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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think I might have fibromyalgia?

38 replies

PinkSquare16 · Today 19:30

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.

OP posts:
Boxdyewilldo · Today 22:06

Velumental · Today 22:02

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

Not according to the rheumatologist. It was an undisplaced neck fracture

Whaleofatim · Today 22:07

MehCantSing · Today 21:21

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!

If you haven’t got it the you aren’t qualified to make this statement. Fibro pain is very real.

youalright · Today 22:09

Whaleofatim · Today 22:07

If you haven’t got it the you aren’t qualified to make this statement. Fibro pain is very real.

Nobody is saying the pain isn't real we are saying fibromyalgia isn't real

Velumental · Today 22:09

Whaleofatim · Today 22:07

If you haven’t got it the you aren’t qualified to make this statement. Fibro pain is very real.

The thing is I believe you are in pain, and I believe it has a cause. I just don't believe fibromyalgia is a diagnosis that shows doctors believe you. It's what's left when they give up looking for a diagnosis

TheeNotoriousPIG · Today 22:10

I can't vouch for or against fibromyalgia, but as I was reading through your list, I thought, "OP sounds like me, and I have anxiety", and then there it was at the bottom of your list! I get the neck and back pains, persistent muscle tightness, poor sleep, insomnia, poor memory, muscle twitching, migraines, etc. The massage lady that I go to said that it was no wonder that I have migraines due to the tension in my muscles, particularly in my back and shoulders. More recently, I've had to be medicated to try to control my migraines, as the latest ones are debilitating. I take melatonin occasionally, which seems to help me with sleeping. I struggle a lot when I am stressed, anxious or my muscles are in pain.

As for the bloating, do you have any food intolerances? I get it when I eat bread; it turns out that I am intolerant to yeast and wheat.

Whaleofatim · Today 22:14

Velumental · Today 22:09

The thing is I believe you are in pain, and I believe it has a cause. I just don't believe fibromyalgia is a diagnosis that shows doctors believe you. It's what's left when they give up looking for a diagnosis

https://www.theguardian.com/society/2021/jul/01/fibromyalgia-may-be-a-condition-of-the-immune-system-not-the-brain-study

I don’t agree. I think that people who have been diagnosed with it tend to all have very similar patterns of pain. Studies are ongoing which show it may be an immune condition . Fibromyalgia is the name for it presently.

Fibromyalgia may be a condition of the immune system not the brain – study

New research challenges widely held view of the condition and could pave way for better treatment

https://www.theguardian.com/society/2021/jul/01/fibromyalgia-may-be-a-condition-of-the-immune-system-not-the-brain-study

MehCantSing · Today 22:20

Whaleofatim · Today 22:14

https://www.theguardian.com/society/2021/jul/01/fibromyalgia-may-be-a-condition-of-the-immune-system-not-the-brain-study

I don’t agree. I think that people who have been diagnosed with it tend to all have very similar patterns of pain. Studies are ongoing which show it may be an immune condition . Fibromyalgia is the name for it presently.

Yes it’s still being studied and debated.

My cousin was diagnosed with fibromyalgia and when her dad died she lost 4 stone through stress and no longer had fibromyalgia. In her case it looks as though her weight was causing her the pain, she mainly had it in her legs.

Coulddowithanap · Today 22:30

youalright · Today 21:52

Amitriptyline is an anti depressant

It's also used as a pain killer.

Raspberrywhite · Today 22:40

youalright · Today 21:52

Amitriptyline is an anti depressant

It is used for both Trigeminal Neuralgia, and for migraine and tension headaches.
It helps with nerve sensitivity and pain but has a mild anti depressant aspect too.

My son takes it to manage awful Trigeminal symtoms from a wisdom tooth removal and my husband was recently put on it for tension headaches.

Both find it effective.

I certainly thought Fibro was an immune condition.

OP has your CPR level been checked?
That indicates your inflammation marker.
My suddenly went through the roof last year when something happened and my body ceased up. My CPR was high and I was put on Prednisolone which is a steroid.
I didn't like it so turned to a very strict no sugar, anti inflammatory diet, i have reduced dairy, gluten and meat by 90%, and the improvement has been transformative with all inflammation gone and my other tests coming back transformed too.

Happyhappyday · Today 22:52

PinkSquare16 · Today 19:30

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.

Do you grind your teeth?
The neck and back and TMJ all could be caused by that.

The insomnia and poor sleep caused by the pain.

Brain fog caused by poor sleep.

Also worth finding out whether you have sleep apnea because again, poor quality sleep wound explain a lot of your problems.

arewethereyetmum78 · Today 22:56

I was diagnosed with fibromyalgia 2 years ago after suffering fatigue, unrefreshing sleep, chronic pain including muscle pain in legs etc and chronic shoulder, neck and back pain along with headaches, sore jaw etc. I have recently started meds for anxiety after suffering with this for years and my pains have all but disappeared. I am now putting the pain down to chronic stress and anxiety which basically caused me to tense my muscles and clench my jaw constantly.

Could yours be caused by anxiety/stress?

Doggodoggo · Today 23:52

I have very similar symptoms to you and like a PP said they nearly all went away when I started medication for anxiety. I still get a lot of twitching and muscle tension/cramps/tightness but it goes away when Im relaxed.

The worst time was when I was constantly searching for a diagnosis to explain everything. I ended up with really bad health anxiety. I felt like a diagnosis would be like a magic pill that would solve everything. I was convinced it couldn't be "just" anxiety and stress and there was something seriously wrong with me. But stress and anxiety are really powerful and create real physical symptoms.

I had back pain, hip pain, tingling in shoulders and feet, TMJ, ocular migraines, bloating, insomnia, light sensitivity, tinnitus, kept forgetting things, couldn't find the right words, constant calf twitching and cramps, other muscle twitches that would last weeks in random places eg a shoulder muscle or stomach muscle, sinus pain and pressure, internal vibrations, very weird and vivid dreams. There's probably more but thats all I can remember now. I had every kind of test you can imagine and never found anything wrong.

Sertraline 50mg has worked amazingly well for me and 90% of these symptoms have either gone or massively reduced.

PickAChew · Today 23:57

youalright · Today 21:52

Amitriptyline is an anti depressant

It blocks nerve pain in very low doses and helps with the sleep issues that can result from it. That is probably the most common reason it's prescribed, these days.

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