Is this Your Story?

When this illness started you were a highly driven person and pushed yourself to the limit, often more than your body could cope with. It started with one or more of the following; a viral infection, severe stress or a traumatic accident/incident (the trigger).

Several weeks later when you anticipate you should be feeling better from the initial trigger you now have the illness that gives you the chronic fatigue and pain. This continues for many years, if not for life, whilst you become more and more frustrated by lack of diagnosis, answers or remedies. You may even accumulate more illnesses as your immune system overloads. At some point you will feel so low for so long that your internal voice will keep repeating a phrase that reflects the terrible thought that you are never going to recover. As you rarely look poorly you also have the issue of not only feeling very ill but having to convince others that you are. Their comments are far from helpful and are in total opposition to the driven person you know you are. This adds to the pressure and continues the downward spiral. At times you may be lucky enough to feel a bit better but whilst playing catch up with life you find it is the fatigue and pain that catches up!

I am looking to see who does and who does not relate to this story, so replies either would be appreciated in analysing and furthering and appreciation of strategies. that may be helpful to you. I will share my feedback. If, like me, you only type with one finger a yes or no would be very helpful.

Wishing you all you would want to wish for yourself. Thanks, Steven

44 Replies

oldestnewest
  • Yes I was just like that had a accident when a woman drove into the side of the bus I was driving this was 10 years ago and since then I have gone down hill feeling worse as the time goes now I never got to go back to my job as a bus driver I am now stuck at home with walking aids and a carer .

  • Yep 22 years ago botched op

    VGx

  • steven what a lovely way to present this fibro short and direct .Wish i could say what started mine other than i had a slipped disc 3 years ago and never got over it ,perhaps it was that.As regards typing i glide my hand across the keys then go back to correct errors.Jacksiex

  • i think you will find hundreds of people who can relate to this,as i certainly can..

  • yes i can resonate with what you have written i now am pacing myself. I had glandular fever and allergies (allergic rhinitis) then a car accident i worked two jobs then got rsi (tenosynovitis ) and had to leave work i have got worse over the years. more joints painful and back problems was diagnosed last year with fibromyalgia after years of pain and exhaustion. When i look back i was always busy all the time filling my life with activity then crashing and burning now i have learned to slow down and listen to my body.

  • Yep, I can relate to this, although mine was severe stress (work + personal), rather than a physical trauma. But definitely sounds about right! xx

  • I was only diagnosed this year after having this for 11 years. I worked in a sterile services department in a hospital. We had to have the hep B injection because of the risk of catching it from the instruments. An hour after my second injection all my joints became unbearably painful and I was walking like an old woman. This was my trigger and I have had pain every day since.

  • Yes but now been told that it is Functional Neurological Disorder!!!!!!!!!!!!!!

  • Thanks getactive, I would just like to say I'm not stating anything. I'm trying to find out! Thank so much for joining in, Steven

  • Thanks everyone so far. I would like as many responses as possible as it would be helpful.. What I am hearing so far fills me with great hope for you all. I don't want to influence so will explain later when I have sufficient replies.

    Thanks everyone. Steven

  • Yes that's me , started with a panic attack in an extremely busy part of my life 34 years ago x

  • 8 years ago I lost my Dad to Cancer which turned my world upside down, inside out! The on top of that had to deal with anti social neighbours who ruined our lives, from trashing my car to trying to burn my house down. So I really think trauma and stress are a big factor. Ann x

  • i can relate so much to this,i feel useless in the real world along with FM i also suffer with agoraphobia,depression,i have been a victim of violent abuse,mental torture which caused my mind to shut down for three months i had total apathy, then in 1999 i spent 2 1/2 months in hospital as my apendix burst and was given 24hours to live,i had to have a major op in which im grateful,but the whole process was such a shambles, then 4yrs ago just when things were looking up for me (new house,fresh start,grandson being born,new life) it all came crashing down on me....it was a beautiful day,i was stronger than ever,a time when i was thinking about my future, i mowed my garden,and it started,right there! my elbow was killing me,and i remained in pain for a week,i went to the doc,he said i had tennis elbow and gave me a steroid shot in my elbow,and it felt bliss for about a month,but then i had pain on the opposite side of the same arm,doc said i had golfers elbow this time he gave me another shot on the inside,was ok again for a month,but had to go to the hospital to see the rhumetist as the tennis elbow came back,she gave me another steroid shot,and pretty much just after that i was having jaw problems,strange things that i couldn't even explain properly were happening to me,i felt my sternum bone snap and move forward,my mouth was in agony i had to have extremely regular visits to the dentist,the docs and the hospital,in A and E a lot too! my arms didn't feel like they were a part of my body,and worse was to come,it was when trying to relax in bed,i kept waking up screaming i could feel no feeling in either parts of or my whole body,my head felt like it was too heavy for my neck,since then i have been on what i call a rollercoaster......i wish people could understand our pain.....i wish i could understand why there's no proper cure....there is so much more to my story that it is hard write down in one go,but i just wanted to share....thank you for your interest...gentle hugz XX

  • A great big hug to you. I do understand how much it hurts and also how much it interferes with your life. Pain should just be a temporary urgent call to action. Whilst we are in pain there is little else we can think about. I do help a lot of people with pain removal and am just trying to understand whether the same techniques would help people with fibro. Your reply and those from everyone else so far are very encouraging. Thanks again, my heart goes out to you, Steven

  • I USE MAGNETIC NECK WRAP TO HELP WITH MY PAIN.IT RELAXES MY WHOLE NERVOUS SYSTEM AND WARMS ME UP IN WINTER.IT IS IMPORTANT TO DRINK PLENTY OF WATER WHEN WEARING ONE.YOU CANT USE IF ANYONE HAS PACEMAKER FITTED OR ANY OTHER MEDICAL DEVICE FITTED. HOPE THAT CAN HELP ANY ONE WITH FIBRO. HEATHER

  • I hadn't realized until recently when i attended counselling that mine started with my mother telling me she didn't love me, didn't want me and wish i hadn't been born. Then we had to move house to protect us, from what? From the fact that my dad had been married before and there family that might tell us. I was 4. I went to school with strange children and i stopped talking. I didn't learn to ask for help and i didn't learn to socialize either. I was bullied all the way through school. I suffered from depression for as long as i can remember. I never believed in myself so i never won at anything. I didn't think i was good at anything either. I failed at school not because i didn't know things but because i believed i didn't deserve better. I passed my nursing exams and at the same time the only friend i had ever had in school died suddenly from a freak accident. I was alone. I have gone through my own life alone. Although i got married he was an animal and he did things to me and his children that he should be locked up for but he got away with it. When i finally left with our 4 children i was alone again. I have brought up my children on my own and they have all been to or are at university. I am proud of them and tell them so, i also tell them that i love them but i also worry about them too. But in the end it came down to the following my niece dying in a car accident 2009, i had pneumonia took 2 months to get well and just as i managed it i fell down some stairs and that was the end of it. I have had ongoing seemingly unrelated symptoms for the past 9 yrs since i went 40. This is my life now i am not sure i have strength to get up again. Thank you for your comments i very much appreciate what you have written. Gentle hugs

  • *gentle hugs* I think you are VERY strong to have survived all that you have. Yet I understand all too well about the feeling of being unworthy. I have had the same issue most of my life and for a similar reason I'm sad to say.

  • One day at a time that is we have, just one day.

  • hi, i have to answer to yours as i relate to the body not feeling yours i get paralys feelings from neck to foot, i open my eyes but the rest of me is heavy dead no feeling (like having epidural)? i have had one of these 23 yrs ago and back started. so my eyes open i lay there unable to move then my hands and arms start to wake and then my legs its a very scary experience and on the 3 occasions its happend no one has been around and beside i can not speak to ask for help either.. freaky weird and scary as i wander for the futre as this is just pretty recent happend.

    I wont go on to the rest of my life as take up this whole lot lol.. but you have experieced such a lot and you are here to share your story and hope that you are enjoying this site xxxx soft fluffy cloud hugs to you xxxxxx

  • Yes Stephen can definetly relate to the both the person and emotions you describe in your post driven, overcaring, eager to please, couldnt say no - that just about describes me lol. Gosh not really sure I can pinpoint the actual trigger as Ive had a few traumatic life experiences beginning when I was a passenger in a car crash when I was approx 7 yrs old, I then lost my dad to a massive heart attack when I was 15 yrs old; my mum and I fought to resussitate him bringing him back three times before sadly loosing the battle. Then in my early 20's I spent several yrs in a physically and mentally abusive marriage where sadly I had a miscarriage and then was later diagnosed with post natal depression; this lead to a suicide attempt before I finally lfound the strenght to leave with my 4 children whom I have raised alone ever since; two of my now adult 4 children have special needs including autism, personality disorder, epilepsy, dispraxia and anxiety disorder. A few yrs ago out of the blue I suffered an anaphalactic shock (severe life threatening allergy attack) which has left me left me with allergys and intolerances to foods chemicals metals plants etc. Then I was finally diagnosed with fibro after suffering a collection of weird and wonderful symptoms for a number of yrs.

    Gee whizz reading that back I've had quite an eventful wee life havent I lol but trauma aside i'm a relatively happy wee thing with a positive attitude and Im blessed with amazing family friends and work collegues, ive reached a stage in life where Im at peace with myself and can generally find the positives in most situations and ive a wicked black sense of humour (most Irish people do) which helps me through the lows of life. So what triggered my fibro mmmmmm!!! would you like a 50/50 or you can use your phone a friend option lol

    :-) Dixie

  • Hi Dixie i share some similar experiences and take my hat off to you for being strong and moving on with your children :-) xxxxx

  • Thank you all for your replies and sharing with me. I would like as many answers as possible as this is really helpful. If there is there any way you can encourage other member to contribute that would be appreciated. So far we have zero "no's". if anyone would answer "no" I would also like to know.

  • Morning Stephen going for the 50/50 option most of us have it triggered by an accident or event/ in our lives. I am actually unsure which of many thing was the catalyst but I know I have ben suffering badly for at least the last 12 years or could be 15years. It is proggresive and very debilating. My daughter also has developed CFS which is so closely related to Fibro they could be the same hers so do we carry the genes just waiting like a ticking bomb for the event to start them of.

    Reading Dixies input I found her references to anaphalatic shock interesting I was badly stung by a wasp which triggered this. Could that have been the trauma that started mine - I do not know. Could it have been a trauma following a serious accident again I do not know the only thing I know for sure is I have it and living with it takes its toll on you.

    xgins

  • Thanks for sharing. My personal thought is that it is not genetic, I feel the family link is in our personality type and core values. The driven personality occurs frequently as you can see in the answers so far. This fits in with a theory I have for M.E. and I am seeing if it will be of help to anyone with Fibro,

    I will freely share my thoughts with you all when I have sufficient data to draw a conclusion.

    Wishing you the best, Steven

  • I can relate to your story.

    I was always on the go, working part-time, volunteer for several charity committees, fundraiser, etc,ect, carer for my mum & single mum of 2 teenage girls when it happened.

    Had just started a new job when, BANG. Was involved in a car accident. Was getting over it with lots of physio & pain killer, when 10 weeks after the first car had been written of the second one got the same treat, BANG. Was taken to hospital on stretcher again, but this time I had no feeling below the waist, was terrified. Ended up having to have injections to relax the muscle.

    Anyway, 10 years down the line, I'm on the roller coaster ride of FMS with depression, add immune system problems, weight gain, the list goes on & on & on.................................... Good days & bad day, bad days outnumbering the good at the moment.

    But I still think/feel I'm lucky, (some of the time) LOL!!!!

    Cause I'm still alive & very lucky to have a new partner, Colin. Who is now very understanding & supportive, 2 beautiful daughter, who are now growing up to be wonderful adults, one who has given me a beautiful granddaughter who is nearly 3 years old & is expecting another baby in January. 3 step daughters & 2 gorgeous step grandchildren, 1 girl & 1 boy. Also, Colin's parents who have been amazing.

    By giving my new family information about my FMS & keep re-enforcing the fact that with their help/support & understanding. I will hopefully start having more good days than bad. Life today couldn't be much better, at the moment, anyway!!!!!! :) (Pain free would be wonderful)

    But,by trying to keep a positive outlook on life, pacing myself, keeping my family informed & having their support, has turned my life around from a downward spiral, on the helter skelter, going deeper & deeper into the gloom of FMS, to my roller coaster life I'm living right now.

    Anyway, I hope this helps anyone who reads it. I'm not saying it's been an easy journey, cause it hasn't been. Lost a lot of my friends, but with the support of those who really love & care for me I'm getting there.

    Sending gentle hugs & best wishes to all my fellow sufferers & if anyone wants more info on how I got to this stage in my life, then feel free to ask. Will help out were ever I can.

    :) xxx

  • Yes!!!! Definitely!!! I was a senior manager and gave my all to my job. I had to leave for a number of reasons, but my husband became very poorly. That's when the fibro started, and hasn't let up since. My husband sadly passed away in 2006 and that's when my lymphoedema was diagnosed. So I can relate totally with what you say.

  • Ive had ME/FM/CS since 1987. Had to take early retirement because of it, at 52. Always burnt the candle at both ends but only where my family and home life was concerned. Have always suffered from IBS since I was in my teens.

    In the late 80's my daughter had 4 children in 4 years,middle ones being twins. I was running to work,going to her house in my lunchtime and evenings to help her out and help by having my grandson stay with me at weekends. Have never been one for socialising and was quite happy to relax at home when not working. Then in 1987 it hit me. ~There was a plague of flu sweeping across the county and I got it, never to fully recover. Anyway,since then things have just gone from bad to worse and these days am agoraphobic but can cope with that. In too much pain to go out and walking is now difficult. Just got fed up with going to doctors, they don't help at all and most of the time its just a guessing game with them.

    My grandchildren have all grown up now and my daughters don,t want to know. Don,t get me wrong they are there if I ring them!! and live 2 minutes each direction of my house, but it would be nice if they could help me more with my housework.M y husband is here and I'd be lost without him. We're getting on a bit now. The pain doesn't get any better and doctors are fed up with me and just recently I became very ill and had to call an ambulance. Carted off to hospital and now have Glaucoma.

    So my answer is, don't burn the candle at both ends and think more of yourself when you're younger because believe me, when you're older no one wants to know and even your friends disappear.

    Hope this has been of some help to you.

  • Yes, I got M.E in 1996 after yet another 'virus'. I tried to keep going, even going back to aerobics, but it did me no good at all. My husband, who I met through the M.E Singles Group, also began with a virus 22 years ago after working with chemicals in his business. We're both still ill all these years later. I'm more stable after being found to have Hypothyroidism but my husband is worse as he has developed sensitivities to certain foods and most medication. We have some symptoms the same, some different, but we're there to support each other as best we can. No-one else understands and, as you say, when others see you, they don't believe you're ill. We live only a half-life as most of it is spent having to rest in order to look after ourselves.

    Karen

  • ya me too had a back op 10 years ago,,,,, and I was awake... And could do any think as I could not move, or speak I through I was going to die,,once the doctors released they put me to sleep ,,,,

  • Hi Steven, yes I can recognise myself in your post. I was working in a job that I loved and worked very long hours, even working when I went on holiday. In addition to working full time I studied and completed one further degree and was in my second year of yet another when I became ill. So I suppose that whenever I wasn't asleep, I was doing some kind of work! After a short stay in hospital in the Spring of last year my health took a nose dive and I have never really recovered. I was diagnosed with FMS/CFS earlier this year.

    I think we will all be very interested in finding out more about your theory, especially if it turns out to be a helpful one! Jane x

  • yes me too, after many years of ME after a virus, I had a serious fall downstairs cracking the back of my head, followed shortly after by a TIA. After that i just got progressively weaker untill after about 8 or 9 years I was finally diagnosed with fibromyalgia. I always pushed myself to the limit, unfortunately still do, although my limit isn't very far anymore!

  • Thanks everyone for sharing such intimate and touching life stories. This has been most helpful and all of them fit in with my theory. I will have a few days to clarify and put together a detailed explanation which I will post in the blog section (I assume that is the best place). And if you then think it will be helpful I will write individual blogs on practical ways to improve your quality of life. Is that ok?

    Thanks again, Steven

  • I used to have a full time job as a administrator ina high school as well as looking after my three kids, one son having Autisum and related learning dissabilites and he never sleeps, but i always coped and took it in my stride.

    I had a good social life and liked fund raiseing,then i had a car accident an uninsured underage driver crashed headon into me, that resulted in a spinal fushion, looseing my job and the begining of FB although i did'nt no it at the tme.

    Its taken 8 years to get diagnosed in that time i have been additcted to oxycontin and oramorph,the pain clinic treated my shamefully and so i went cold turkey on my owm locked in my bedroom, not something i would advise to anyone.

    So yes i was once a driven enthusiastic person and now i dont recognize myself. Everyday is a painful struggle from morning to night and also through the night..

    Im shutting up now i got that off my chest.

    Hugs Tina x

  • If I had read this post last year I would have agreed but in January I was diagnosed with "Secondary Fibro" caused by long term severe pain (another condition)which extremely effected my sleep pattern. I went to Rhemutologist to have a diagnoses confirmed and thought I didn't have Fibro after all but they said to that was not the case I now had new condition plus Secondary Fibro. At least I know what caused mine and after 7 years of denial and non acceptance I am now able to start getting on with my life because I know the whys x

  • Thank you for responding. I had not heard about secondary Fibro so will do some research on that. I do know that pain when constant increases the size of the neural pathway in the brain and perhaps it relates to that. I do help people all the time with reducing or eliminating pain and so my research is into whether the same techniques will be effective against Fibro. Please bear with me while I do some more study and analysis from these very helpful comments.

    Regards Steven

  • Hello Steven, your article was like reading my life synopsis, I worked in Pharmacy for several years doing very long hours and driving many miles, my husband had an equally crazy work scenario. I had an operation on my knee, January 2010, everything went well and six weeks later we were in the French Alps walking on snow shoes!!!! Within a month of getting back from France I suddenly had this awful experience of feeling as though"gollum" had attached himself to me, I thought I was going crazy, I visited my GP who was 98% sure I had Fibromyalgia but she referred me as an urgent referal to a Rheumatologist, who confirmed I had severe Fibromyalgia. I have a very good relationship with my GP so my course of meds were soon established apart from when new symptoms started to kick in and then we looked at what would benefit me and not interact with other meds. I was in despair even so and if someone had dropped a £20 note on the floor and said.... "If you can pick that up and get up again you can keep it" I would have been unable to do it. I attended a 10 week course at my local Hospital fundamentaly explaining about Fibromyalgia and how to live with it. I had attended 4 when I was involved in a non fault Traffic Accident, I was waiting at a junction to turn left and someone drove straight into the back of me. From this I sustained severe whiplash, hot/cold therapy, physio, fibro???????? Six months later again I drove into a supermarket car park and into an empty space. The car to my right began to move and I felt myself being lifted up, somehow the driver had reversed at such an angle that he lifted my car with his and then dropped it, I felt sick, shocked and in immediate pain and on my rounds of consultations and physio etc I found that I had an impingement of my shoulder, and my Fibro symptoms intensified.

    November 2011 my GP diagnosed me with M.E. as well as the Fibro and still I feel extreme fatigue and I really try hard to carry on as normal but I had to give up work through all of this and I don't know what normal is right now.

    Hope I haven't bored you.

    Regards,

    Soulsusie

  • Certainly not bored, really intrigued by your story and how well it fits in with the others.

    I have helped 7 people with ME to vastly improve their life based on a theory I developed after studying the stories of three people who had recovered. I'm pleased to say, in every case the story is the same sequence of events. I'm just working on the best way of explaining it and will be back in touch. Regards Steven

  • Thankyou so much Steven, I am going through a myriad of emotions at the momment, my Father is coming towards the end of his life which is enormously difficult for me to deal with plus my conditions, I know that I will probably have total meltdown afterwards, but believe it or not I will try to keep positive and strong.

    Regards Soulsusie

  • well... wow some stories everything coming out and touchng too.

    I love research am just not so good at explaining..hmm my nature.

    A roller coaster with out noticing and burning candle at both ends i guess, was warned in 2005 if i did not stop i was a ticking time bomb waiting to happen and i was like hmmm but i have sooo much energy i only come to say my heart feels a little weird and a pulse test done and double of normal person.

    anyways i guess there is confusion with my condition with BHMS/eds (not the life threating one phew) but at the same time Neurologist was very annoyed my conditon never spotted over the years as i was born with it. i have the Neuropathic pain in both sides as i have cervical cord compression from Moderate to large discs.

    I have IBS since 18 and Gastro Reflux issues too wow one extreme to another, i try take everythng with a pinch of salt as one minute in hospital wandering omg whats wrong to back on feet bubbly dancy me again, but now puh have trouble buttering a piece of bread etc etc .

    quite a life experience i have had too. too much to put on here as i talk tooo much!!

    I believe a hernia simple laparoscopic op is t blame in 2010 (long story wont bore you) and now i have a vivid imagination and feel physcic thinking i hope i dont end up in a wheelchair! but if i do got plenty of help. got to keep smiling am self -employed turned employer (no choice as thought would get better) so what little custom i had i wanted to keep incase i recovered ! so i used what i earnt to pay others so i have given others a job in that sense , i still believe in my little peanut brain i will recover but in my heart i know i wont eek

    i have suffered car accidents, sprains, breaks, rare glandular fever, root canals, dry socket, kidney infections, and much much more had 4 kids - 3 to one and 1 to this one wanderful hubby so cannot understand why its like a living voodoo hell (may as well be in prison)

    well sorry for all that theres much much more xxxxxxxxxxxx

  • Hi fairycazzie

    Thanx for your wee comment above :-) its much appreciated reading all the comments on this blog its seems weve all been through the wars phyisically and mentally but what really stands out is the fact that were all survivours and thats something we shud all be damn proud off xx

    Dixie

  • Yes Stephen, this is my story.

    Though I cannot pinpoint my trigger, I suspect it all went downhill in a rapid succession after my mother passed away in 2008. We were very close, yet I found out after she passed that many of the things she believed were simply not true. That being she had created her own little world based on her own made up beliefs about how her family was, behaved or what they believed themselves.

    Consequently, I never got to know her side of the family very well at all. We rarely saw them. So when I found this out after she passed, I felt as though she had lied to me my entire life and that there were many things I believed to be true because she said they were.

    It took a long while to get my head wrapped around it all. In the end, I forgave her and lost the anger I experienced over the whole thing. I still miss her dearly of course. Every day.

    Yet I've had other significant traumas in my life as well. Several whiplashes and a few very serious surgeries (one life threatening) all before I was 20 years old.

    The personality traits you describe are dead on though. Hard worker, very dedicated, severely multi-task based lol. I never took "no" as an answer to anything. I simply found another way to get things done.

    Now? not so much. You can read all about my personal experiences in my blog. The link is in my profile here, just click my username to see it. Fatigue is my 2nd big issue after the pain. I am always tired. Seems like I'm wading through chest deep water all the darn time. Everything is a struggle.

    Good luck in whatever it is you are compiling the data for :)

  • Many thanks. I formulated a theory based on similar trigger stories of people with M.E. I have tested out with good results and wanted to know if Fibro was from the same core issues. It does seem it is. I have also helped many people with pain relief where it relates to "old" injuries and am looking to see if the same techniques would help someone with fibro. Will freely share these techniques , I just need to phrase them and explain them well, so working on that now.

    Wishing you well. Steven

  • Thank everyone, just going to post my findings and theory here on a blog.

    Be gentle with me!

    Steven x

  • Welcome and your story does sound familiar to me.

You may also like...