isn’t quite true.

the 2021 study suggested some autoimmune component but it’s failed to be replicated and, to date, there is absolutely no consensus that it’s an autoimmune disease. In fact, even those who push the autoimmune dialogue fail to agree on what the mechanism is.

Fibromyalgia shows no consistent, disease-specific antibody marker, antibody profiles vary widely between patients and immunotherapy has limited to no effect. This all points against it being properly autoimmune.

Also, the NHS runs off evidence and fact based diagnoses and treatment so, yes, they’d agree with this. I assume you had to pay a private doctor to diagnose you?

Luckily that isn't what I said then.

The 2021 study, where the mice were injected with antibodies and subsequently got FMS symptoms, has been replicated and never debunked. It's clearly a bit more than 'all in your head'.

I think you mean the 2024 study that suggested autoimmune component, which was only a couple of years a go, and that peer reviewed research is still ongoing - which is why I didn't trolley up and say that it was definitely autoimmune??? Did you just get that from AI on Google? KCL is my former uni and I've been following the research for about two years, it's actually all quite promising.

I already said how I was diagnosed - the ACR criteria - I was very clear about that. They obviously don't use studies still in peer review. You seemed to think you'd made a good point? Many NHS pain consultants use the same ACR criteria as private - I only paid because I was desperately trying to save my career, and the NHS waiting time for nerve conduction was at that time over a year.

OP - this poster and others have categorically said that fibro isn't a real illness in an early post. It's fucking appalling and please don't be disheartened by these kinds of attitudes.

Look into ehlers danlos syndrome. I would not try for a fibromyalgia diagnosis immediately as when that is given they (medical staff) just stop there like it is an answer. I don't believe it is an entirely diagnosis but am underlying group of symptoms to something bigger that we dont fully understand yet. With this kind of thing you will need to do all of your own research, tracking and investing, as the doctors usually say what do you want and what do you expect me to do about it. When they suggest medications like amitrypitaline and gabapentin look into them before taking them and track how you feel on them with actual notes as they often make you feel terrible in different ways and then it is up to you as to which terrible feeling is worse. They can, of course, help but be prepared.

TMJ is always stress related and causes general facial pain due to constantly clenching and relaxing muscles - it’s intermittent because stress levels vary. Treat the stress, treat the TMj.

The rest of your symptoms suggest dietary insufficiency either due to restricted diet ( picky eater) or some sort of mal absorption.
Muscles need magnesium and B12, amongst other vits and minerals. Either your diet is low on these essentials or your body isn’t effectively absorbing them. Some medications interfere with absorption so it’s worth reading up on any meds you may be taking.

I take lansoprazole for reflex which interferes with magnesium absorption. Once I started supplements the muscle pains and symptoms improved significantly.

In addition many of the symptoms you describe are related to inflammation. You can chase your tail trying to find the cause, or maybe try antihistamines daily. Hayfever can lead to generalised elevated inflammatory response. Again I take loratadine to reduce inflammation from common triggers.
Modern life is full of allergens both artificial and natural.

For the OP and for many other posters, the hypermobility and possible ehlers danlos can lead to cranialcervical instability l, which causes so many of these issues, including the headaches, occular neuralgia, pain and numbness down arms and so much more. It also leads on to dysautonomia as it affects the vagus nerve that goes down from your head that can impact so many things as it is the thing telling your body to do the things it does without thinking, such as gut processes and heart rate.

Tight muscles also come from hypermobility as they hold on for dear life as your joints are loose.

Inflammation is a consistent characteristic with this and close links with gut problems and pelvic issues/endometriosis.

Hormonal fluctuations have a big impact but this can be at any time of the month and not always just following your cycle. Progesterone increases for example (other hormones help cause trouble.) Can lead to increased joint laxity. Note that there are starting to be studies about this around increased risk of injury to women in sports during their periods for example.

I am appalled at the number of posters on here claiming that fibromyalgia isn’t real!
How dare you belittle a very real and debilitating disorder!
My husband is a sufferer, bought on after a bought of scarlett fever. He’s in so much pain sometimes I can’t even give him a hug as it hurts too much.
So maybe before you start slagging off a very real disorder, you need to walk in someone else’s shoes and stop being a Google doctor and leave the diagnosis up to properly medically trained professionals!!!!

As an HCP with autoimmune condition I can confirm that fibro is often called fabro-noalgia (not to the patients obviously!) and is not seen as a real thing.
I have known people play ‘fabro bingo’ too.
It’s uncanny the common factors (none of which are health related)

My cousin supposedly has this, she's a complete nightmare and constantly at the doctors/hospital due to health anxiety. She can go off to America on a holiday when it suits her but has to claim disability as half the time doesn't get out of bed as she says she also has chronic fatigue - another condition that seems to be handed out when they can't find anything else.

I don't for one minute think everyone is faking or imagining it though. I've known young people whose lives have been devastated by CF. I do think they are incorrect diagnoses though and there is a reason for the terrible pain or severe tiredness if doctors mind to dig enough. For some people it might be auto immune or celiac disease, for some people if will be the after effects of a virus or bacterial infection in the same vein as long covid, for some it might be EDS, for others it will be due to stress or anxiety or psychosomatic (and yes from experience I know that feels as real as anything).

I think CF and FM are poor diagnoses to fob people off with because it's cheap and easy.

I also think people severely underestimate the effect stress and anxiety can have on the body and often can't believe that that could be at the root of their issues.

I remember first hearing about it with a discussion with my boss at the time who was a rheumatologist. He said it was what they said when they didn’t know what was wrong.

A couple of years ago it was me sitting in the patient seat in rheumatology as I have psoriatic arthritis. The rheumatologist said he thought I may have fibromyalgia as well and I pulled a face. He said he knew what I was thinking but these days the thinking is that it is something to do with the brain’s response to pain and that things have moved on.

I am so glad you posted this. Reading some of the comments is just awful. The ignorance of some people is shocking
I was diagnosed with fibromyalgia in 2011. It’s has been completely life altering.

I have to deal with debilitating pain everyday. It limits how far I can walk. I can’t do general physical tasks around the house.
that Is day to day. When I get a flare, I am overwhelmed, I cannot stay awake, I have to sleep for hours and hours.
i take lots of medication, it helps slightly

luckily, my doctor has been helpful and has told me that the medical profession now think fibro is autoimmune

I would not wish this on anyone but please do not say it isn’t real when you have no idea whatsoever about living with this chronic condition

Sending you gentle hugs lovely.
My blood was absolutely boiling reading some of the responses and I had to rewrite my post several times as I just wanted to cuss and rant!
When hubs has a flare he will get up, go to work, come home eat and go to bed and repeat. I’ll go up to bed with him at 7pm and sit and read while he rests with his arm over me to try and support his chest and relieve some of his pain.