Fibromyalgia: the body’s response to a single source of inflammation?

[WonderingAboutFibromyalgia]

I was diagnosed with fibromyalgia about a year ago after 18 months of chronic pain with really nasty flare ups involving shoulder, jaw, hips, knees, skin, genitals (ouch!), eyes, lungs. Systems across the whole body.

The pain has been life changing and been made worse by the attitude of my gp ‘oh it’s her again’ etc.

At the same time I was told I had osteoarthritis in one hip which was a particular source of pain- much worse than other joints.

At long last I have had a orthopaedics appointment and a diagnostic steroid injection in the hip joint which has revealed very clearly- yes, there’s a big problem in that hip. I will need a hip replacement.

The thing is- since having the injection in the hip (and confined to the joint), I have not just lost the hip joint pain. (I appreciate this pain relief won’t last for more than a couple of weeks.) Everything else has died down too! I feel completely different. All the symptoms that were classified as fibromyalgia have dampened or gone. I would not normally expect one pain free day - I have had over a week of them.

So my question is: to what extent might the symptoms grouped as fibromyalgia be the body’s response (inflammation causing multi-system problems) to ONE undiagnosed, underlying source of inflammation and pain in the body? (In my case, my hip?) Is it possible many people are suffering unnecessarily because they are classified as having fibromyalgia (and thus ime written off by unsympathetic doctors) when what is really needed is a hunt for one joint or organ that is the real problem? So that can be dealt with as a first step?

I should clarify that I am not in the slightest denying the terrible suffering caused by fibromyalgia. People diagnosed with it - like me- are in awful pain. It devastates lives. I’m just wondering if in some cases the diagnosis reflects uninterested doctors not willing to look for a ‘source’ of inflammation and pain in one particular body part. And wondered if this was a thing, or just me looking for answers where none really exist.

If you have ever attended a pain clinic, the brain can get stuck in pain. Reducing pain in one area can feedback to the brain and dampen down its response to pain I general. It can switch off its hyper alert mode.

I think it’s entirely possible- pain signals to the brain cause a chemical cascade of pain and inflammation mediators through the bloodstream, and that’s system wide. So yeah, if there’s one major source of that and those signals massively drop, I can see that levels across the board will drop too. Plus if you’re not in loads of pain you’ll carry yourself differently, which will reduce the knock on effect to other joints and muscles.

Would be interesting to know how many people diagnosed with Fibromyalgia have histories of one major source of pain originally.

Those are interesting thoughts. It makes me feel hopeful for the first time in a long while- and also angry because I wonder how many people (perhaps in most cases women) are spending years suffering ‘fibromyalgia’ because of one problem, say osteoarthritis in one joint, that is written off because they are too young, or it seems mild on scans.

All of these things like CF, Fibromyalgia, chronic pain can often be linked back to difficult childhoods or trauma.

Read The Body keeps the Score.

My fibromyalgia started when my bowel ruptured due to undiagnosed cancer. I needed emergency surgery at midnight I woke up with a ilestomy . Diagnosed with Cancer a couple of weeks later. That whole episode in my life caused the most pain I had up to that point ever experienced coupled with a huge sense of shock. My fibromyalgia developed almost immediately afterwards.

This is my experience..when I had osteoporosis in my hips I also had a lot of general body pain. I would call them flare ups because they would come and go. Also I would attribute something like a costa coffee cake triggering them. And they could last a week at a time before subsiding. When I flared up I had pain all over the body, I knew it was really bad when my finger joints hurt and my teeth even throbbed. In addition to the hip pain I had regular knee pain and not to mention the chronic back pain from (what I found out) was a my hip disintegrating.

Two hip replacements later and that hasn’t happened to me since the second one.

Is it possibly because your nervous system has downregulated as your hip is no longer inflamed & keeping it in fight-or-flight mode?

I do think there’s a massively under researched association between autoimmune and other chronic inflammatory conditions (eg endometriosis) and struggles with nervous system regulation. I am very much in this camp with endo and a history of childhood trauma.

I was diagnosed with fibromyalgia many years ago but I believe it was a misdiagnosis. I was subsequently diagnosed with a couple of autoimmune conditions and the right medication for them, removed the symptoms attributed to fibromyalgia.

I don’t know what the diagnostic criteria is now but for me it was an elimination of other conditions equated to me having fibromyalgia. Clearly not everything was correctly identified and eliminated for me but I suppose that is the risk of a condition that doesn’t (or didn’t) have a definite marker that couldn’t mean the pain and fatigue were caused by anything else.

Mine started after a ruptured brain aneurysm.

I sometimes have to have steroids due to a health condition (the steroids are not to manage pain) but i feel fabulous for a while afterwards (and starving!) and my body feels pain free. My condition is incurable and degenerative so its not “getting better” but i do love those steroids while the effects last. Unfortunately i only get them twice a year though. I’d wait and see how you are in the longer term before deducing anything.

and often they are not and cannot ....
genes implicated too https://www.frontiersin.org/journals/genetics/articles/10.3389/fgene.2025.1535541/full

Diagnosed in my late teens after having glandular fever aged 12. Have had numerous scans, xrays, mri etc but nothing showed. Tested for MS etc, nothing showed. Definitely developed after the virus. I'm in my mid 50's now so over 40 years of pain, etc. Life changing but not in a good way.

This is a VERY Interesting bit of research and some great advice about the link between the nervous system and conditions such a CFS and fibro.

it’s free - make sure you watch the video and download the workbook:

www.plymouthhospitals.nhs.uk/body-reprogramming/

CF? As in cystic fibrosis? That’s entirely genetic and evident before any childhood trauma 👍🏻

I would think it's different from everyone
do you not have good days and bad days? they do say it's from sort if trauma the body has suffered. for me though I think I have had it all my life. I remember my mother bringing me to the docs as a teen as complaining of aches and pains. was told it's growing pains. am with my husband over 20 years and he has always remembered me complaining of pain especially at night and constantly being tired. like extreme fatigue. I was also diagnosed with endometriosis and andimoyouse (sorry can't spell it ) later on in my life many surgeries to correct that. but still pain. covid was an eye opener as working from home etc I realised how less pain I was and how less tired was. got worse then as asked back into the office. After many trips to doc finally diagnosed ( I thought it was arithis as literally crippled I was) 2 years ago. I am allowed to wfh 4 days a week and I really notice it the day after (long commute and driving exasperated it ) stress brings it on for me plus socialising. like example last Sunday neighbour called in then went out for lunch then sis called with kids- all normal things for people to do and should not affect you but for me it drained me. I had flare ups next 2 days before got right. rest for me is very very important as well as heat. I have adopted the spoon termology and notice now when I need to rest. its very very hard though and I am struggling with the impact it has on my life as well as my husbands. we can't be as busy in life as we like
I try to do excerise and get out walking etc. but it is hard
you can recover from it but everyone is different but it can also come back
like you I also felt like a pest with going ti my doc (similar with my endo diagnosed took 7 years ) was told sure your just a naturally tired person do more exercise blah blah.

If a hip isn’t moving properly, it can throw off your pelvis which throws off your jaw (or down to your feet instead. Your muscles tighten up as a response which can irritate nerves, leading to pain in other areas (genitals/eyes).

Just an alternative view to consider. Orthopaedics tend to focus on bones, but physios/osteopaths tend to look at the body as a whole.

Chronic fatigue

It’s an illness of the body over reacting, imo. Sometimes there’s a specific source that it’s over reacting to.

Sometimes there isn’t a particular source it’s over reacting to, or indeed the condition continues after the source has been cured.

I don’t have a particular joint that needs replacing, unfortunately. I haven’t given up on finding something to cure though!

This is really interesting. Something has come out of the Horneman centre in USA for Cjronic Fatigue about this.

Ive also been working with a somatic practitioner and have made massive steps forward from being bedbound.. She follows the same sort of thing. It’s new information that is just coming out of the medical community.

Over sensitive nervous systems.

Yes, but a sensitive nervous system is also implicated.

Its not new. John Sarno wrote about it in the 1980s I think, but the medical profession has resisted. In large part due to the US pharmaceutical industry and research trials being funded by the people who make millions making drugs. Understanding that it's a mind/body/nervous system issue doesnt make as much money.

Have a read of Pain Free You by Dan Buglio. He also has a YouTube channel with a hundred or so success stories of people whose chronic symptoms have been healed using his approach. In essence, its about the brain falsely perceiving danger.

Raelan Agle is another one. Lots of people recovered from Long Covid/Cjronic Fatigue/Fibromyalgia on there.

IMO - which is based on nothing but my experience (of many illnesses that I've been misdiagnosed with/gaslit about) and hearing stories of other's experiences, like yours, my theory of fibromyalgia is that it's pain in the body (along with other symptoms) that the drs have no clue why it's happening because they dont have the time/money to fully investigate. So once they've ruled out what they are told to rule out, they give this diagnosis to pacify patients.

Your body just doesn't one day wake up and think - oh I'll be in pain today because I fancy it. There has to be something else going on which causes the pain.

As I said, this is just my opinion though.

Are you hypermobile/ double jointed/ bendy?

Pain management services (nhs) do take the approach people have described, of considering the oversensitised nervous system and factors which can ‘wind it up’ - those can include stress /distress but also overdoing activity, illness, disrupted sleep amongst others. These services tend to have physios, psychologists and occupational therapists to address these contributory factors. Medics are also part of the team as medication & interventions like injections can be a useful part of pain management for some people, though injections give only short term relief, and meds tend to at best ‘take the edge off’ rather than get rid of pain completely. This is a great website that summarises the neuroscience behind these approaches: www.retrainpain.org
Sarno imo oversimplifies pain as only being psychological whereas the more recent research points to it being a result of multiple factors causing the nervous system to respond as if the body is being damaged (ie causing / amplifying pain, inflammation etc)

The main issue with accessing these services in the nhs is that they’re not commissioned equally across the uk and even where they do exist, GPs arent always aware they are there or who they are appropriate for..
GIRFT (nhs England) are doing a project at the moment to map pain management services in the uk as a first step to better access to them.