Was it a surprise?

All your fibromyalgia experiences, questions and answers.

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Was it a surprise?

Postby SchroedingersCat » Sat May 11, 2013 7:33 pm

I've been rather taken aback at how many people on here seem to have been taken by surprise when they received their diagnosis of FM. I went to my GP after over 2 years of adding up what was going on and coming to the conclusion that it was probably FM. I mainly went for the peace of mind that blood tests and X-rays along with expert opinions can give that it's not something worse i.e. life-threatening or terminal. The GP agreed, and the neuro, physio and rheumy he referred me to all agreed. I wasn't looking for support, though it was offered, just confirmation that it was I suspected. I already knew two friends with FM, and another with ME, and a number of friends of friends who are fibro sufferers. I've since discovered that a couple more friends (with whom I'd not been in frequent contact) also have FM.

My point is, I knew a lot about fibro before I went to the GP - yet it seems to be almost unknown to some people, and others have heard of it but dismiss it as non-existent. So - was your diagnosis a surprise?
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Re: Was it a surprise?

Postby lolo73 » Sat May 11, 2013 7:47 pm

No mine wasn't a surpirse, I had suspected I had it for years but didn't have the power of my conviction. I went to my GP during a flare up and told him all my symptoms, he did the bloods which didn't show anything and said yes it is probably FMS and then sent me to the rheumatologist who confirmed it. No shocks here.
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Re: Was it a surprise?

Postby Foz » Sat May 11, 2013 7:57 pm

Evening All,

Yes, I was totally surprised as I had never heard of it. After 3 years of seeing my doctor she finally referred me to a Rheumatologist who said he was sure I had RA and here's a 'fast ticket' back to him if I had any issues. After being explained that I could have medication to almost turn off development of RA I was most devastated that 8 months later he changed his diagnosis to FM. As so many others have said they were just handed a leaflet and told to go research.
I know of only 3 other women with FM and when I saw my dentist she said 'oh I know that, its self limiting isn't it?' Which after a while I have learnt that, that answer is only part of it, we don't normally bring it on ourselves.
So to answer your question, that if every other person has heard of it, they are not living in my part of the country.
I do feel very lucky that my doctor is very well informed about FM and I also do not suffer any where near as bad as soooo many on here.
But I do seem to have rambled on a bit :oops: my apologies
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More like a relief that it wasn't something more serious

Postby Cherman » Sat May 11, 2013 8:34 pm

After a year of not feeling right, blood tests, several investigations and 'the not knowing' I was diagnosed in 2009 with CFS/ME and Fibromyalgia - and I am desperately trying not to let it beat me. Although some days are so bad I do forget what I promised myself lol. I was very relieved that it wasn't something more serious but couldn't understand that very little is known about such a debilitating condition that has hugely affected my quality of life and those around me in such a way that sometimes I feel that it would be better if I lived on my own! I am definitely better than I was, say, two years ago, mentally, but physically I struggle on a daily basis. Medication didn't really help me as I suffered terribly with side effects, however, I gave all suggested a go and have yet to find something that benefits me. However, I do know of people who have tried various medications that have allowed them to function and swear by whatever it is they are taking. I have tried alternative therapies that have had positive results, however, I found it difficult to keep up with the cost. Meditation helps manage the condition and is very reasonable, however, I find that it works better when in a group but that means traveling and keeping to an 'appointment'. As I have a young family to care for I opted for the 'just accept it, deal with it and do what you can' mentality. Luckily I have a supportive husband and my children are happy and well looked after. The worst part was having to tell my children that I had a condition as they knew something wasn't right and I really didn't want them to think that this was the 'normal' me. I do feel that we are missing out quality family times, however, we are lucky in that we have one another and I am sure that they prefer me 'here' than not.
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Re: Was it a surprise?

Postby kazak » Sat May 11, 2013 10:04 pm

hi all
after 9yrs of progressively getting more and more symptoms and pain getting worse i went for every blood test, scan and x-ray u can think of. i read up on it and then suggested to my (wonderful) gp that it may be fm so she sent me to rhumy just to have it confirmed. so in answer to ur ? no i wasn't surprised and relieved to have a dx. i like all of u have gud days and bad both physically and mentally. this is a fab site to just rant, gain info or just read evevryone else's story so u realise that ur not alone
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Re: Was it a surprise?

Postby reegogo » Sun May 12, 2013 2:05 am

It was a total surprise to me,diagnosed 10 yrs ago and my sister had already been diagnosed about 3 yrs before me and at the time she was in a wheelchair and I was in total denial and could not accept that I had the same condition as I was only really poorly about 2 weeks a year at the time and put the aching down to sitting in chair doing office work for 8hrs a day,now different story as my condition escalated 3yrs ago after a small stroke and am in constant pain on many meds including Morphine and in constant pain.
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Re: Was it a surprise?

Postby whoami » Sun May 12, 2013 4:36 am

The diagnosis of fibromyalgia was not something I was familiar with.

I was glad to find out that there was a reason for my situation not changing.

I had an accident at work, head and neck injury. The pain, stiffness etc did not disappear when it should have. In fact, some of the symptoms were getting worse.

The conclussion was that the accident triggered fibromyalgia.

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: Was it a surprise?

Postby daddyvic » Sun May 12, 2013 9:40 am

It was a bit of a surprise as I had read up on fibro but it seemed to me that it wasnt likely as it doesnt seem to affect that many men. I have suffered with increasing pains all over for the past 15 years. Have had major surgery on hips but this made no difference. I spoke to my gp 3 weeks ago, he carried out some tests, looked through my history and then diagnosed fm. Been on morephine for past 4 years but hurts bad all the time. But as others have said I just tell my self to stop complaining and get on with it. Oops sorry for going on a bit!
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Re: Was it a surprise?

Postby FinkyDink » Sun May 12, 2013 5:30 pm

Yep, I had never heard of it and although I had a lot of different illnesses, I had never thought to put them together.

I also was shocked when I read up on it, as the rheumatologist had made me believe it was curable, and I was devastated when I discovered the truth.

Fortunately, I have a lovely GP, she isn't a fibro expert but she does research and help me out.
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Re: Was it a surprise?

Postby painprincess1 » Tue May 14, 2013 5:18 pm

i had no idea what fibro was till dr told me i had it. u have to remeber not everyone knowns everything,im sure there illness out there your dont no about. also as it can take years to find out your dr might send u foe tests for everything under then sun first.
smiles and the world smiles with you. cry and you cry alone.
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Re: Was it a surprise?

Postby SchroedingersCat » Tue May 14, 2013 8:09 pm

I didn't intend my post as criticism, Painprincess, I am just curious.
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