Was there a trigger for your symptoms... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Was there a trigger for your symptoms Mine was likely the death of a loved one 🥹

PBMB profile image
PBMB
44 Replies

my symptoms all started after the death of my dad at the end of 2019 - I first started to take them ‘seriously ‘ in feb / March 2020 .

Although the diagnostic process was long - as most of you will know - the consultant felt it was likely that this Emotional trauma was my trigger .

Just wondered if anyone one else has a similar story 🤷‍♀️😇

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PBMB
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Blue-52 profile image
Blue-52

hi, yes had symptoms from an early age due to trauma, but I think 2019 tripped me over the edge to all the other illnesses my dad died then 18months later my mum died, then everything went downhill, I lost a year of my life that I totally don’t remember, and now im CFS, nerve damage and a whole lot of fm related illnesses, so yea I’m with you on this.

PBMB profile image
PBMB in reply toBlue-52

Thank you for your reply 😊

I am really sorry to hear about your losses .

Mine actually started with rib pain and then stomach pains which was diagnosed as chronic abdominal pain . But at the same time I developed rashes on my skin and since have restless legs , burning skin , raynauds ( although have always suffered to a certain extent) and tremendous Brian fog fatigue .

I do manage a fairly normal life but it’s Hard with a job and 2 young children . But it all keeps me going .

I have just started wigh itchy skin but I think the weather has made everything much worse . 🤦‍♀️🥶🥶🥶xx

Have you for support around you? What do you find helps ?

Blue-52 profile image
Blue-52 in reply toPBMB

it’s never ending, is it 😒.

Yes I have a lot of support, family friends neighbours.

Hard to say, I had a lot of trauma in my 20's and 30's, physical and mental, but thats also the time I had my children and for some women pregnancy and birth can be a trigger, I've seen it can be triggered by a virus. Then there's genetics, I'm adopted so dont know what's in my DNA, but I've read the theory that Fibro can run in families.

I guess the real question is if bereavement or trauma can trigger FMS then plenty more people would have it. Both are sadly common. So why is it some people go through extraordinary traumas or losses and dont get it and other people have it for no discernable reason, who've not suffered those things. Maybe there's a predisposition factor not yet discovered?

PBMB profile image
PBMB in reply toSparklingsunshine

Possibly . My consultant also wondered if childbirth might have had an effect too as I had 2 c sections and traumatic births and Thay symptoms can appear 5-10 years after . Guess will never know for definite bit would’nt change a thing there 🥰xx

Sorry to hear you had a lot of trauma 😞

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Mine started with childbirth in Nov 93,then aggravated by 2 car crashes

Majority of people can trace their symptoms starting back to some sort of trauma or stressful event in their life

SadiesMom profile image
SadiesMom

This is how mine started too ... I was taking care of my beloved mother who had heart and kidney failure ... it was terrifying ... in and out of hospitals ... I am proud that I never let my fear show and I was always there for her ... but it took it's toll ... after she passed ... I started having really scary symptoms that I didn't understand ... thought I had MS ... hadn't heard of Fibro ... my anxiety was through the roof and debilitating ... thank goodness for online forums as I haven't found doctors helpful at all ... I've had hypothyroid, IBS and anxiety my whole life (seems to be common with fibro folks) ... finally at age 60 a doctor suggested Buspar for my anxiety and it worked wonders ... it even helped my Fibro a bit ... seems there is a serotonin connection ... all of this is of course just my experience/opinion ... I have no medical education ...

PBMB profile image
PBMB in reply toSadiesMom

I think we can only go on our experiences really as there are certainly no definites .

Sorry to hear what you went through but I certainly agree that’s the symptoms were snd still are quite scary 😟 x

Welshcatlady profile image
Welshcatlady

Good morning, yes, I believe that my Fibro is related to stress, the trigger being my husband being diagnosed with Oral Cancer at the end of 2017 which led to a major operation in January 2018 - I was diagnosed in the summer of 2018.

However I think that maybe the final straw that broke the camel's back, as my first husband was an alcoholic and was violent when he'd been drinking, I was made redundant in the summer of 2008 and my mother died in September 2008, then in August 2010 I lost my sister. My husband was admitted to hospital in 2012 with an infection in a vertebra in his neck and was hospitalised for nearly 6 weeks. I had had symptoms going back years, but after my husband's diagnosis of cancer they got worse, and it was then that I went to see my GP and Fibro was diagnosed.

Thankfully my husband has made a full recovery and will be 5 years cancer free in January. 🤞

PBMB profile image
PBMB in reply toWelshcatlady

glad to hear this . But sorry to hear of all the stressful events yii have endured 😟xx

Booksgranny profile image
Booksgranny

Totally agree with you. My symptoms started a few years ago after awful & ongoing stress with regards to one of our sons. I read that trauma survivors are often diagnosed with chronic pain & autoimmune disorders because long term exposure to cortisol & adrenaline (fight & flight chemicals) cause inflammation in our bodies. Inflammation causes pain or worse causes our immune system to attack itself because it thinks the inflammation is caused by disease it needs to eradicate 🤗😣💕

1whitestar profile image
1whitestar

Hi , I'm reading all the replys about trauma can be a factor towards fibromyalgia. Looking back in 2011 in the space of 5 years my mum died then my father then my grandad. I had my daughter in 2012 carrying wasn't good had spd and then had to have a forceps delivery. Then after I moved house and got a different job and looking back I guess all this did not help. I'm not sure what causes my flare ups I think at the moment it's worry because I'm on sick pay from work. I only went to the beach for a day last year and that really made me happy. The beach or the sea just is a place for me happy. I dont do anything else I do puzzles etc and enjoy that. I try walks when I can . I wonder if happiness is something to do with fibromyalgia.

Patdoyle profile image
Patdoyle in reply to1whitestar

I find a walk on the beach most days makes my spirits lift and I feel a tad better. Started with 10 minutes walk and now can do an hour. Apart from that I do very little else.

1whitestar profile image
1whitestar in reply toPatdoyle

That sounds like you have done really well did you do 10 mins each day then the following week a little more. I will try this . Thank you for replying so nice to know you can do that for an hour that's what I want to build up to .

Patdoyle profile image
Patdoyle in reply to1whitestar

I started very slowly and just walked to the end of my road and back for a few weeks and then around the block for weeks till my body got used to doing it. Don’t get me wrong I was still in pain and fatigued but mentally felt much better. It took me about a year to build it up with many setbacks. I walk on my own too so I can stop if I feel bad without feeling guilty for spoiling someone else’s walk. I have to force myself some days to go out but I am determined to carry on because my fitness is better and my mental health. Some days I come home and then lie down for half an hour. It’s better than doing nothing which I did for quite a few years worrying about any exertion making me worse. Go very slowly if you decide to give it a go.

1whitestar profile image
1whitestar in reply toPatdoyle

My left first finger swells up on flare ups and I can't move it same as my any part that flares up . Have ypu heard of this with fibromyalgia this is the picture

Left first finger flare up fibromyalgia hard to bend and painful
Patdoyle profile image
Patdoyle in reply to1whitestar

we’ll your finger is definitely swollen. Could it be arthritis? My hands and fingers do go all puffy and the joints hurt but I think mine is osteoarthritis

1whitestar profile image
1whitestar in reply toPatdoyle

This is what happens I explained to rumerthogly she said its fibromyalgia. But I'm not so sure everyday I'm in pain and discomfort all over. I've sent this to the doctor this morning and they are seeing me today. My toes everything my jaw . I hope they can get more answers for me . I can't plan anything I just bean for a walk that was nice.

PBMB profile image
PBMB in reply to1whitestar

I be never seen this but it could be ? Have you asked your gp ? I get really bad raynauds but not swelling . Is it painful ?

1whitestar profile image
1whitestar in reply toPBMB

Yes it hurts warm to touch feels tight and won't bend fully . This is what happens with the flare up in my hands and wrist. Also when I get a flare in the leg it won't move or bend and my hips and jaw my toes my knees. Do you know any symptoms like this .

PBMB profile image
PBMB in reply to1whitestar

I would suggest you do visit your gp as your symptoms sound similar to arthritis . And as I start I would want to rule that out 🤷‍♀️

Hopefully if no answers you can get some help .

1whitestar profile image
1whitestar in reply toPBMB

Yes thank you alot of people are saying this.

Missy2006 profile image
Missy2006 in reply to1whitestar

I suffered the same as you 1whitestar but mine was due to breaking my wrist very painful so I had intense physio 3 times a week as I couldn’t move my hand and the pain was unbearable then a few years (2012) later I broke all my bones in the lower part on my left leg had many operations and the months that followed were so painful I wanted my leg chopping off as the nerves were so sensitive that nothing could touch it plus the swelling never went down the after effects is called RSD and still to this day my leg & feet are still suffering but now I have pain all over now 😖

So basically I would get your finger checked , good luck x

Coll82 profile image
Coll82

I’m so sorry you had so much trauma, I started feeling not right during my past relationship with an abusive ex partner, my consultant said that’s most likely the cause, I lived in constant fear for three years, luckily I have an amazing partner now

PBMB profile image
PBMB in reply toColl82

that sounds awful glad you have come out the other side and your partner is d so supportive ❤️

Patdoyle profile image
Patdoyle

yes mine started a few months after my mother died. I had looked after her for many years and her death was traumatic so wasn’t surprised when I started to get sick. I got very gradually worse over the following months and eventually had to stop working. So yes I do believe this kicked me off with CFS and fibromyalgia.

1whitestar profile image
1whitestar in reply toPatdoyle

I applied for pip and I've just had a messages to do a assessment over the phone . Has anyone done this and is this good news so they can find out more.

cassie2004 profile image
cassie2004 in reply to1whitestar

yes i have just done an assessment over the phone, but won't hear for about 8 weeks which will be the end of January 2023.

1whitestar profile image
1whitestar in reply tocassie2004

We're they nice to you on the phone and understanding. I hope they understand .

BlueTofu profile image
BlueTofu

HelloAfter a life of high stress and separate pain issues like IBS, hormonal migraines etc. I was caring for my mum who died from cancer late 2020, I felt utterly physically, mentally and emotionally exhausted. I felt I was recovering physically, when I had my Covid vaccination in late March/June 2021 , which individually set off pains iny legs and then arms and hands. Then I also developed coccyx pain issues. I managed to get diagnosed quickly by pushing constantly to get a rheumatology appointment, and got to a pain clinic just recently, as I self referred to physiotherapy. Nearly all the people I have come across in my online support group have had a bereavement, followed by a small physical trigger; and the pain just doesn't go after 'healing'.

Fern27 profile image
Fern27 in reply toBlueTofu

Sorry to read your stressful story but ……

I was interested that you said you had pains after your Covid jab? Because although I had a bad chest infection just before the first lockdown then was diagnosed with Bronchiectasis so went

Through this on my own through the lockdown and suffered with anxiety I didn’t get any body

pains until the next year which was after I had my vaccinations so 3 in 2021. I now have

Fibromyalgia and this year has been the worst

For all the symptoms including Migraines. I’ve

Been wondering if this was a coincidence or Maybe a reaction to the Phizer jabs.

Has anyone else had any Fibromyalgia related problems?

BlueTofu profile image
BlueTofu in reply toFern27

I think if our body and mind are in a very stressed or shocked state, our body can over react to something or develop an illness. I increasingly have bad side effects to medications. So maybe it could have been anything that came along that I reacted to. I also had gladular fever very badly in my thirties, and I have heard that can be part of someone with M E's. medical background. So I'm wondering about it and developing Fibromyalgia, as well.

PBMB profile image
PBMB in reply toBlueTofu

I can’t take any medication apart from paracetamol.

I cannot tolerate ampitripyline for pain or naproxen - made me violently Ill or nifidepine for my raynauds which means that I have to find other ways to help 🤦‍♀️

I may have spelt some of those incorrectly 😖

I find exercise to help but I’m finding this increasingly difficult due to rising fatigue levels !

I definitely know that glandular fever is a trigger for ME so that makes sense too .

Not sure about the covid jabs however I questioned whether my symptoms were originally linked to long covid ad they started at the beginning of 2020 which of course was before any testing etc … was available 🤷‍♀️

JoseT profile image
JoseT

Chronic pain can be due to fatigue, stress, traumatic experiences, and biochemical changes. When someone has experienced a physical injury, the ongoing memory of enduring that injury—along with emotional suffering from physical pain—can stay with that person. Emotional injuries, either recent or decades old, can accompany memories of trauma, abuse, and emotional neglect, and they be expressed by the body as physical pain.

There is an on-going research on how EMDR (Eye movement desensitization and reprocessing) could help with FM. EMDR stimulates the nervous system in a way that promotes healing, neutralizes painful memories and sensations, and perceives anticipated painful situations from a more positive perspective.

According to The Institute for Chronic Pain, up to ninety per cent of female clients presenting with fibromyalgia and up to sixty per cent of clients presenting with arthritis report a history of trauma.

If your physical pain originated from a traumatic experience or is it tied to a traumatic memory you could consult an EMDR therapist. EMDR therapy can treat an underlying trauma and help relieve the experience of chronic pain.

Yes. I didn't know it at the beginning when my body betrayed me.

DodgeDhanda profile image
DodgeDhanda

Hi PBMB.

I believe mine were all down to complications of what was an emergency surgery & it happened twice . I am very grateful to be alive & after years of self learning, adjusting & accepting I'm no longer the person I was years ago has allowed me to not only to love myself but to forgive myself too.

Also thank U for the question as it always good to remember how hard it was at the beginning to now

PBMB profile image
PBMB in reply toDodgeDhanda

No problem . It’s good to reflect isn’t it 🙌 unfortunately my symptoms seem to be getting more so however I am putting that down to the weather as I was much ‘better ‘ over the summer months .

I do my best I like to exercise - helps some things but not others 🤷‍♀️🤦‍♀️- I have 2 beautiful children who I have to carry on for as the are still young and a mostly compassionate hubby . I have also just returned to work part time 🙌

I have tried lots of meds but all upset my balance . I was recently diagnosed with costochondritis and the naproxen made me violently sick so I just try and deal with it !

Keep smiling 😊

DodgeDhanda profile image
DodgeDhanda in reply toPBMB

Remember be kind to urself & beware of self sabotage , I used to be very good at that & I would fail all the time until I realised I'm not who I was anymore .

So over the years I've learned to retrain my brain to teach me how to do things that make it best for me without aggrevating my pain & easiest so it didn't take long & if I was say doing the kitchen I would do a task then take a rest , then go again & rest and it took time but it was safest & best for me & I've gone on to do that with all challenges .

I too have 2 kids both daughters who are my shining light & I too had to raise them on my own as my wife wasn't supportive & well she left us. Upside I got the kids & they're now 29 & 24 & living their own best & hopefully happiest lives & I am too as I'm in a far better place with my mental health than I ever was & that's down to learning about me & my limits & I protect myself from harm as I would my kids even today. You have a brilliant right hand man & when we talk of long term illnesses , relationships do change & urs shows he is ur soul mate.

Remember ur not there to impress others ur there cuz U want to be . As U say there are 2 little people who U are half their universe.

Coffeemum profile image
Coffeemum

I have 3 kids, the first two I had pretty stress free births but my 3rd was quite dramatic and stressful, I was fine afterwards for at least 3-4 years then my father in law became ill with cancer and was told he had 6 mths left, he lived 3 1/2 hrs away and it was really stressful to visit him, I started getting pain in my fingers at first and then my father in law passed away at 59 yrs old it was so upsetting and heart breaking to watch and support my husband grieving and whilst we were down we had a horrible family member mentally abusing us. I feel like I was my husbands rock, picking him up and helping him cope, greive and be strong to fight back and he did and then my health just went from bad to worse over the following 6 years with more sadness, grieving and physical pain. I do believe it was this that has caused something in me that has become unbalanced as a result but really I don't know, I am so confused by my own illness.

Purple7265 profile image
Purple7265

Hi PBMB, Your situation is so similar to mine. Mine started back in December 2019 too. My sons marriage ended after only 6 months, when he found out his wife was having an affair with her boss. That was on the 15th December. My dad had been diagnosed with cancer earlier in the year and passed on 16th December. Just one day later. So I was told that's how my fibro started, or stemmed from. Xx

myalgiamale profile image
myalgiamale

Hi, I think I can lock my trigger down to not have my flu jab at the end of 2017, by December I had a bout of flu that lasted 3 weeks.

Around February time, 2018 I began to feel unwell, and by June, the same year, I began a number of MRI scans, specialist appointments, which takes me all the way to May this year, 2022, being diagnosed.

Nevergiveup123 profile image
Nevergiveup123

Aw I'm sorry for you .I do believe trauma can start this disorder.i was 41 fit as a fiddle loved working dancing etc.then got diagnosed oiled with breast cancer.treatment was very harsh then 3 years after got my fybromalgia diagnosis .life is so different now.although u count my blessings everyday too x

cassie2004 profile image
cassie2004

I think my illness started with the death of my second husband, he was killed in a horrific car crash, caused by a man that had fallen to sleep at the wheel, due to taking amphetamines.My first husband also died several years ago.I was 52 he was 56.Also my daughter in law died this year aged 45.

Hi PBMB sorry to hear this. I too lost a loved one and had been suffering with a lot of widespread pain and struggling with my diabetes control. I had a very important and busy job with the MOD and was doing a lot of hours and then caring for my dad prior to him going into hospital and then passing. I always noticed I was sorer than normal and was tired all the time. The year after his death and sorting out his affairs I relocated to the Scottish Highlands from the south west of England. I had taken unpaid leave with my job in the hopes of transferring to an office nearby. That never happened so I found myself more stressed out. The following year I suffered a stroke, the year after then diagnosed with fibromyalgia. Doctors believe that the death of my father triggered the stroke which then brought my fibromyalgia to the forefront since it had been left undiagnosed. I struggle day to day but have found having my animals has helped with my mental health. Luckily up here, our village quite often offers free courses (crafts, eco printing, photography etc) and I try to go on these to help with my wellbeing when I can since I rarely leave our property. I've tried the whole talking therapy to no avail. I think one of the things that helps me is being kind to myself and trying to heal that way since I am always hard on myself. 🙂

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