For those of you who've had fibro a long time

All your fibromyalgia experiences, questions and answers.

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Re: For those of you who've had fibro a long time

Postby islandgirldee » Mon Sep 01, 2014 7:25 pm

I was only told i had Fibro 3 years ago. I was astonished. The doctor was surprised at my reaction when she told me that infact i had had it since 1996! :nono: Not happy! I also suffer with terrible M.E. and a spinal injury caused by a major RTA in 1996 (this is what's brought the whole lot on apparently) where the car i was travelling in was hit head on by a fully laden fire engine , speeding on the wrong side of the road!!! :yikes: :too-upset: The fireman has gone on to greater things, meanwhile i cannot work :-( I have been fobbed off on many an occasion by doctors and even told it does not exist! After battling all this time with no help from anyone i have been referred to specialists...yippee! If you feel any changes in your health act upon it immediately....
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Re: For those of you who've had fibro a long time

Postby whoami » Mon Sep 01, 2014 8:57 pm

25 years and counting......As my Dr said, expect to live a painfully long life!

I don't think that anyone has fibromyalgia any worse than others. Pain can't be measured and judged in people. How our bodies handle pain is completely different from person to person.

Some of us do better with or without meds, exercise or none, other treatments or not. How we manage is the ability to be able to control the symptoms.

I had an accident at work that triggered the fibro. I was going up some stairs, quickly as we do sometimes and hit my head on an overhead pipe. My neck compressed, I fell down the stairs and it resulted in a small fracture in my neck.

I was put on a permanent 100% disability through workers compensation. I have not worked for 25 years.

Over the years I have taken many different drugs. Some of which I feel made my symptoms worse as the side effects of the drug itself was intolerable. I have had different treatments, physio, trigger point injections and blocks. I have attended pain clinics, pain management clinics where you are actually admitted and seen numerous types of Dr's including the mental health clinic.

Learning to listen to my body and respect it, learning to push myself to limits I thought were unattainable pushing with the pain, pushing but listening. Having a close relationship with my Dr. Respecting my medication. These have got me to a point where life is tolerable and quite happy.

I don't feel fibromyalgia gets worse. I think that it is the ability to control symptoms that make it feel worse or a lot better. I can have horrendous days but I usually know exactly why.

Fibromyalgia is not something that is terminal as in it will end our lives. We can learn to live to have a happy, productive, loving life. We have to learn that as things may never be the same, some things may be better. Learning ways to adjust but still enjoy is what helps us have quality of life.

Live your life as best you can. Try to see the positive, maybe even as simple as you learned a way to enjoy something you physically participated in but now appreciate in another way.

We are going to be in pain no matter what,. If we look at the pain and other symptoms from a different angle we may find a way to tolerate it.

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: For those of you who've had fibro a long time

Postby Hannah24 » Mon Sep 01, 2014 9:12 pm


I developed fibro after a car went into the back of mine in 2011. I was in chronic pain with all sorts of other weird symptoms such as severe stomach pain, pins and needles, involuntary body twitches etc...I was lucky that my GP was good. He didn't give me the diagnosis of fibro for some time even though he had mentioned it on my notes because he want to rule everything else out. For a year and a half I thought I was loosing my mind and that something was very wrong. When I got the the final diagnosis I was actually relieved to begin with. However, although it was nice to know that I wasn't losing my mind I don't think I accepted it. I still tried to continue doing things I had previously used to and finding that it knocked me for six. I developed depression and anxiety as I grieved for my old life and my bleak future.

I am not going to lie to you and say it gets better. I am eternally hoping (like many others I guess) that it will go away or a cure will be found. My psychologist confirmed that anyone in our position does need to go through a grieving process to really come to terms with it. It's 2014 and I'm still grieving. As I accept it more and more I am finding my life changing into something I barely recognise. Alongside the small changes there are the big ones. At the moment I am in a real dilemma of whether I can continue working. I have reduced my hours to part time but I am still struggling and have been off sick this year, more than I have been there. The guilt of letting others down, the guilt of not being there for my family (as work takes it out of me), the stress of costs and how we are going to manage financially. These are all current concerns.

Whilst I do feel my life is all doom and gloom, I do work with someone who also has fibro and she 'appears' to manage fine. I guess I don't know what's going on in her life but she always seems so positive and well. Maybe, there is hope out there and I guess that's what we have to try and hold onto.

Take care xxx
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Re: For those of you who've had fibro a long time

Postby Lindilou » Mon Sep 01, 2014 9:19 pm

I was diagnosed in 2010 but had it long before. I was working almost 24/7 in the private care field and I believe that's where and when it started.

Re: For those of you who've had fibro a long time

Postby Junewill2 » Tue Sep 02, 2014 11:25 am

Hi , I have had FB for some years now and agree with what most of us are saying. There is no mild or severe as such no one worse than another as the actual symptoms can change all the time. Different outside influences and illness es scan also affect us all individually. Its a very complex issue hence Doctors haven't a clue how to cure or even relieve it. I don't know if anyone else has heard of a website ? It is worth going and having a read and see if it is relevant to your own symptoms especially for the lady with CFS (chronic Fatigue Syndrome ). Just have a read and make up your own mind but it would be interesting to see if anyone else thinks the same way as me and that there really might be something in what Doctor Myhill says.
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Re: For those of you who've had fibro a long time

Postby zoomie » Tue Sep 02, 2014 3:09 pm

I've had fibro for 20+ years, I worked full time had three beautiful children all while managing my pain. At some points I took no prescription drugs at all (throughout pregnancy etc)
At first I pushed myself so so hard, fibromyalgia was a little known about condition that most thought was "in your head" so I tried to pretend it wasn't there, I'd push past pain telling myself I was imagining it until I'd pass out.
Fibromyalgia didn't exactly get worse, but as time goes on I'm getting add on conditions, Lupus, Rheumatoid arthritis, Restless leg, Renaulds, Wet Asthma, TMJ, IBS.....It's a long list! For the last five years I've not pushed as much, I no longer walk until I pass out, that way I have more time when the pain is bearable but less fun.

Don't know if that has helped answer your question! :)
Fibromyalgia comes in many shapes, sizes and abilities... DON'T DISCRIMINATE!!!!
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Re: For those of you who've had fibro a long time

Postby Theresa34 » Tue Sep 02, 2014 3:29 pm

Thanks zombie x I feel like I'm collecting illnesses too! I very got ibs, underactive thyroid, I didnt have a vit D deficiency but on pills for it, tmj, psoriatic arthritis and the fibro. Waiting to hear from further blood tests if there's anything else. Its crazy :shock: :crazy:
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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