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The UKFibromyalgia Forums • View topic - Can fibro flare up and down? Doctor diagnosis confusion!!



Can fibro flare up and down? Doctor diagnosis confusion!!

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Can fibro flare up and down? Doctor diagnosis confusion!!

Postby Laurendhall88 » Thu Jan 15, 2015 12:56 pm

Hi all,

I am new to fibro, here is a bit of background on me. After I had my second son just over two years ago I had about 6months of pain, joint, abdo, tiredness, irritability, really sensitive skin, numbness in fingers, headaches/foggy head and generally body stiffness. I have health anxiety also (worst combination ever) so new baby and health anxiety my doctor put it down to stress and post natel. I had ultrasounds, blood tests etc at the time all fine. So I then had about 6-8months of a few ache and pains but nothing really just thought it was due to lack of sleep from baby.
Then a year ago I had to have an mild operation but after that I again had some similar symtoms but nothing as bad as last time. I then was fine again for 4-6months and then I start to experience the turned, fog, headaches, chest psin again. Doctor says might be that I am anemia still, tests show fine. This starts to affect my work and I have to have one day off every week or so. It gets better then 1 month later it comes back however starts with what I can only describe as urine infection but it's not Doctor tests, urine infection symptoms I now have all the time. So now for the last 4 months I have suffered with bowel related issues, knee and elbow pain, head sensitivity, numbness in fingers, random painful skin patches on my arms, ankle pain, chest and heart burn, fog constantly with or without the headache, so many mouth ulcers constantly and so tired!
So again after the same but more tests as previous big flare up a few years ago all comes back clear. However awaiting colonoscopy. My mum has been sure I had fibromyalgia since my son was born but doctors kept shrugging it off. So the gastro that I saw a few weeks ago says to me he thinks my health anxiety plays a part however he thinks it all steams from fibro but he felt I didn't need to see a rheumatologist yet as he felt I only had flare ups and not full blown fibro so a diagnosis may be difficult.

So from you lovely people who have been diagnosed, what is your opinion? I know you get get fibro flare ups but I thought that was just worse pain not going from almost nothing to episodic pain.
Any suggestions? Should I push for a rheumatologist referral and get there views?
Just came out of the appointment happy to have found an answer but confused as havnt actually been diagnosed so don't actually know really if I have it or not!
Help!!
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Re: Can fibro flare up and down? Doctor diagnosis confusion!

Postby MissGems73 » Thu Jan 15, 2015 2:41 pm

if i was in your situation i would ask for a referral now at least you know one way or the other then :)
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Re: Can fibro flare up and down? Doctor diagnosis confusion!

Postby divingforPearls » Thu Jan 15, 2015 3:58 pm

Hi, I'm sorry to hear about your troubles.

I'm 41 and fibromyalgia started when I was in my mid 20's. Back then, I didn't realize what is was, and I was carrying on as normal, which would increasingly leave me in immobilized agony. Then I would be OK after a month or so and go for a long walk or something = immobilizing agony. Over the years, sometimes this would take a week for the pains to lessen; only a few times has in taken months. The thing with fibromyalgia is, that it is really hard to find any rhyme or reason for the flare ups or their intensity. Sometimes lack of sleep has done it, sometimes over-excercising, sometimes 'stress'. I will tell you one thing though; I got married last year, and danced for a good hour and a half, fully expecting to be in pain the next day, but rationalizing that it would be worth it. I was NOT in any more pain the next day; on my wedding day I was ecstatically happy and surrounded by supportive family and friends. Flare ups - or lack of them! - are very weird things. Trying to understand your limits/ triggers, and listening to your body, is a big big part of managing this condition. Sometimes I can walk for half an hour and be OK. There have been months at a time when I seem to be doing quite well...but then...Flaring up and down is exactly what fibromyalgia does. Good luck with managing it...don't over-do it, be gentle with yourself, if yoga or swimming help, do that - a bit!. You have people that understand what you're going through right here.
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Re: Can fibro flare up and down? Doctor diagnosis confusion!

Postby denys » Thu Jan 15, 2015 4:06 pm

We cant say whether or not you have fibro but in answer to your question others have said they have had periods of relief before being struck with fibro pain again.

In my case I have never had pain free days, but fibro is unpredictable and affects us all differently, so it could be possible to suffer in the way you are. As another member has said, I would insist on a referral to get a definitive answer if possible

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Re: Can fibro flare up and down? Doctor diagnosis confusion!

Postby Patsb » Thu Jan 15, 2015 4:53 pm

I've also wondered about flare ups as my pain is constant :-|
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Re: Can fibro flare up and down? Doctor diagnosis confusion!

Postby Gracious » Fri Jan 16, 2015 2:24 am

Laurendhall88, people experience fibro in various degrees and these can change all the time. Some people can manage to work full time with self/pain management, others part time and others not at all, some are complete housebound. You can also fluctuate between these throughout your life too.

On my assessment I had been using pacing to help reduce my pain, a term familiar to anyone with fibro, chronic fatigue or other chronic pain conditions. This meant by the time I saw the specialist, I was looking rather well not just physically but on paper as I was taking minimal meds. But it was my history and the consistent normal result to test, plus the 18 point trigger test they carried out, that was all taken into consideration at the time of my assessment that lead to them confirming I had fibro.

I thought I had fibro 13 years before my diagnosis, but was told I was not to worry myself it was just the stress in my llife that was the cause. I wished I had pursued it further at that time, instead I had to wait till I was at rock bottom before I was finally listened too.

You have enough background to request the referral. You can only ask and if you do get seen and they say its not fibro then at least then you can rule this out for the time being and you can pursue them to get more help with the anxiety. I say the term "time being" simply because sometimes it can take a few referrals and years to get a final diagnosis.

Took me 23 years to get correctly diagnosed. All that time I was told it was stress, anxiety and depression, despite the constant muscle spasms, continous migraines, loss of use of my left arm for 2 years, unable to walk for periods of 3-10 months, extreme fatigue etc etc. My advice just keep pressing for more help and ask for the referral.

Hope this is of some help.

With loving kindness
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Re: Can fibro flare up and down? Doctor diagnosis confusion!

Postby dazzleship » Fri Jan 16, 2015 9:05 am

I've had days in the past where I was almost pain free and I'd start to wonder do I really have this. But inevitably shortly afterward it would start up again. So I think it is possible for you to have times when you are pain free and times when you are not. As we often say here, everyone is different and fibro affects us in different ways.
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Re: Can fibro flare up and down? Doctor diagnosis confusion!

Postby TNK* » Fri Jan 16, 2015 12:13 pm

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