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.

Forgot to add. In the past week I have been so stressed. Since yesterday I’ve had an extremely tight calf so I can barely walk, as well as widespread muscle aching. It feels like post-exercise soreness despite having done none!

I have a lot of these symptoms and I have celiac disease - have you been tested for that?

I have! It came back negative. I did try going gluten free for a while too and sadly it didn’t change anything

Hello, in my experience fibromyalgia is what they call it when in essence they can’t find anything else.

Before I read the other person‘s post, I was going to say it might be some sort of allergy. I’m aware this sounds ridiculous, but I have a severe dust my allergy and when it’s bad it feels like I have whole body flu. Truly feel horrendous. headache, brain fog, complete fatigue exhaustion, bloating, stomach pain, delayed periods, eyes hurting, a whole host of symptoms.

I know lots of other things like coeliac disease or allergic/immune issues have this sort of symptom pattern. You can run an allergy blood panel test, and this is something worth asking for.

Like PP said; fibromyalgia is a diagnosis when you can't find anything else. Not meaning there isn't anything else going on. I would insist on keeping looking because if they find out what you have there might be a treatment. No point in saying you got fibromyalgia because there is no treatment.

The problem with a diagnosis such as fibromyalgia is that it’s a black box ‘condition’. The medical term is idiopathic which means the doctors don’t know. Sure, it’s nice to put a label on it and they can offer some meds to help but it doesn’t really tell you anything you don’t already know.

Your body is very unhappy and this manifests as a set of symptoms. What you are describing is very common.

If you can work out the root cause of what is driving this then you can begin recovery. This is not easy but I can offer you one major clue: mainstream allopathic medicine does not have your answer. Dig deep and go searching. People recover from this stuff all the time but it takes perseverance and patience.

Best wishes to you.

It sounds like you do have fibro. I think some people on here are confused though, it is a real disease and is diagnosed by exclusion purely because there isn't a test for it. There is treatment for it as well, and a diagnosis will be a pathway into chronic pain physio, counselling, seeing the pain service and things like that. Definitely ask your doctor about it though. They might send you to a rheumatologist for a proper diagnosis though. Good luck!

It’s still up for debate as to whether fibro is real. Some believe the symptoms are psychological and diagnose fibromyalgia as they can’t find any medical grounds for having such symptoms.

Personally I have no idea if it’s real or not, I’m no expert but because it is still up for debate with the possibility of being psychological I can’t help but think ‘okay, so the doctor just wanted you to stop coming in with all these ‘non-issues’, so finally said ‘okay you’ve got fibromyalgia’ just to get rid of you.

I know that’s not fair, they should really put the is-it-real or is-it-not to bed!

Look at hypermobility. Mine is severely impacted by hormones. Regular exercises and stretches help, prescribed by a physio, and done every single day. Unfortunately I have to use a private physio, NHS don't have the time or often the knowledge to help.

Others are right, fibro is a non-diagnosis. It is a "we can't find what's wrong so here's a word you can use because we can't be bothered to figure it out" diagnosis and won't help. It doesn't have any treatment beyond "here have some more pills that won't make any difference to your life beyond making you high".

As a diagnosed ( by a rheumatologist) fibro suffered who has also studied a pain management certificate in other species I believe it is a thing and belong to the same group of conditions that include allodynia. In fact I think I have some features of allodynia.
Yes you will be given drugs they don’t always help.
You have to work out what works for you - for me it is two sessions of reformer Pilates a week, a longer journey to work so I listen to my audiobook and decompress, don’t meet clients in Tescos and don’t work quite full time. I need to manage my sleep - when my average sleep is low then I have more pain. I need to eat a certain way, limit alcohol.
Do my mindful activities choir once a week and crochet.

Have you seen a rheumatologist? I have a lot of your symptoms and turns out i have hypermobility and some deficiencies. After a year of physio, a lot of strength training and pilates, and supplements I feel a lot better. It's been a hard long road to starting to feel better.

Treatment?? That's not treatment, that's just brushing it away to shut you up. It's false hope.

OP, go back to your GP and get everything else excluded first, and ask for a referral to Rheumatology as it could be a autoimmune condition.

Sounds like worth exploring hypermobility, HSD or potentially Ehlers Danlos (EDS) symptoms of hypermobility can be like you describe, and related conditions are POTS and MCAS

I was wondering about hyper mobility and also potentially hormonal factors. Are your periods "normal" do you do any tracking of symptoms alongside cycle?

This. I would never accept this diagnosis its what drs tell people to make them go away and stop moaning the drs are missing something.

Fibromyalgia- there was an update the other day and it was found that the nerve cells are misfiring and causing pain - some woman tried amitrypline and it helped her enormously-

Amitriptyline is an anti depressant

Op do you suffer health anxiety? I’m not sure people are doing you any favours with all these suggestions, as I suspect it’s got you googling to see if you’ve got it. Are you?

Fibromyalgia is a diagnosis I absolutely refuse to accept. I live in fear of it. My mum had fibromyalgia.

In the sense that she had pain the doctors refused to believe was real or properly I vestigate.

My mum had scoliosis, hyper mobile joints, osteoarthritis, all of which account for the pain. She also had an undiagnosed congenital heart defect. Which killed her. At 56.

I now have chronic pain conditions, I refuse to even entertain a fibromyalgia diagnosis. As a diagnosis it means they either don't believe you have real pain so don't want to investigate further or they believe the pain is real but are giving up looking for why.

After insisting on investigations, including MRIs I have badly damaged ankles from years of sprains, a separated pelvis, a slipped disc, osteoarthritis in 1 hip, severe endometriosis (they only found this during a c section having disbelieved my pain levels for years) and I have gallstones. If is let them they'd have pinned me with fibromyalgia when my ankles got really bad 10 years ago.

You realise this is saying it is pain not really caused by anything physical? It's saying it's phantom pain. It's a lazy and dangerous diagnosis

It would also mean anytime you went to the drs in the future about anything they would blame fibromyalgia.

How about cough and body aches? I’ve had similar symptoms and I wonder if it’s because I’ve been working with a fan on (that may be circulating dust)

It's basically a codes way of doctors to let other doctors know they think you're at it.

Have you been through a trauma? I think fibromyalgia can start after something traumatic. My SIL got it after she broke her neck. I should also say that she has hypermobility also.

You don't think she just has actual pain residual from the broken neck? Calling that fibromyalgia is madness