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.

Nobody is saying the pain or symptoms aren't real. I absolutely believe anyone 100% who says they are in pain or struggle with basic tasks due to exhaustion, brain fog etc. I also believe there is a reason behind it. What that reason is will not always be easily found and not all drs have the time or willingness to find the cause. Patients want answers they want a diagnosis they don't want to be going back every other week and neither does the dr. once they have a diagnosis its an answer and they go away. I know 2 people with fibromyalgia one changed diet, spent more time outside and started going to the gym and are completely fine now. The other took to her bed and has barely moved since this was years ago and then wonders why she feels so crap all the time and everything hurts. Deconditioning is very real.

This is a brilliant summary in my opinion, as a healthcare professional who treats people with various forms of persistent pain.

in my opinion it is unusual to meet someone with a fibromyalgia diagnosis, or indeed any form of persistent pain outside of an obvious physical cause , who hasn’t had some form of psychological trauma or intense stress - history of abuse, road accidents, massive caring load (ie single parent to child(ren) with additional needs +/- elderly parents), bereavements, money issues or even a fairly standard physical injury (such as a fractured wrist) that was caused in a way that has left psychological trauma (an assault or even a nasty fall).

Mental health comes from our brain, which is a physical part of our body, you can’t seperate mental and physical health. There’s plenty that still isn’t understood about pain, but it has been shown that a persons beliefs and past experiences can have a huge impact on their physical experience of pain. It doesn’t mean the pain is not real - it means the neurological system is working overtime and sending inappropriate pain messages to the conscious brain. The pain is not indicative of an acute physical injury, but of a nervous system that is telling the brain there is something physically wrong when there isn’t. But the pain is still there.

managing the pain should be done using a multipronged approach which can include medication, activity modification, pacing, and psychological therapies (CBT has been shown to be effective for example).

That being said, I do think the fibromyalgia diagnosis is being applied too liberally by some GPs because they do not have time to properly assess what’s actually going on for someone, which is unhelpful and limiting.

Lanzoprazole will interfere with b12 absorption too and lead to other nutritional defecits. We did everything we could to get my husband off it last year and it was a success. Increased stomach acid = no more reflux. Or minimal when he stops his regime which usually coincides with stressful times.

It sounds like you're quite tuned in to your health so I would recommend investigating.

I've had all these symptoms at different points in my life and it's only after 2 years of therapy that most of them have resolved aside from migraine, which is mainly hormonal for me anyway. Chronic stress from adverse childhood experiences can cause all these things, so maybe worth trying if you haven't already.

What is your diet like?
Are you eating plenty of fruit and vegetables and very little ready-made, packaged stuff?
Are you drinking enough water?
Is your bed comfortable?
Can you find a good reflexology practitioner - someone with years of experience- a few sessions could help.

I'm autistic and hyper mobile and had symptoms identical to yours. The GP and chiro I was seeing both suggested a potential diagnosis of fibromyalgia. At the time I was depressed, sedentary, spent too much sitting, had poor posture, was relatively weak and my diet was poor. I started strength training and cleaned my diet up and although I still suffer from anxiety at times (I'm also on an antidepressant that suits me) I'm a completely different person and symptom free. Tou may well have fibromyalgia BUT it is definitely worth having a look at your lifestyle etc and making changes as a first resort.

A lot of the times it's due to thyroid problems. Get your thyroid checked

Consider if you could have Ehlers Danlos. This could include hypermobility, gut issues, poor sleep patterns, aches and pains around joints, lack of an arch to your feet, velvety skin that bruises easily, sometimes a pinkish tinge to your eyelids, looking younger than your age, low blood pressure, headaches connected to joint pain and poor sleep, requiring more anesthesia than usual.

I have a condition called psoriatic arthritis which is treated by biologic injections and anti inflammatories. I still had a different type of pain, back of head, neck, shooting pains in arms and/or legs, collar bone. My rheumy said that’s fibro, it was weird to find these siffeeent levels of pain, first I started HRT before any diagnoses, that helped but was very slight, I was still in agony in my whole body, I including joints. Biologics helped the joint pains somewhat but still had the third layer of pain … fibromyalgia pain.
my self support was to take amitriptyline which GP can prescribe to help not wake with pain in the night and end up, after years of this sleep problem, helping with the chronic fatigue. I was off work with sickness, and literally for 8 months I did very little, had most days resting on the sofa, watching tv, reading etc … now I’m able to swim a little whic really helps, but the fatigue can still be crippling. I am older than you (54) so won’t have as much energy anyway, but I still have days where I feel I’m walking through treacle. I’ve thankfully been approved for ill health retirement

Andersson and his colleagues harvested blood from 44 people with fibromyalgia and injected purified antibodies from each of them into different mice. The mice rapidly became more sensitive to pressure and cold, and displayed reduced grip strength in their paws. Animals injected with antibodies from healthy people were unaffected.

Prof Camilla Svensson from the Karolinska Institute in Sweden, who was also involved in the study, said: “Antibodies from people with fibromyalgia living in two different countries, the UK and Sweden, gave similar results, which adds enormous strength to our findings.”

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

Yes I’m an HCP so understand the ins and outs more than most. Unfortunately underlying health conditions that require meds mean that reflux is a side effect rather than physiological.

I have an underlying complex immune condition which has had a background effect on my health for most of my adult life. There is no name for it, but I’m more likely to react to certain drugs so have to be monitored closely when starting new ones. I slipped up recently when I trapped a nerve in my neck. I took diclofenac and my liver has reacted. I’ve taken it before, but probably not continuously.

For me fibro is just another side effect so I have never looked for a diagnosis. By trial and error I’ve found a balance. Taking antihistamines daily helps immensely. Unfortunately I’m currently taking hormone blockers for breast cancer which amplifies symptoms. Hopefully I can come off it later this year and the symptoms will reduce.

Since it is now becoming clearer that auto immunity may be a cause it may well be easier to work out how to treat fibro. I don’t think it is a disease in itself but a common symptom of a variety of as yet auto immune conditions.

@peacefulpace
Do you not think the traumatic event of being widowed has psychologically contributed to your decline in health? Several have mentioned this factor, it’s common in elderly ppl; a major event triggering a decline in health.

@Crwysmam

I can see it's a delicate and probably frustrating balance.

No, I mean the 2021 study by Goebel’s. It’s failed to be replicated a number of times.

Going to the same uni doesn’t give you authority on a matter. Weird statement to make. I went to university to don’t you know 🙄

Your response absolutely explains why fibromyalgia is a lazy and dangerous diagnosis.

This was what my mum was diagnosed with.... Until her congenital heart valve defect was found. Which didn't happen until she was in heart failure. With her dying at 56. Fibromyalgia is not real. Fibromyalgia is what doctors say when they think there's nothing wrong. Conversion and functional disorders are similar. And I've seen patients have very serious conditions masked because assumptions are made due to them having traumatic backgrounds and psychological problems.

Yes, it was almost certainly the instigating factor. There are a few with FMS; physical trauma, emotional trauma or following the post-viral phase of an infection. There are some interesting studies going on now which are looking at how similar FMS and Long Covid are. It's common for FMS patients to have had the Epstein-Barr Virus at one point or another, knowlingly or not. Mine started directly after a couple of nasty viruses including Covid, and had my symptons resolved I'd have almost certainly been diagnosed with Long Covid.

Unfortunately addressing the initial cause doesn't make the FMS go away. As a result of my bereavement being my trigger event, along with the added stresses of having nursed a most beloved husband through terminal cancer in his late 40s, becoming a single mother to primary school children with their own health concerns, while commuting and working full time in a mentally demanding and pretty high level job. The guy who diagnosed me also referred me to a pain psychologist to unpick this, which has helped me cope with a dramatic change in life circumstances, but won't cure it.

Six years later though I'll never return to my career, walk with a cane, and I'm still mostly housebound. But it's been absolutely lovely to be lumped in with the poster whose sister was just fat, and the cousin with health anxiety.

For those who are geniunely interested, or god help you, looking at a diagnosis yourself, there's more about the link between trauma and FMS in this video. What is fibromyalgia?

That's the one, thank you.

I tend to agree with your last paragraph, that would explain a lot about why it's so hard to diagnose and treat and almost never appears without comorbidities.

Very best of luck with your cancer 🙏