Was your fibro lurking for years?

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Was your fibro lurking for years?

Postby darcyjade » Sat Mar 09, 2013 11:30 pm

Hi everyone

At age 45, I was diagnosed last week and am just trying to put this diagnosis into some perspective, as logically this illness didn't just happen one day, but I believe has gradually built up in symptoms, to the stage where a diagnosis could be made.

So, I am wondering, how long do you think you have had FM? Do you think it has always been lurking ready to strike?
I know that some of my symptoms like IBS and recurrent UTI's started in my early 20's - and have at times gone into remission.

I also know that I have never tolerated exercise that well, it always resulted in me being very tired afterwards and craving high carb / sugar foods - which sort of defeated the object. Plus I never did find a sport or exercise that I enjoyed or got a buzz from, nothing gave me that adrenaline high that other people spoke of.

On one occasion the whole family (about 20 of us) did a 16 mile bike ride - I was about 25 at the time and in general good health, and although I completed the ride, eventually, I was in a lot of pain for 4 days after. To such an extent I was taking anti-inflammatories every 6 hours for all 4 days - none of my family needed to do this and they all thought it was hilarious seeing me hobbling around.

So, just out of curiosity, do any of you think FM has been lurking?????
:-)
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Re: Was your fibro lurking for years?

Postby hooplykim » Sat Mar 09, 2013 11:47 pm

Hi there

It's a possibility, I'm 34 and was diagnosed last year but had symptoms for a while. I had IBS while I was growing up which as we know is a big part of fibro

They say that the symptoms appear after things like trauma and accidents/illnesses etc so I reckon it could be there lurking just waiting!
Fibromyalgia is not who we are, Just something we have.
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Re: Was your fibro lurking for years?

Postby Sujo69 » Sat Mar 09, 2013 11:56 pm

I agree. I am also 44 and diagnosed last year and can remember joint issues as far back as 15. I agree with all what you said about low tolerance in sport etc. i also has ibs early 20's, headaches from late 20's etc eyc. On Lyrica now and it is helping.
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Re: Was your fibro lurking for years?

Postby hooplykim » Sun Mar 10, 2013 12:04 am

Yes with the migraines I was diagnosed with that in my teens too, so it's a strong possibility fibro was always there. I did like going to the gym and that though, the tiredness aspect never really hit me until the fibro reared its ugly head, needles to say, a trip up the stairs now feels like I've been at the gym for hours!
Fibromyalgia is not who we are, Just something we have.
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Re: Was your fibro lurking for years?

Postby Caffycoffdrop » Sun Mar 10, 2013 12:08 am

Hi darcyjade

I also think this is possible. My fibro became apparent as a result of my nursing my OH following an operation he had so it might have been lurking around somewhere. He needed medication every three hours, throughout the night, and could not administer this himself as he was so poorly. I was also trying to hold down my job so I had to dash home to medicate him appropriately during the day. I got into work early, drove home then back to work, then back home to treat him, back to work for lunch at my desk, back home again three hours later, back to work for a couple of hours, then back home to prepare our evening meal, prep for the next day and then into bed with the alarm set for 3 hours later! This went on for about a month before we then had to deal with physio, but by this time he could at least sort out his own meds during the day which helped considerably. But by this time my sleeping pattern had been destroyed.

A few years later I was dxd with MS and I don't know where this came from!!

I think there is a gremlin out there somewhere 'dishing' out fibro as and when it fancies.

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Re: Was your fibro lurking for years?

Postby Pinkprincess205 » Sun Mar 10, 2013 12:11 am

I had a car crash in 2010 and symptomsbeen bad since then and got diagnosed in 2011. But looking back iv always been the ill one in the family, had ibs for as long as i remember, had migraines since my teens always been on migraine meds, in 2008 got diagnosed with a dizzy balance condition, i always caught every cold or virus that was around. Was always in lots of pain for any injury and took ages to heal, always had travel sickness which i no is common with fibro, so yeah i would say fibro was hanging round a long time before the trauma of the accident.
Vic x
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Re: Was your fibro lurking for years?

Postby Pipsie » Sun Mar 10, 2013 12:52 am

Almost definitely. I have never got on with sport or exercise, however thinking on it (I am 27 and also have had endometriosis, IBS, irritable bladder, migraines, blah blah), when I was a teenager my mates would say they always stayed up late (and I was shocked at how late) seemed to function, and I remember willing going to bed early, and still be pooped the next day. My repeated throat infections- three times in 4 weeks once... I was on a camp bed in the living room for days I was too weak to do anything. Insomnia. Awful, blinding pains in my knees when I walked- especially on concrete (I'm a country lass)- that would last well after stopping. I had chronic bronchitis all winter every winter, and to this day I still get an annual chest infection from hell. I have so many allergies/in-tolerances to medicine, too. Especially antibiotics. I catch bugs for England too no matter how careful I am! I started getting IBS really young, i remember not being able to eat dairy at about 4, white bread at 11, and then it was steak, then lamb, then pork, then chicken, and now I am forced vegetarian with a steak fetish! LOL

I remember as a child lying for ages in the same position reading but by the time I was a teenager couldn't for the shooting pains and numbness. I stopped being able to stand up with both knees locked (as a kid I did loads of dance, so shouldn't be a problem), I now fidget like anything, and almost always needed to sit down after about 5/10 minutes. I hate queues. I've suffered from crippling bouts of backache since I was 16, it comes, I am immobile for a few days, something pops, and it goes, I continued as I was. And my endometriosis on top of all this, I'd wake up in the middle of the night at least one day every month from 13 writhing in sheer agony the worst pain i have ever felt, with doctors fobbing me off until I was 22.

People I used to work with in my various student restauranty jobs (from 15-23) who would do an evening shift, and go out after or come in on an early after a night out... Or both! I have never been able to do this, I tried but boy oh boy it didn't go well, I could barely move some nights after working. My back, knees, arms, legs used to scream with pain for hours. My first job from school caused what I now know was a flare, I could barely walk, think, and I was in loads of pain... But I rested a while and thought nothing more of it. That job was awful, c'est la vie, non? After every shift, in each job I have held since has left me tired at best, I just never thought anything of, at work, I'd just clicked my bones back and got on with it, take a few painkillers. I exercised and ate well so I just got on with it, kept pushing. Kept going into work with fevers, endo attacks. Push Push Push.

My body crashed about six months ago, after struggling to regain myself after an operation to diagnose and treat the endo in 2010. I eneded up in retention, catheter, infections- I reckon about 12 different antibiotics in about 5 months, I bled for 5 months. I looked like a zombie. About a year ago, I'd wnet to the doctors and I told them I thought my body was (for want of a better phrase) giving me a massive 'f**k you'. I said I thought I was getting FM (a friend has ME), or CFS. She scoffed at me. So I kept on my job (my own business-tiny but mine) as a housekeeper/carer/PA for a retired diplomat (fairly full on), I applied for nursing at uni, got in, kept working, seeing my friends, helping my friends a lot (I can't say no LOL)... Getting ever worse, until one day. Bof. My body just gave up. It's like it just f***ed off. I could barely feed myself, for months I felt worse than death. I am a lot better but nowhere near what I used to be. I'm still house-bound.

This has really got me thinking... Could I have changed it? Could something have been done differently? I wonder if the endo set my pain bar so high that I have just thought so little of the other pain, I have ignored it? That does sound a little matyr-like but it is a genuine question... I guess we play the hand we're dealt but I really think that there were some cards in play that I really didn't know about or take in to account... FM is a really heavy thing to deal with sometimes but I guess if it has been boiling away in the background that means I can restore myself to glory, surely? :D I am quite an optimist! The flame of hope burns brightest in the deepest dark. Wow, Sorry for the spew. Still coming to terms with a lot of this...

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Re: Was your fibro lurking for years?

Postby Iceskatemum » Sun Mar 10, 2013 6:46 am

personnaly speaking I think that we have a predisposition for this illness and can show I had one or two of the main symptoms quite early on.
I also couldn't tolerate exercise and grew up thinking I was just lazy or odd for hating the trauma of school sports. I just could not see how anyone could enjoy any sport. I tried a variety of sports over the years and wasted money on gym memberships but eventually left disolusioned after a few weeks/month . My latest being a gym membership that should allow me to exercise by walking lengths in the pool...but it is too cold and too tiring. Thankfully it was less than £5 per week so although I could do without wasting the moeny its not crazy amounts.


AS a teen I had crazy migraines that would floor me for days with residual tiredness and hung over effect. i always went down with whatever was going around and have had a number of pain events that have led to exhaustive tests and sometimes surgery but with then iffy results after the event.

So yes I do think it lurks waiting for the event that will allow it to become full blown...at the moment I see signs in both my DD and my sister but they aren't severe and so do not say anything for fear of them thinking I am just recruiting memebrs to this horrid club !

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Re: Was your fibro lurking for years?

Postby monica » Sun Mar 10, 2013 8:24 am

I'm glad I found this site! I've always thought fibro lurks or even we might be born with the condition.

As a child I had "tummy" problems and Doctors were totally unsympathetic with comments of "Oh she'll grow out of it" and later in my teens the tiredness kicked in. This time Doctors said "do more exercise it will give you more energy! :yikes: I didn't get properly diagnoses until in my 40s so had many, many years of wondering what on earth was wrong with me.

So yes I definitly agree we have a predisposition to fibro.
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Re: Was your fibro lurking for years?

Postby jennthefunkyranger » Sun Mar 10, 2013 11:46 am

I needed a lot more sleep than my younger sister as a child, and as an adult, I have not been able to handle late nights as well as others, on nights out at uni I was often the first home. Aged about 3 I got chest infections loads, but this was put down to the fact that my grandparents looked after me when my parents were working, and at the time they were both smokers. But then I gained a blooming good immune system, and I rarely got ill for years, I had 100% attendance all the way through high school, and other than getting diagnosed with Raynaud's disease aged 15, I was really healthy.

I ended up with IBS after living in catered halls at uni in my first year, though I wasn't aware that this was the reason for the food making me feel ill. I was completely fine living abroad in 2005/2006 for a year, but then ended up in a damp flat, and got diagnosed with asthma.

Things went downhill when I finished uni. I went on to do my PGCE, no problems, but then ended up in a tough school where I struggled, and resigned after 5 months. I was shattered, btu I was also anaemic, run down, and had had swine flu in that time. Things got a bit better over the course of a year, until in 2011 I had a car accident, and I think that is what really triggered the fibro. Although I got out and walked away from the accident, the pain started later that night, and all I wanted to do after was sleep, which I assumed was my body's way of recovering from the shock of it, but unfortunately the overwhelming tiredness lingered, as did the pain, until I was finally diagnosed last September.
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Re: Was your fibro lurking for years?

Postby motherconfessor » Sun Mar 10, 2013 11:55 am

I believe this could be the case for me too. I had glandular fever at 17 and then again at 20 and never seemed to fully recover my old self after that. My mum thought for years that I had ME as I just tried to carry on as normal a life as possible. Have had migraines and IBS for years. I fell in 2009 and really hurt my head and FM symptoms seem to have crept up on me since then.
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Re: Was your fibro lurking for years?

Postby LouLou » Sun Mar 10, 2013 2:15 pm

Hi Darcyjade

Such an interesting post. When I was first diagnosed last year my mum and I sat talking and we went through my childhood and all my illnesse/ailments and we were shocked to find that I did hav FM sympttoms showing their ugly head while I was a child.

Iceskatemum wrote:I also couldn't tolerate exercise and grew up thinking I was just lazy or odd for hating the trauma of school sports. I just could not see how anyone could enjoy any sport


I hated PE at school and would come up with all sorts of excuses to get out of it. It always left me feeling very ired and achy afterwards whereas everyone else seemed fine. My hatred for it intensified when I was hit in the knee by a hockey stick and had to have crutches for 6 weeks as my kn was badly swollen. Then I badly banged my other knee a year later and since then my knes swell up and hurt quite often - more so since FM really took over.

monica wrote:As a child I had "tummy" problems and Doctors were totally unsympathetic with comments of "Oh she'll grow out of it" and later in my teens the tiredness kicked in. This time Doctors said "do more exercise it will give you more energy


I had this too and no one understood why, no one really believed me and thought I just made excuses not to go to school. I was diagnosed wih IBS when I was 18.

I also remember that I never had as much energy as other kids my age. I have asthma and have had it all my life but that never really affected me doing activities. I just remmber always feeling tired, sleeping a lot and never being able to keep up with the kids I played with.

I think to a certain extend FM could have been hiding and it wasn't until I had a really bad period in my life where 6 months everything that could go wrong went wrong and I was under an enourmous amount of stress. Since then FM popped up to say hello and I can't get it to leave me alone now lol.
What doesn't kill you will only make you stronger ;-)
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Re: Was your fibro lurking for years?

Postby Patched » Sun Mar 10, 2013 3:48 pm

Hi. I'm 57 and was diagnosed with FM a few months ago. I previously thought that my FM symptoms began around 12 years ago, but this post has been very thought provoking and I think I may actually have had the first symptoms during my late teens / early twenties. My FM certainly worsened after a flare-up around 20 yrs ago, which was treated as 'Sera-negative poyl-arthritis'. More symptoms started to affect me after that such as migraines, sensitvity to light, IBs etc but each symptom was treated separately. It was the advice from a chiropracter & a podiatrist who suggested to my GP that the numerous symptoms over the years could be interelated.
I'd never even heard of FM until last year. Fortunately I have a reasonable GP who referred me to a Rheumatologist and..... voila! FM. :-|
I'm not a lazy person but I can relate to the comments about low tolerance to PE.
Thanks Darcyjade for starting the post, and to others replies. More reinforcement for me that I wasn't imagining my symptoms for years, going loopey, or becoming a hypochondriac. :crazy:
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Re: Was your fibro lurking for years?

Postby Panda58 » Sun Mar 10, 2013 4:50 pm

Yes I think I must of had years ago as well, I am 54 and diagnosed last year, but about 8 years ago I had a back problem and they could not find out why I was in so much pain and have not been well since then .
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Re: Was your fibro lurking for years?

Postby lolo73 » Sun Mar 10, 2013 9:07 pm

My FMS started about 15yrs ago when I had a work accident. I have known or guessed I had it for the last few years but kept putting it to the back of my mind telling myself I was imaging it. I finally told my GP just before Xmas and immediately he agreed, but he has never suggested it, he run the blood tests and then confirmed what I thought. I saw the specialist last week and basically she just wrote the symptoms down and said yes you have FMS, the pressure test seemed secondary and unimportant because she hardly touched me. A good DR is great but too many just don't seem to recognise FMS.
:(
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