Fibromyalgia - be honest.

[Hellovation]

I think I’m going to be diagnosed with fibromyalgia.

I had never heard of it, until the neurologist and GP both mentioned it.

Having now mentioned this to a few people and their reaction leaving me confused, some internet searches lead me to believe it is widely believed to be a non diagnosis and simply something in one’s head or a ‘lazy diagnosis’ because doctors are at a loss.

I was heartened to think I might have a diagnosis and understanding and way forward to get better and live my life but now I feel so sad.

Be absolutely honest- what do you think of fibromyalgia?

I read your post as suggesting that they were nostalgic for a time they were cherished because they were ill, and subconsciously try and replicate it.

The women I know had very different experiences. The opposite, really. I would say neglect is more common than anything else.
One became the household skivvy when her mum left.

If I were to say there was a psychological element to it, I’d look at neglect. But I don’t think it’s psychological. It’s a physiological fault, bad wiring, caused by toxic stress/trauma/burn out/lack of self care.

What treatment did you get. I am asking as daily I take a shed load of meds and feel about 85 rather than my real age. I am so pleased that you are doing so well and would love that for myself. Any advice tips gratefully received.

I completely agree with you.

I was getting at that poster because feminism and sexism always comes into it "what about the father?" That's what always gets trotted out.

But I couldn't agree with you more about 'parent blaming '. At the end of the day parents are just Humans, trying to do their best (mostly).

If I applied todays standards to my parents parenting, I'd be advised to go 'no contact '. Yes I was smacked, called names and some of the way my parents dealt with my teenage angst was really not very 'modern'. But they were more 'ignorant' of the psychology of children's development then. I bloody well knew I was loved and my mum did so many utterly wonderful things for us, she was and is the very best mum she can be. She has limitations and can't always be what I needed her to be back then. But I accepted her limitations as a human. People can't be what we always need or want them to be. Sometimes their best is all they have to give, and it might be less than we expect. But it's still the best they have. It's about intention mostly.when I stopped listening to counsellors and googling stuff - I came to that conclusion all by myself and my god- it's freeing. I now have a wonderful relationship with my dear mum, because despite her shortcomings in my younger years, I accept her and her love, the way it's given.

Too many people except their parents of previous generations to have been 'perfect' by modern standards. It's unrealistic and damaging.

Well.... It's statistical evidence. I'm sorry if you find that 'not ok '

It's very '2025' to not say facts because of hurty feelz. But , it's all there to look up for yourself. Have a quick Google 'typical demographic of someone diagnosed with fibromyalgia '

Lots of diseases have a demographic. Age at diagnosis, sex, ethnic background, etc.

Yes absolutely
That's my point.

The "typical" fibromyalgia sufferer is a middle aged woman with concomitant mental health diagnoses or other functional syndromes such as CFS and without further education " (the initial poster asked for that info)

If you said , by statistics, who is a politician? The answer would be "a middle aged affluent white male". Doesn't mean Kemi Badenoch doesn't exist does it ? (Although she is indeed affluent 😁)

Some posters (ironically the shouty ones with fibromyalgia on here ) can't seem to grasp facts and statistics, just because they find them offensive

@springintoaction321 you are so rude. The OP asked for honest opinions and I am giving mine. You have no idea what my clinical background is. Regardless, I don’t have to ‘butt out’ of an open discussions on a public forum on your say so because you don’t like what I’ve got to say.

The NHS is clear that Fibromyalgia is often triggered by an event that causes emotional and psycholgoical stress and talking therapy is a first line treatment for the condition.

Right! This is the problem isn't it ? Facts and statistics are found offensive so we must shut up and erase them. That's going well for modern times at present isn't it ? 🫣

Your first paragraph really resonated with me. I was diagnosed with it 10 years ago by my rheumatology consultant. She said people with rheumatoid arthritis were more prone to having fibromyalgia. I know exactly what you mean about the rib pain and feeling like you're wearing a heavy suit of armour. Some days I feel like my arms and legs are made of lead.

If I was facing fibromyalgia - as you asked for honest opinion - I would cut out all wheat and then I'd try maybe a low histamine diet. Possibly also do fasting and maybe some ketosis. Stick to an anti inflammatory diet. My gut feeling is that would eliminate a lot of symptoms. Limit alcohol. Avoid stress. Avoid pollution. Gradually build exercise up e.g. walking up to swimming etc. One day active one day rest. I'd then see what symptoms were left. My firm belief is that it would reduce symptoms.

I have a serious condition, have always been prone to migraine, very sensitive to noise, take an immune suppressant for something else and those kinds of things help me.

😂🤣😂🤣😂
I'm sorry but this comes across as quite patronising - particularly your "firm belief".

I tried a wheat free diet to see if it improved fibromyalgia. It didn't make a scrap of difference (although it reduced asthma and IBS symptoms to the point where I have come off daily medication so I continue it)

One day active, one day rest? If only all of life's demands fell into such a neat pattern. For me it is more one active day requires 3 days of rest/very slow activity but there are are so often weeks when you just have to be active more days in a row and then you end up zombified. As for actual exercise, I can get tired doing the tiniest gentlest bit of somatic yoga! Progressive graduated exercise has been discontinued as a recommended treatment for fibromyalgia now.

Avoiding stress seems a wonderful idea until a parent gets diagnosed with dementia or has a fall and breaks a hip or you get a callback from your routine breast screening to go for a biopsy or a close friend gets really ill with a life limiting condition or ... ( all of these have happened to me and all but one have happened in the last 3 months!)

Avoiding pollution is easier said than done depending on where you live. I bet there are a reasonable proportion of fibromyalgia sufferers living in the Lake District or rural Gloucestershire anyway.

Latest research indicates that fibromyalgia is some kind of auto immune condition. I think treatments for it will be found as investigations continue down this avenue.

This article is really interesting. Especially this bit:

The researchers injected mice with antibodies from people living with FMS and observed that the mice rapidly developed an increased sensitivity to pressure and cold, as well as displaying reduced movement grip strength. In contrast, mice that were injected with antibodies from healthy people were unaffected, demonstrating that patient antibodies cause, or at least are a major contributor to the disease.

Furthermore, the mice injected with fibromyalgia antibodies recovered after a few weeks, when antibodies had been cleared from their system. This finding strongly suggests that therapies which reduce antibody levels in patients are likely to be effective treatments.

Can people please read this, how is this research result possible if it is a mental health problem

I think if this thread was about horrible stereotypes of any other group of people it would be removed but disability and illness seems fair game these days.

Please try to remember how you are making people feel, whatever you believe the cause to be we are still human beings

The scariest post are the ones from medical professionals with these views when the research is going in the autoimmune direction

@Hellovation
It's difficult when first diagnosed. I was having a really bad night last night with a separate pain condition and ready the opinions of some people is horrible
But, at the end of the day it doesn't matter what any of them think, they will never be in your position and are very lucky,
The only thing that matters is that you know the pain is real, it sounds like you have a lovely family, hold onto that it will keep you going.
It is different for everyone, just try to stay as healthy in general as you can. I do think cutting out gluten helps and I'm dairy free too.
A really good website for latest research is Health Rising by Cort Johnson.
Sending hugs, DM me if you need to xx

@Hellovation please also check your blood test results yourself to see if your B12 levels, iron levels, vitamin D levels and thyroid have been properly checked.

Ah well. Never been one to follow a trend. I was in my 20s, no MH issues or other conditions, first class degree and master's.

‘There are several recent rodent studies that have purported to show that sera from individuals with FM can cause hyperalgesia or dorsal horn changes in rodents, but these studies are not likely to be helpful in determining whether FM is an autoimmune disease 32]. Very few acknowledged autoimmune disorders can be reproduced in animals simply by giving rodents sera or plasma from humans with that disease, and there are no valid animal models of FM 56]. In light of this it is difficult to see how animal studies are going to counter the overwhelming clinical/human evidence that FM is not an autoimmune disease’

Is fibromyalgia an autoimmune disorder? Clauw et al Autoimmunity Reviews
Volume 23, Issue 1, January 2024, 103424

One thing I have long suspected and this thread seems to support is that a lot of the symptoms that get this label have an autoimmune element. A lot of the things I find helpful are now being recognised by mainstream medicine, like cold (or at least cool) water swimming and an antinflammatory diet. A few years ago this was all dismissed as pseudoscience and woo by all but the most open-minded practioners. Now the Mayo clinic is making diet reccomendations to reduce inflammation and oxidative stress. And I know I have autoimmune issues - hyperthyroidism and allergies for example. It makes sense that women suffer with autoimmune issues more because of our stronger immune systems. I think I might be "lucky" in that because mine make me underweight rather than overweight doctors stereotype me less - medical fatphobia is very as is medical misogyny. I have had it implied that I was drug seeking - nope. All I take for pain is bog standard paracetamol and ibuprofren, hardly trying to get high, and I'm extremely wary about painkillers because my uncle was addicted. I took myself off codeine, because I didn't like how much I was thinking about it between doses. I could feel the 'red flag, this drug is too habit forming' in myself, so I stopped.

Sorry to hear this op. All I can say is listen to your body. Stop when it needs rest. Don’t feel guilty
and prepare yourself for tons of ( not very helpful) advice
also whenever you go to the GP be prepared for everything to be blamed on your fibro

I have another autoimmune condition and I avoid the doctors as every time I go they blame it on that
I could turn up with a broken leg and it would ‘be because of the autoimmune condition I have. Very frustrating

https://pmc.ncbi.nlm.nih.gov/articles/PMC8245181/#:~:text=Mice%20treated%20with%20IgG%20from,to%20cold%20and%20mechanical%20stimulation
For the naysayers. Also I read there will be a blood test in the near future to diagnose fibromyalgia.

I started developing intermittent symptoms of arthritis at 15, after a nasty bout of glandular fever. A few weeks after my 22nd birthday I developed flu like symptoms and developed pain all over and struggled to move. I was diagnosed with fibromyalgia a few months later. My bloods were normal bar a bad vitamin D deficiency and high inflammatory markers. I was size 10, a recent graduate and reasonably active. No history of mental health issues. I'd just started a new job and was very happy when my symptoms began.

I developed psoriasis at 23 and symptoms of psoriatic arthritis alongside. Bloods and scans still negative, except for the high inflammatory markers.

I was diagnosed with Ehlers Danlos at 26 and eventually diagnosed with psoriatic arthritis at 31.

I've moved around a lot and seen many rheumatologists since 2010. All of them say fibromyalgia is real.

IME a lot of people who are diagnosed with fibromyalgia are later diagnosed with commonly comorbid conditions like RA, PsA, lupus, sjogrens etc.

No need to laugh at me - OP asked for opinions.

"although it reduced asthma and IBS symptoms to the point where I have come off daily medication so I continue it" I'm not an expert in FM symptoms but this sounds like a good thing as it's reduced the load on you.

I agree you have to define your own definition of active and exercise. I would define walking as being active. 4k-7k steps a day for me would be fine as being active, and a 2.5k steps day would be a rest day. Trying to list some weights 3 times a week even if just 5kg bells. Somatic yoga or yoga generally is pretty challenging for me on an immune suppressant - it releases too much and makes me tired too. I prefer massage and just have one every three months instead. Cardio is kind of the important one - and the most exhausting - not sure I've cracked it but in the past I've done a once a week swim when I know I've got two low key days ahead. It does involve self limiting activities a lot. Looking for times when I can move less. Taking taxis at times.

Stress really is the biggest provoker of symptoms for me on an immune suppressant (plus monthly cycle). Daily I just try and simplify and care less about less important things. I don't know how you cope with the big stressors - I've had those too - other than practising acceptance, priorising self care in those difficult times even if just a bath at the end of a day etc. I'm sorry lots of those have happened to you recently.

I now go into work earlier to avoid walking through traffic and it does help. Also keep an eye on poor air quality days and I try to go outside less on those. Sounds crazy but it's a massive issue in UK and The government needs to take more action on it. I take vitamin D all year round now as its all been shown to be Beneficial for my condition. Also keep a good balance of protein carb and healthy fat and try and maintain my muscle mass. Sufficient daily calorie intake c2000 a day. Occasional days I might give my digestion a break and just do soup and veggies. I'm okay with wheat now as long as not ultra processed so I stick to pasta and breads like sourdough and or ones that are just extra virgin olive oil and flour. Take a daily antihistamine again helps reduce load on my immune system.
Making use of support groups and any helplines.

I'm sorry I came across as patronising. I lived with a serious condition with 15 years before I got a diagnosis, just assuming the symptoms were part of getting older and making adjustments that made my life smaller. Luckily I got a medication that stopped it before it became life limiting. FM definitely requires more research and treatments.

Some days I inexplicably get migraines and feel like I'm coming down with something - much less than you have with FM I'm sure - and it can be 3-4 days until a migraine clears and 2 weeks until the General tiredness goes. I just have to scale back activity, cancel things, and wait for it to pass, spend a weekend in bed etc. and just do the basics.

If it is an autoimmune condition what would treatment be? An immune suppressant?

I take one for something else and it's not without side effects. Even at very low dose - dry skin, ulcers, more colds, dry eyes, migraine, body aches. Its like a general lower resilience to stress is how I describe being on it. Zero tolerance for negative bull shit has become my coping strategy on it.

Hurty feelz ? please do not patronise me, i'm a 51 year old grandmother 🤨

I have already explained that I agree that Fibromyalgia is linked to trauma and an overstimulated nervous system but people are far more complex than that. Trying to fit people into boxes does help.