To think I might have fibromyalgia?

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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.

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

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

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

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.

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.

It's also used as a pain killer.

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.

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.

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?

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.

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.

My sil was diagnosed with fibromyalgia, in reality it was anxiety and depression. She had constant and I mean constant visits to the doctor and hospital.

neck, shoulder, hips, knees back, everything would last a few months , go through investigation, then something else would take over. Every time I spoke to her there was a litany of the pain she was in and her hospital appts. Nothing was found then they said fibromyalgia,

when she was put on anti depressants and anxiety medication, it stopped.

health anxiety and the mind are very powerful things.

op, your list, muscle tightness, poor sleep etc, makes me think this is health anxiety at its root, and you need to get on top of the anxiety.

I wouldn’t let anyone give me a diagnosis of fibromyalgia. I’m an ex nurse and I’ve heard doctors refer to it as ‘shut and go away’ and a ‘dust bin diagnosis’. I wouldn’t want that diagnosis on my record as I think they would just dismiss anything I ever said after that as hysteria. The level of misogyny In medicine is insane.

Are you overweight?

Doubtful. Fibromyalgia is a fob off diagnosis, i was told I had it then a few years later a new GP actually bothered to read my entire notes and worked out I had ehlers Danlos syndrome sent me for genetic tests and came back as EDS.
a lot of fibromyalgia is health anxiety.

It's used for all sorts, pain/insomnia as well as an antidepressant.

Yes both symptoms of dust mite allergy. Get rid of carpets/cloth in the room. Also, get a blood test to check.

Its also used for depression and anxiety

Lots of people say that fibromyalgia is a disease of exclusion. That's not true - while there is no test for it, it's a clinical diagnosis based on certain positive findings in history or examination. There used to be criteria referencing tender points, but that is out of date now, and the American College of Rheumatology diagnostic criteria are:
Widespread pain (there is a scoring system in the link I will give) of at least 7
Somatic symptoms (again, there is a scoring system)

Royal College of Physicians guideline - this can be used by anyone including GPs, physio etc, and if you are wondering about it, you could do the worksheet that is in there.

Unfortunately, people have the idea that if you can't do a blood test or scan, that it isn't real. However these people have no issues accepting that migraines or headaches don't have a blood test or a scan, but no-one would say that these aren't real.

That's what an antidepressant does, yes.

But for nerve pain the dose is typically something like 10-20 mg while as an antidepressant it's more like 80mg and upwards. It's a first generation tricyclic and has some pretty strong side effects at psychoactive doses - the ones that are useful to those of us with chronic pain at low dose - so is rarely used for depression.

It is an anti-depressant but is also used for nerve pain.

I think you should have put anxiety at the top of your list as it’s likely that a psychological cause underpins most of your issues.

Working about fibromyalgia being real or not is unhelpful. I’m definitely in the camp who believes fibromyalgia and other similar functional disorders and primarily psychological in origin but clearly the symptoms are experienced and ‘real’. And there could also be a ‘physical’ aspect to these conditions, like nerves misfiring etc, but that could still be down to the psychopathology causing this misfiring.

There are a lot of unhelpful and unkind posts on here. Fibromyalgia is a real diagnosis, its a chronic and painful condition, and the dismissive comments on here are shameful. I would not wish this condition on anyone.