Was your fibro lurking for years?

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Was your fibro lurking for years?

Postby steve3 » Sun Mar 10, 2013 10:04 pm

I can tell a similar tale to everyone above.

44 now, and only just got a diagnosis after complaining and getting worse over the past two years. Finally waiting to see a specialist, but it takes so long.

Been suffering in various ways since late teens, even had everything from 'growing pains' to 'it's just an age thing' from various doctors over the years. Always had pain of some description, IBS, problems after any exercise, etc.

Was even jokingly referred to as Marvin for a while... Having a pain in all the diodes down my left side, at least I could laugh at it... but they never worked out why my left side always had some pain.

I think 'the fog' started to become apparent in my mid twenties, even had brain scans looking for abnormalities, but nothing found, which I guess now is no surprise, I just wish I knew about Fibro twenty years ago ;-)

You do start to think after a while, 'am I going mad, or is this thing real...'. Just glad in a way to finally have a diagnosis. I seem to switch between both the CFS and Fibro buckets, but lucky t hat I can still work (and have an understanding employer)
SteveT :penguin:
----
Dyslexic Bipolar Aspie. Having 'Fun' trying to decipher the universe every day... and then no energy to actually do it. FMS squared.

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Re: Was your fibro lurking for years?

Postby painprincess1 » Tue Mar 12, 2013 4:22 pm

yes i remember a few years but before i new what it was , thinking god what wrong with me and looking back and thinking of the years i ,spent in and out the dr, everyone laught at me about the dr being my second home , there not laughing now at lest i no whats wrong now, but yes id say a good ten years it was slinking about in the shadows
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Re: Was your fibro lurking for years?

Postby Nellyphant » Thu Mar 14, 2013 8:47 am

It took 20 years of me going backwards and forwards to the Doctors being told I was depressed before I pushed and pushed to get a diagnosis. Current GP finally sent me to see a Rheumatologist and I was diagnosed 4th February 2011 at aged 40. I had an appointment with a Pain Specialist and we tracked back my symptoms to a very early age. The first 2 things in my electronic medical history are 1974 Constipation (age 4) and 1977 migraines (aged 7). Insomnia also started not long after this.

So in answer to your question, I have been getting steadily worse over my entire life.
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Re: Was your fibro lurking for years?

Postby binty » Sun Oct 06, 2013 10:35 am

I am 39. Been diagnosed for approx 3 yrs. had problems for approx 12 yrs but can also relate to problems I had when I was growing up that are familiar with FM. I had unexplained knee problems, abdominal problems etc. I do believe that it can be related back to childhood but nobody really knew about chronic pain then. They don't no much more about it now. There are still many non believers in the medical profession.
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Re: Was your fibro lurking for years?

Postby Purpledot » Sun Oct 06, 2013 11:00 am

This is so interesting.

I was asthmatic as a child and would suffer from at least 4-5 horrible chest infections/bouts of bronchitis every year, when I would literally be in bed for a week. I remember at those times going back to school after being ill and feeling so weak and tired for weeks after.

I was a very active child, but can also remember my legs never feeling quite right when running, but not really being able to explain that. I just accepted that I wasn't born to be a runner and that was that!

I can also remember having a lot of minor injuries and taking a long time to recover from them. I particularly remember one minor foot injury that had me limping for over 6 months, but being told there was nothing wrong with it. I still have problems with this foot to this day!

I can also remember loving to swim, but always feeling dizzy and exhausted afterwards.

In my teens, I started suffering from back and neck pain/stiffness, and by the time I was doing my A Levels I was struggling with fatigue. This was all put down to juggling lots of homework with a social life etc, but I can remember not knowing how to lift my head off the desk at times.

Since then my back/neck problems and fatigue have persisted (still unexplained), and I also went through a period of about 5 years when I would have the most horrendous headaches (presumably migraines) and a period of classic IBS symptoms (although I never actually had these officially investigated).

I have had constant balance issues and fatigue for many many years, and was diagnosed in my 20s with ME. I have recently discovered, from a copy of a letter I found lurking amongst my paperwork, that Fibro was mentioned by a Rheumy I saw for generalised pain all those years ago, but I don't remember this ever being mentioned to me, and I was certainly not offered any explanation, support, advice, treatment or management!

I finally received my current Fibro diagnosis last November after seeing a Rheumy for morning stiffness and pain that my GP initially suspected to be RA. This came on following a broken wrist last March.

2 weeks after this latest Fibro diagnosis my balance issues took a massive turn for the worse, and, almost a year down the line I am still almost housebound and am now being investigated by Neurology as I have had lots of other very weird symptoms kick in since then.

This thread makes very interesting reading..........it seems the majority of us have had some kind of health issues since childhood, which would definitely suggest that certain people are predisposed to this kind of condition.

As a side note, I remember my Mum saying that her Mum was always quite 'sickly' and would take to her bed for weeks or months on end with 'chest problems and rheumatism'..........makes me wonder now!
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Re: Was your fibro lurking for years?

Postby Flash » Sun Oct 06, 2013 11:19 am

It shows how very different we all are. I remember posting on here some time ago, there were a lot of us who were totally the opposite.

We are the ones who over did it in our younger years. Very sporty or extremely active and worked many hours in the day in exhausting jobs. Some were extreme sports enthusiasts, long distance cyclists etc. I was a cyclist, long distance runner, canoeist... I worked in building and renovation, farming and car body repairs. As a single mum, I worked in play groups, school, youth group etc and still played rugby or cricket with my lads and walked the dog for miles.

There were many on here then who could empathise with my situation, who were extremely active and having to cope with a gradual loss of energy over a number of years until we are now hardly able to move.

I have always been asthmatic and suffer early onset arthritis and have recently found that the painful joints and constant injuries I suffered over the years may have been due to hypermobility syndrome. I was diagnosed with F/M about 9 years ago and have had the symptoms now for 18/19 years after a car accident and glandular fever.
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Re: Was your fibro lurking for years?

Postby painprincess1 » Sun Oct 06, 2013 11:58 am

yes i would say i had it for years without knowing, i felt ill for years the family would say oh vic at the dr again.i don't no when it started the more i think on it the more i think different things. i no whats made it worse stress wise. but to as it started im not sure, i only no i have had it for many many years.
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Re: Was your fibro lurking for years?

Postby JYB » Mon Oct 14, 2013 7:13 pm

I can't really relate to being unwell as a child. I've had migraine since I was 13 years old. Apart from that I was always very well. My problems began round about the time I turned 50, six years ago. Severe facial pain which no one seemed able to diagnose n now this is under control I'm getting the muscle pains, especially in my legs which are very weak. So weak that I'm worried I am going to end up disabled n in a wheelchair. I'm going to have a chat with my GP, I can't just slowly deteriorate n end up in a wheelchair without a fight.
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Re: Was your fibro lurking for years?

Postby helen.whittaker.125 » Mon Oct 14, 2013 10:59 pm

Mine has been with me a lot longer than I've been diagnosed with it, yes I've been to the dr so many times, had so many tests. As for when I was younger, I sailed , climbed, played rugby , worked myself to death in a kitchen till I made head chef then ran pubs and nightclubs, exhaustion and insomnia has always been a blessing in disguise, right up until I tried to slow down and tried to lead a more normal paced life, then everything started to hurt, it could have been this that caused it, or the abusive relationship, but I'm almost convinced it was after I broke my back during labour it was triggered off.


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Re: Was your fibro lurking for years?

Postby Flash » Tue Oct 15, 2013 11:48 am

Hi Helen. That's what I was trying to show on here ages ago. The amount of us who were very active in sport and work. Much more active than is generally expected. There have been people on here before, who had worked long hours in active jobs, were also running a home and partaking in active hobbies.

I was trying to show that we were not lazy people sitting on our bottoms complaining about little aches and pains as we are so often portrayed. We are people who have been very active, useful to society, hard working and unwilling sufferers.

So many of us are now struggling to cope with this condition and the loss of our old lives, others don't realise, they think we are finicky, weak individuals suffering with something that's "in the head".

As for your disastrous labour, how awful! I'm not surprised you are suffering now.

Take care all. Sue.
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Re: Was your fibro lurking for years?

Postby helen.whittaker.125 » Tue Oct 15, 2013 8:19 pm

I agree with you Sue, when I was diagnosed I looked at my dr and told her I don't want it, I have friends with it, it was the furthest thing from my image of what was causing everything I was horrified shed said it, I've watched friends who are equally active suddenly collapse with exhaustion and pain as they slowly accepted it, it happened exactly the same with me as I've still so much I want to do........ That and nothing scares me more than not being able to do the hobbies I love. I'm already mourning the fact I know deep down I might never fire poi for a whole night ever again, I struggle to do the crafts I love already. I don't think people understand just how soul destroying this illness is nor the reasons it is.


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