hi im new to the group, im so happy i found this group cos i dont have anyone to talk to about how this is all affecting me

can i ask you is there a certain time limit you have to of had this before it gets any worse, cos my doctor said i havnt had it long enough for it too be that bad

ive just been diagnosed with fibromyalgia ive been bad for about 6 yrs now and lately some days i can hardly do any thing with the pains i get them every where, anyway i went back to my doctor to tell him and he said that it cant be that bad cos i was only diagnosed in october. But i told him ive been bad with this for yrs and its not my fault doctors didnt refer me sooner to the rheumatologist soon as i seen him he diagnosed me straight away, its not just the pains ive got other problems too that im bad with but i just need to know a answer to the above question please if anyone can help me. sorry for the long post



35 Replies

  • Hi Tracey and welcome to our forum, which I for one consider to be the best informed and most welcoming there is. There is a lot of information you can access at fibroaction.org which makes very good reading.

    There are plenty of members here who will be more than willing to give you the help and support that you need. We sometimes have fun too, which takes ones mind off the pain and immerses you in cheerfulness and giggles, very healing :-)

    I have had fibro for over 30 years but not properly diagnosed until about eight years ago, though told at 17 I had fibrositis, which in fact is one and the same thing.

    I completely agree with the theory that Fibro can be worse at times than at others, I am experiencing a flare up at the moment as I overdid it last week, but there are times when I feel a bit more energetic. The secret I think is pacing, which I am dreadful at, I always want to make the best of when I'm feeling better, only to pay the price afterwards.

    I hope this may have helped in some way, but I'm sending lots of positive healing vibes your way :-) and there are loads of people who I am sure will help you with their knowledge too :-)

    Foggy x

  • hi foggy thank you for the link to fibro action i will have a look at that, im the same on my good days i want to try and get as much as i can done then i pay the price for it cos im bad for days after, yes you have helped thank you, and thank you so much for the positive healing vibes :)



  • Hi Foggy

    Haven't seen you in a while.

    Hope you're doing ok now. Well, as well as can be expected.

    Sending you gentle hugs

    BM xxx

  • Foggy that was a brilliant intro to the site and Fibro, covers everything nearly and yet still friendly love it clever |Foggy xx

  • Hi Tracey, glad you found this great site, but sorry to hear you have fibrmyalgia. I don't think there is any pattern to this condition and it affects everyone differently. I too was only diagnosed in October last year after finally giving in to the pain and having to stop work. I have been off work ever since and had several increases in my pain medications, though I am still in constant pain, just not the agony I was in previously. My GP keeps telling me that this will pass soon and things will return to normal, given that I am now walking with a stick and can barely get out of the house some days I am not convinced.

    I suggest you keep a diary of where the pain is and how severe it is and then go back to your GP. There is also a lot of useful information on this site which you will find if you click the fibro action butterfly on the top right hand side. Good luck.


  • hi linda i never heard of fibromyalgia till i seen my rheumatologist said i had it, looks ive got alot of reading to do, i am on the sick have been for a number of yrs but not for this, when the change over came for the ESA i was put in the work related part of it but because of other illnesses the stress of having to go for the meetings has made me worse, i was talking to a lady who works for the citizens advice centre about something other than fibro she was asking about what work i was in an i told her i was on the sick and what was wrong with me and that ide just been diagnosed with fibro and she asked me why i wasnt claiming P I P so i just said i didnt think i could then she said i was entitled to it but i dont have a clue where to start with all that so i better start reading, and i will start a diary thank you



  • Hi Tracey so sad that you have a number of things going on, its not fair aye? as you say the stress you have been experiencing has made things worse, my advice all the time is rest, rest, and rest! You must be kind to yourself to start healing. wishing you all the best. Trish

  • Isn't that a ridiculous thing for a GP to say? they don't seem to have any idea. Lots of rest and kindness to yourself is needed. wishing you all the best.

  • Hi Tracey,

    nice to 'meet' you. You will love being here. It's a great site :-)



  • thank you jilly

    nice to meet you too,

    im sure i will love been part of the group your all so kind



  • Hello Tracy I can only tell you of my own experience in fibro. Because it affects every one differently. I was diagnosed after a major flair 3 yrs ago, as soon as I started looking into the symptoms I realised that I had been suffering in a very mild form for years. Everything sort of fell into place. It wasn`t untill I was talking to a neurologist last nov that we sorted out that I had actually had fibro for 25 yrs We all have to develop our own ways of coping but with the help of the people on this site you will have support and advice whenever you need. welcome sue

  • hello sue,

    since reading these posts ive worked out that this affects people in a lot of different ways, and having to deal with living with this for many years, your all lovely people and so welcoming thank you.



  • i have a really good gp but sounds like some of your gp are like mp not in touch with the real world.

  • hi lilian68

    your right my gp needs to learn more about this



  • despite more people being diagnosed with fibro not all gp keep up to date with treatments i didn't get reffered to a pain clinic gp say with other complaints i got too much to work on & they like to focus on one thing so he looks after it

  • Hello Lilian68,

    Interesting to hear you have a Fibro Friendly GP, would you consider adding your GP to our directory on the website so others can access the information about people who have awareness about how to treat Fibromyalgia.

    If so, please email me info@fibroaction.org, with the details of your GP including a short testimonial. Here's the link to our directory if you wish to look at how your information would be featured;


    We would really appreciate the information, for our supporters in your area.

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Welcome Tracey,you couldn't have picked a better site, the majority of us have had fibro amongs other conditions or a long time I've had mine over 50 yrs, each one of us is different but we all know how the other must be feeling, as w have all been there, done that wore the tee shirt so to speak lol, we are good at listening, caring and sharing, so welcome look forward to reading more of your posts, ...sending gentle hug....Dee xx

  • hi Dee

    i am so glad i came across this group, its just what i need with having no one else to turn to so thank you for all the lovely welcomes, its nice to know ive got lovely people to turn to and be able to talk to some one who knows how i feel thank you for the gentle hug :)

    will look forward to more chats



  • (((Dee))) haven't seen you for ages, I'd o hope you're all right and it just that we keep missing each other, and not that you are suffering ?

    Sending loads and loads of positive healing thoughts your way :-)

    Foggy x

  • Hi there foggy, I haven't been so good, apart from feeling down like a lot of us do,I've been unwell with bad chest infection and asthma, how have u been, I have read that you haven't been so good, every time see these floods I Think of you and wonder if your ok, and it seem there's more to come , how are those lovely doglets, sending you gentle hugs and a huge handful of sunshine....Dee xxx :)

  • Hello Dee I am sorry that you are unwell. Fibro and asthma are both horrid illnesses on there own but put them together and add a chest infection on top and oh what a nightmare, keep warm and I hope you soon recover at least from the chest infection Sue

  • Aww bless you Dee, I'm so sorry you've been so unwell, it must be so horrid for you :-( I do so hope that the situation improves for you very soon, I really had missed seeing you about :-(

    The villages has been very flooded, but luckily, not my cottage, although it's on the alluvial plain it seems they didn't build cottages the age mine is on a place where it would flood. the water does come well into the garden, but not the house, which can't be said of our local pub which seems to have to pump out water endlessly, which is odd as it's as old, if not older, but I think water comes in through the cellar :o

    The doglets are fine thank you, Poppie is, as we speak, lying on a cushion in front of the woodburner, talk about the lap of luxury !! :D

    I'm sending huge huge amounts of positive healing vibes your way and masses of snuggles from the doglets :-)

    Foggy x

  • Hi Dee sending you a rainbow of lavender soothing fluffies :) as you mention you've not been too well

    {{{{Dee}}}} fluffie cuddles and hope you feel better soon :) xxxsianxxx :)

  • Hi Sean thank you for lavender fluffies, how have you been.....gentl hugs and a handful of sunshine ....Dee xxx :)

  • Thanks for the sunshine Dee I can feel its warmth :)

    Very lovely this horrible cold morning xx

    I'm moseying on Dee ;) xx

  • Hi tracey :)

    Welcome to the forum, you have come to the right place. Foggy has pointed you in the direction of our Mother site too, fibroaction.org where there is a wealth of information regarding fibromyalgia as well as all of us here, we're quite a friendly bunch that like to care and share.

    I personally cannot state if there's a time limit on this, I've apparently had it for a very long time (20yrs) but like some of the others say I was only recently diagnosed. It dips and dives up and down basically but I do think we are all different so it wouldn't be the same for us all anyway when you take into account the things that aren't fibro.

    Pacing is crucial to successful management I find - but I don't find it easy to acheive :o

    However, like it's already been said, if you're looking for answers about, doctors or even medicines, alternative medicines there are sections on the fibroaction site if you hit the link above. You'll also find sections about all the categories that are there on the right of the screen which is where you can browse through peoples posts plus we are here to help and support if we can.

    We all like to blow off steam whether its with a moan or a giggle so please don't be afraid to join in :)

    Looking forward to seeing you around :) please go back and speak to your GP :)

    :) xxxsianxxx :)

  • Hi kara7165

    Welcome to the site and I sincerely hope that you find it as useful as I do. The site has a lot of useful information relating to Fibromyalgia so I hope that it can help answer all your questions.

    I hope to bump into you again around the forum.

    Take care

    Ken x

  • Morning Kara and a big welcome to our site of helping and mostly cheerful wonderous people" We all sufer with the same pains but endeavor to help each other all we can.

    In answer to your question is there a certain time limit? No no time limit it can hit us badly with a spike of Fibro taking us to our knees at any time. This comment of course can be argued with but as a sufferer it can manifest it self over night with a laze of pain. In these circumstances you are best to take your meds and rest rest rest then it will ease and we start again.

    If you are looking for information on Fibro are parent organisation is fibroaction.org and there are really good help full notices on the right side of the page or click on the butterfly.

    This site is wonderful full of lovely chaps all in the same predicament hope you find your time with us use full.

    Looking forward to your posts

    Best of care to you


  • Hi,

    I too have had it years and was only diagnosed in October last year, that was because I had been under the pain clinic and he realy didn't know what he was treating until one day I actually screamed at him and said I want more tests. There is no time limit to when it gets worse then other times everyone is different! Your doctor is fobbing you off because he doesn't understand it properly. Scream from the roof tops to get what you want that's the only way I found gets you listened to.

    Hope that helps and eases your mind.

    Hope you have a pain free day


  • Hi Kara

    Welcome :)

    Please note that this is only my personal experience that I speak from, not a medical one.

    About 30 years ago I saw a locum doctor who diagnosed me with Fibromyalgia and Chronic Fatigue Syndrome. When I saw my usual doctor again afterwards, he told me that it was all complete rubbish and there was nothing wrong with me.

    Since I was a young adult I've had so many quite serious illnesses it's unreal and I would say that at least 25 of them can be or are linked to Fibromyalgia.

    I've had 7 operations and more surgical procedures and hospital appointments than I can count.

    I was formally diagnosed by a Rheumatologist last year with Fibromyalgia.

    I have only noticed that my Fibro has got increasingly worse since some life changing stresses that have happened to me over the last 3 years. But then it is recognised that stress plays an important part in how Fibro affects us.

    Before my life fell apart 3 years ago my Fibro was pretty steady for the whole time, but I have read lots of posts on here from people who suffer regularly from flare ups in their Fibro.

    I hope this helps a little bit.

    Personally, and it's only my opinion, but it doesn't sound to me as though your doctor knows much about Fibromyalgia at all.


    Blue Mermaid (Louise) xxx

  • Hi, Tracey. Don't really understand what your GP's getting at. Fibro. doesn't get progressively worse, it just fluctuates from time to time. In my experience they used to say it would burn itself out in 2-5 yrs. Don't know if they still say that, as its been 16 years since I was 1st diagnosed! Any chance of you seeing a different GP?

  • Welcome Kara7165,

    You sound like being newly diagnosed you need information so you can discuss your treatment plan with your GP. I am sure as you've been feeling these symptoms for years you would know that sometimes you feel better and other times you experience flares.

    You may find this post helpful;


    You may wish to read the 'All about Fibro' range of factsheets that you may download & then print to take with you to appointments if necessary.


    I hope this helps, you'll find lots of helpful advice as you talk to all our lovely members too but more of all we support each other as best we can as we all live with Fibro.

    Enjoy the community :)

    Best Wishes

    Emma :)

    FibroAction Administrator

  • Hi Tracey, Thanks for post. Welcome to this Wonderful Site. You will meet some fabulous people here with with immense in-depth knowledge about Fibro. I have be fortunate enough to learn so much more about my illness, since joining this Forum, through the other Members, who have vast knowledge and experience, who are only too willing to share their experience, strength and hope with you.

    Sorry to hear you have been diagnosed with fibro but @ least know you know what you are dealing with. I have had Fibro/ME/CFS for over 25 years, like Lruk said it effects everyone differently but it is an excellent idea of keeping a Daily Diary of your Symptoms and how you feel in general, as we do forget things and you can present this to your Doctor when you see him/her!

    I am currently having bad "Flare-up" @ the moment and cannot even get out of bed. Also had to try lots of different Medications before they found the right combination of Meds to get my pain under some sort of control.

    I have been house bound for past 3 years and my husband had to give up an Excellent job with Salary to Match but your health is the most important priority in your life!

    Remember you have had Fibro for 6 years or more before Diagnosis, the symptoms and way of life are still the same, finally you have a "name/description" of it now. It took me almost 7 years to get Diagnosed!!

    Welcome again, one thing for sure, you are never alone now you have joined. Its the best thing I ever did for help and support because us suffers can identify how you feel. No-one else can unless you are unfortunate enough to have it yourself!

    Looking forward to your further posts, keep us up-dated.

    Best wishes, be kind to yourself and take care of yourself too Tracey.

    Sending you positive healing energies.

    God bless. Lynn X

  • Welcome indeed. I can't add anything to that.

    O. . .K. . you lot said it all. . . . .Speechless Badger.

    Strange experience with doctor though.

    Gentle hugs and hopes for improvements. :)

  • Hi Tracey, i too have just be recently diagnosed and also new to this forum, my situation is pretty much the same as you. have been suffering with chronic pain for past 10 years and was always diagnose as lower back pain, which now transpires is degenerative arthritis, one day i just flipped at the GP and then saw a different GP who was younger than the one i was previously seeing who felt my symptoms, were more like fibro, as I was under the pain clinic she insisted that at my next appt I tell him all my symptoms and I did, he also agreed with her diagnosis and consequently then discharged me from the pain clinic saying there is nothing more he could do and has suggested that I am referred to the pain management programme. I still have not adjusted to this diagnosis and have loads of other illnesses also I cant think of a part of my body that is not affected. All there is to say is to try and stay positive easier said than done I know and take the good and the bad days as they come even though it feels like there are more bad than good. light hugs and keep warm especially this time of year xx.

You may also like...