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Fibromyalgia Action UK
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What are people's theories of what fibromyalgia is?

Hi there,

As the medical world seem miffed by what causes fibromyalgia and how to heal it. I was wondering what my fellow fibromyalgia suffers thought it could be and how they are going about healing it? I love to learn from other people's experiences and advice.

My theory atm is that it's perhaps trapped trauma, so I'm looking into how to heal trauma.

What do other people think? And what methods are they using and help?

Thanks xxx

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Well I'm no expert and this is my personal opinion, built on what I have managed to read so far and there are lots of theories about it. I think it is auto immune. I think it may be proven at some point in the future and treated as such.

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Hi, I think trauma and perhaps auto immune system. My first signs of fibromyalgia were 5 yrs ago following a car crash in which I could have been killed.. Much worse recently, since I had breast cancer, so trauma to the body and the mind.

I am trying to heal myself by attending yoga twice weekly, tichi and chi gong and eating healthy. X

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I think it could be a combination between trauma, female hormones and a tendency towards autoimmune disease. I had suffered unknowingly from PTSD for years (I thought it was just anxiety & depression) and then I got Lupus. Then the Lupus went into remission (blood tests showed) but my pain levels stayed the same and I was diagnosed with Fibromyalgia. Then I realised I had PTSD and got treatment for it.

Also have endometriosis (finally just diagnosed) which has contributed to pain. And my other symptoms also flare up every month along with my cycle, so definitely connected.

It’s a complicated picture isn’t it?!

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Female hormones .. what’s my excuse then ??

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Lol x

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Lol I can only speak from personal experience ;)

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more than you know!

When i tried some Estrogen years back it changed it "Alot"

Yet when they put me on T over my pituitary tumour caused all sorts of problems

And hormones are all what we are they are us!

Like a car with the wrong engine oil in it it's not going far

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But I don’t have female hormones — I’m a man

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Same here but was something i'd worked out with lots of researching was only for a very short while it sort of resets the body so it thinks hey whats going on so has to do a check.

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What it did/does is like where you have a leak/weep on a pipe you think ok il do/look at it sometime!

But what the way i did it was it said/thought hey pants i'd better go sort it out now!

So it reaccessis your whole system rebalancing things so gets a chivvy on

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I often think that some trauma, overwork and long term stress seems to do something to our immune system and nervous system putting everything on high alert so our brains respond differently to pain. It is as though the pain trap door never shuts and is always propped open so we feel pain at a higher level.x

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I think its all trauma related which affects the immune system. In terms of healing it, I don't know. I'm convinced the way forward is stem cell treatment and perhaps gene therapy but again, it's all money to do this.

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It's an interesting idea that I subscribe to. I was recently given homeopathy for trauma, and it brought up memories of trauma for me. Though really difficult I have found with homeopathy I have a healing crisis and then things improve.

Trauma can be physical, mental, emotional or all. It's not easy to undo by yourself. But if feels like trapped energy which zaps your jest for life. Releasing that stagnant energy is healing.

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I think that it’s most likely an autoimmune disorder but I do believe that trauma whether physical or emotional has its part to play in kickstarting it! Mine started after losing my dad extremely suddenly due to a missed cancer diagnosis despite 3 monthly check ups to catch its return early. We had just four weeks from diagnosis to death and in that time I nursed him at home on my own. My choice and his wish. (I’m a trained nurse and he was my dad so it was never going to be any other way). 3 years on and I’m no closer to accepting he’s no longer here! My rheumatologist told me that he thinks that it is this trauma that initiated it but also that he leans towards it being autoimmune. I suppose we can only wait and see whilst science develops and hope that one day we all get answers as to why we have this vile condition.

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Bereavement can definitely kickstart it. I heard that from Prof. Davies who used to run the Fibro clinic at Guys Hospital. It can also be a combination of factors. Mine was a bad flu virus and bereavement. The bereavement happened three months before the flu.

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My situation sounds similar to yours in that I took care of my beloved Dad who had a sudden stage 4 prostate cancer diagnosis whereby he died in my arms(like you it is 13 years for me and not a day goes by where my heart does not ache for my Dad)- to my sweet mother having congestive heart failure for the next 2 years -then her death -to a stage 3 cancer diagnosis for myself a month later. So mental stress, physical trauma....all adds up why I now have fibromyalgia. My GP specializes in treating cancer survivors and she said that after that diagnosis and treatment she has seen many odd ailments present themselves. Too much turmoil and trauma on the body.

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Your post has really got me thinking...

When l was 14 my step father was terminally ill with cancer we lived in a remote part of Wales..l had the responsibility of caring for him at home with my Mother this including all personal stuff and also administering his morphine ...

I was traumatized with fear....

I won't go into anymore detail as it was to horrific but now you've mentioned it in your post maybe that was the start of it couple with following years of judo training taking lots of falls and car crashes too..

I am pleased it's now recognized after years of being faced with remarks from small minded minions claiming that Fybro is all in our minds..

Carol.

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I think it might be auto immune and is finally triggered by trauma. Looking back I can see I had signs of fibro as a child and teenager, though they weren't constant. After my partner died suddenly the fibro symptoms flared but I thought it was grief. A few years later the traumatic death of a friend followed by some very unpleasant consequences seemed to trigger the fibro permanently.

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I also believe it is autoimmune based bought on when the body has suffered physical and emotional stress.

I'd had a difficult time working full time, often away, in a bad atmosphere, managing the household and family and supporting an ill husband. I began to feel something was happening to my body but doctors couldn't identify it.

At 47 i spent 3 months watching my mum suffer horribly and then die. 6 months later i got a nasty virus and within a couple of months i was knocked out with fatigue and pain. I have recovered and remitted a few times.

I do think that once you've got it your body is over sensitive to even the slightest irritant.

I've managed to improve things considerably, but not cure, by tweaking my diet and taking golden linseeds everyday.

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Although trauma in life can have a big impact on aspects of health, I don't think it plays a significant role in Fibromyalgia. I say this and I could be talking nonsense but I think, if it where the case, numbers of Fibromyalgia sufferers would be massive Worldwide don't you think.

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I think maybe Trauma causes the weakest link in the chain to snap. Our weakest link is autoimmune disorders, others’ weakest link could be breast cancer, others’ mental health breakdown, etc., etc., The Trauma is what causes the autoimmune system to go into meltdown.

Thoughts?

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I completely agree. In my case in was mental health. I got sectioned 6 times in 2 years. The trauma of being manhandled by police, handcuffed for hours, pinned down, injected, locked up, weeks without being allowed outside, my parents not visiting etc....finally snapped something.

I think I've had fibromyalgia for years. Pain being throughout my life, after suffering child abuse and torture. I managed to dissociate from it though, almost trained by my Dad not to feel pain. It's like it took a huge event to awaken myself to and acknowledge completely the severe pain I was in..... give in to it. I had always put it down to accute anxiety/PTSDand muscle tension. However, I now know I was wrong. I've noticed now that I'm struggling to heal from minor things e.g cracked bits at the side of my lips for almost three months now. So I can see how my immune system is weak too.

How do you think your chain was snapped, so to speak? If you don't mind me asking.

Thanks for the response xxx

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That is just awful, I hope you are receiving the right support and treatment for the trauma you have suffered.

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Yes, I am, thank you. EDMR just now. Sometimes we have to suffer to admit there's something wrong. I had a big ego, so it took a lot to crack it open. Thanks for your message 😊 xxx

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Well, autoimmune is multifactorial, that's why I say In Fibromyalgia, trauma, I don't think it's a significant factor. I don't think trauma causes cells to become cancerous or a person to have lung disease. Whereas I think trauma can contribute to mental health and also can contribute to heart attack and stroke brought on by the long term stress, related to trauma suffered. There will be research to say there is a link and other research to refute it. Researcher's will lean their results to their own hypothesis.

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Arthritis connection

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Interesting. When I first 'got' fibro, before I was diagnosed 2 years later, I thought I had rheumatoid arthritis as three other relatives on mothers side had it, inc mother. No swollen joints though, and no positive rheumatoid factor test.

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Same here although did have one swollen joint even got methotrexate. Arthritis research are researching fibromyalgia to see if any connection

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Undertreated ( been hypo/ autoimmune thyroiditis for 13 years) or undiagnosed hypothyroidism...I am going down this route as particular pioneered by late Dr. Lowe ( using T3 rather than just levothyroxin) and got rid of seized up hips which last winter resulted in 24/7 on a sofa....still in pain and some stiffness in hands etc, but can walk most days which is better than the what seemed to be the future destined for a wheelchair. I had had very bad pain in shoulders/ neck for 35 years, knee and ankle problems for last 10 years, but got ‘fibro’ all over pain post sepsis/septic shock/ intensive care event and mega doses of antibiotics.

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Current research points towards a central nervous system issue, disordered pain processing and central sensitisation x

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Thank you for all your responses 😊

They have been interesting to read. I've learnt I've got to also work on building up my immune system and nervous system, as well as working on past trauma. Thank you for putting me in a better path, so to speak. A healthy diet, vitamin's, meditation and gentle exercise (somatics) are a part of my daily routine, but I can always do more. Tai chi was suggested, which would unblock trapped energy. Great idea. Also, more research into the immune & nervous system!! Yes, hormones too. I've noticed a difference around my time of the month, I've actually just started writing a diary because of it. Perhaps, adrenals as well, especially with the men?!

Thanks guys, have a lovely Sunday and hope you're all as well as can be.

Much love and gentle hugs xxx

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Try HAGGIS once or twice a week 😊 .good for vitamins (rich) minerals (zinc magnesium iron) and protein (liver heart)add potatoes (energy) once a week as high in salt

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I actually totally agree with you. I've got a few tins of haggis in the cupboard , and eat black pudding regularly. Food definitely heals!!! 😊 Plus I'm Scottish, so it's a given 😂😂😂

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P.s I would of loved to reply to you all individually, but my hands, arms and wrists wouldn't allow it. Sorry and thanks again for your informative posts xxx

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My theory is that it is CNS Lupus in infantile stage, and the antibodies responsible have not been identified yet/ current tests are unable to pick them up.

Something - infection, physical or mental stress or environment, activates the immune system to attack the pain-processing thalamus. It then misinterpretes signals from the nerves and sends the wrong message to the cerebral cortex. As a result, we get incorrect messages of pain, hunger, fatigue and malaise... These signals are then acted on by our hormones, etc, causing further 'confusion' to the system.

Or something like that...

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Thank you everyone xxx

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I suffered sexual abuse from 3 to 11. I had a two decade long marriage to an abuser.

I am convinced that abuse and internalised emotions has caused my fibro.

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I also had a serious head injury as an infant and a severe whiplash injury in my 20s

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Thanks for your perspective KasJas and sorry to read you've been through so much.

Big hugs xxx

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Thanks but all is great in my life now apart from fibro and AI issues. X

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Thank you xxx

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I’ve had endometriosis got full hysterectomy but it’s still a puzzle why have i got this debilitating disease Not everyone with a hysterectomy gets fibromyalgia x

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Hi,

I was diagnosed with fibromyalgia 10 years ago now, after suffering increasingly disabling symptoms since my teens. Three years ago, after trying various medications via my rheumatologist and nothing actually working. I fought my way to finding and seeing a professor of neurology,( a headache specialist to be specific), after thinking about my escalating symptoms and them all coming & pointing logically back to the brain.

I was then diagnosed with Chronic migraine disease,( a genetic inherited disorder of the brain). A disabling, essentially spectrum disorder of the central nervous system. Caused to worsen by stress, trauma, hormonal changes and many dietary and environmental factors.

As far as my neurologist is concerned, Fibromyalgia is essentially : MIGRAINE and the knowledge about MIGRAINE amongst Dr. goes back much further than the research on and into fibromyalgia.

After doing much research online myself, on both medical conditions, I know my Neurologist is right in his diagnosis and it's a shame I think, that headache specialists and rheumatologist never get together and talk at conferences about either condition or their own individual research.

Over the past three years I have tried many treatments,( both various meds & electrical), and they have had minimal and very slowly achieved benefits.

My sleeping problems haven't essentially been corrected through taking medication. Migraine can cause fatigue, gut pain and pain across many bodily distributions but essentially the pain and the problem is coming directly from the brain and not the autoimmune system or anywhere else, muscles etc.as many go on to suggest or theorise.

Treatments, medications for migraine are : antidepressants, anti epileptics, blood pressure tablets etc and Triptans. Cranial Botox is the next option after,(like me) trying more than tree medications and still having too many headache days per month.

Since being under my headache specialist, I'm thankful as it's the first time in many years that any treatments have worked or gradually eased my symptoms.

My recommendation is find and get your local Dr to refer you to a headache specialist. I'm up at the Walton Centre in Liverpool, but there are others nearer down south in London and Birmingham for example.

In terms of relief and treating the condition outside of medications. A no smoking, non alcohol lifestyle, taking & building in regular gentle exercise, staying hydrated and keeping regular sleeping patterns is all a must.

As the condition is worsened and linked to exposure to trauma and stress,( as stress can break down the nervous system), then anything that helps you relax mentally and physically is a must for trying to keep your body and brain in a calmer state of equilibrium.

I do hatha yoga and meditation twice a week to centre my thoughts and help with relaxation. I garden as being around nature and the outdoors sets teases me. This helps prevent attacks occurring and lowers my overall body pain as a result. I've cut out wheat out of my diet and drink much more water daily and eat more regular meals.

I take Pregablin at night and though it doesn't cure my sleeping problem it helps deepen my sleep patterns when eventually I do fall asleep.

For thirteen years I wasn't able physically to exercise at all and two years ago, I was having attacks daily with gut pain, eye pain, body and head pain and major fatigue and mood disturbance and was literally confined to bed on a daily basis. I wasn't functioning at all.

Gradually, with the help of my neurologist and getting correctly diagnosed and treated, I started to push myself to exercise for 5 minutes every day, then that lead after a year to 15 a day and now after two years, I'm doing it an hour a day.

I'm far from well and still unable to work but I'm out of bed and mobile, making my own meals again and having less pain overall.

I'm still very sensitive to sound and light but I can be around people now in a quiet and controlled setting, as for a year before couldn't even manage and cope with any social interaction. Eight months of being house bound.

I hope all this information helps you in some way.

I had to fight my local dr for years to get the correct referrals to the right kind of dr to see.

When you have a lot of symptoms or pain in many distributions, sleep disturbances or mood disturbances it all points to the brain as being the problem if you think logically about it. But GP's don't know anything about headache disorders, as they get no lectures on the subject in medical school and therefore, don't know how to make a diagnosis of MIGRAINE and so, inevitably patients are left suffering and struggling in the dark trying to work out what's wrong with them and start accessing suitable treatments for many years.

I found out everything the hard way and had to be the one trying to push for answers and push to get better when my local dr didn't care and weren't helping or listening to me at all.

I was repeated told I was imagining my pain and it was all in my head. It was, but not in the way they were implying.

Look up the migraine trust website online and a lot of information can be looked up and gleened from there.

Headache specialists are few and far between sadly here in the UK and are a very specific branch of and within neurology. So, you must see a professor, top of the learning tree medically speaking in order to access someone who can treat your symptoms and condition.

I don't know why there are two terms for the condition, but there is and I think it boils down to neurologists doing their research separate to rheumatologists.

Best of luck.

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I've been diagnosed with chronic migraine and fibromyalgia. I think it's the same thing and all to do with messed up messages from the brain! Sometimes I think the

specialists need to look at the whole picture as not dismiss other symptoms that are not in their 'departement'!

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Hi do you know any London specialists?

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Dr Georgio Lambru, who's at Guys & St. Thomas hospital, is probably one of the best headache specialists in the country to see. Though you will have to wait a few months after a referral is made to see him. There are others of course. Check the major London hospitals and look under Headache specialists departments. It's a special branch within neurology. Oxford also have specialists in this area at The John Radcliff Hospital.

I hope this is helpful.

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Never really heard of the theories concerning autoimmune or trauma, but I'm fairly new to this community and to FMS. I was diagnosed two years ago at 18 after suffering for 2 years with symptoms i now know are because of fibro. My theory, unusual albeit, is to do with blood and im thinking something around thin blood vessels or blood delivery systems.

My thinking:

-when first experiencing the pain i could only describe it as a feeling of clogging or blockage as it felt the blood was moving painfully slowly and creating a numbness in my arm. Because of this i found massaging the area felt like it moved the blood on and helped the numb pain go away.

-i am also a sufferer of Reynolds and i know this is to do with a lack of circulation and that numb cold pins and needles feeling is the same across my body and i have kind of drawn these two together in my head due to similarity of feeling.

- this idea of bad circulation would also account for the fatigue (especially when exercising) as the body can keep up with the demand for oxygen and therefore that instantaneous fatigue i get when exercising or climbing the stairs!)

thats where i have got to so far....

i am still trying to tie in migranes, light sensitivity, PCOS and sleep dep.

Any thoughts appreciated :)

also anyone else no longer to go bowling due to the excruciating pain... i miss making those strikes :((((((

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I have been reading up on this today. Current schools of thought are that it's psychological and can be related to stress or trauma, its hormonal, it's genetic, or its something to do with the way nerves transmit messages on pain. My own theory is perhaps they are all correct and can cause fibro symptoms. This would explain why there is no single treatment that works for everyone.

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