first timer

Hi everybody. im sandy and its great to have you guys to talk sound great people and very informative.. I feel so alone in all this but realize your out there suffering too... I only wish I could wave a magic wand and take all your pain away...bless you all..

I've had fibro since 2010.. it was a sloppy diagnosis from my doctor and at the time I remember thinking is she making it all up.. I get no support from my local gp at all they are a waste of time... My pain is a living nightmare... I go to the hospital every 4 months and have lignocaine infusion through my pain management team.. This helps with the pain about 30% and last for a couple of months.. and then I have to wait till then next apt and so on... Theres nothing else out there which helps with my pain, some days are unbareable... I also have hypothyroidism which apparently fibro is a symptom of .. this in it self is a illness that has taken over my life and changed everything in my life...Any advise would be mostly appreciated.. is anyone claiming disability with fibro... I haven't been able to work for 2 years now..

look forward to your replies...

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26 Replies

  • Hello Sandyandpaul,

    Welcome to our FibroAction Community!

    I have been living with Fibro since 2006 and I haven't been able to work since 2007. I get ESA & DLA (which will eventually migrate to PIP). If you feel you need to apply for benefits but think you will need help there are options to consider, whether you have an advocacy service near you and discussing your individual circumstances with the Citizen Advice Bureau about what you can claim & also help with the forms,

    Here's a post about Advocacy;

    You can also contact us once you know what benefits you may be eligible for and we can provide you with some information with may help, please do email me

    To discuss your treatment for Fibro, it sounds like the infusions are providing temporary relief and whatever you are taking isn't helping your pain experience. I would consider looking at our website to see the recommended evidence based treatments for Fibro are available. FibroAction have the Information Standard certificate as does the NHS and means the information we produce is clear, accurate, balanced, evidence-based and up-to-date.

    I would consider making another appointment with a GP that you feel comfortable with and discuss this information further. You can download the factsheets and easily print them for reference. Here's a FAQ which may be helpful;

    I think you may find our whole series of 'All about Fibro' helpful so you have increased awareness of the condition as I believe an informed patient can be positive and assertive to get the treatment they need.

    Please can I also say that Fibro is not a symptom of Hypothyroidism and Lindsey Middlemiss, Founder, Trustee & Director has previously stated the following;

    Thyroid issues should be ruled out (or isolated) before a diagnosis of Fibro is made. Does this always happen? No, so some people are mis-diagnosed. Does that mean that Fibro is hypothyroidism? No.

    Having said that, having ANY chronic condition seems to increase your risk of having Fibro. This has been especially studied with the rheumatological conditions, such as RA or Lupus, but it also discussed by experts in relation to many conditions, from hypermobility to endometriosis.

    Fibro is the end result of what can be a long process in some people. The over-stimulation of the Autonomic Nervous System - that leads to poor response from that system, central sensitisation, disturbed sleep, low levels of available dopamine and from there to the many symptoms of Fibro - can result from any extreme or long-term stimulation of this system (anything that triggers your body's fight-or-flight-type mechanisms). In some people this is linked to a long period of emotional stress, such as an abusive relationship, in others it is linked to compression of the cervical spinal cord, in others it is linked to trauma and in others to a pre-existing condition (even if the Fibro diagnosis came first). If you have a chronic condition, especially one that is uncontrolled, your body is under stress even if you are not aware of it

    Apologises for the long post but I feel it is important to quote Lindsey as this misconception is not accurate information.

    I sincerely hope you find better treatment for your Fibro as I have been there and it does feel like you are battling on and on with no help. I am sure others will comment and also welcome you , please do read & comment around the community forum as you get to know our members. :) I am sure you'll settle in very well !

    Best Wishes

    Emma :)

    FibroAction Administrator

  • thank you so much emma for all the information you have sent me.. I will indeed act on your time is most appreciated.. best wishes sandy

  • Hi and welcome sandy. I hope u find this site as welcoming as I did when i joined. Will talk more tomorrow, school lunches to do, phone dying. Big, Gentle, Hugs, Julie.

  • thank you Julie for the gentle hug (needed that) look forward to chatting to you soon

  • Hi Sanyandpaul

    I fully endorse what Emma says and Welcome indeed. It's a very caring if sometimes loopy group.

    You are having really tough time and I can only sympathise. You have a pain management team which is good, and you are not alone which is also good. Feel free to moan cry or just be silly, all without inhibition. There's usually someone else awake too, so don't worry about the time of day.

    Gentle hugs. Another Paul

  • Nite . nite paul

  • thanks paul for that ..

  • Speak for yourself Mister Loopy x

  • :D Always do :P

    x x

  • Hello just wanted to say welcome to the site before bed time. See you tomorrow hugs sue

  • Hi there and welcome to our lovely forum, it is, what I consider to be the best forum about for support advice and nice kind people with a wealth of knowledge to share, Emma has given great info and as the others have inferred we try to add a touch of lightness and laughter which can be very healing, to our days.

    I hope you join in, and feel free to ask anything if you need help, that's what we are here for, or if we are having a jokey day and you want to join in, please do :-)

    Sending lots of positive healing vibes :-)

    Foggy x

  • Hi sandyandpaul

    I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read that you are suffering with this horrid illness.

    I think that you have been given some wonderful advice from Mdaisy, so I don't think there is anything I can add to this. So, I will just offer my sincerest welcome to the forum and I genuinely hope that you find it as useful as I do.

    All my hopes and dreams for you.

    Ken x

  • Morning Sandy welcome to our quite marvelous forum! We certainly do understand where you are coming from as we all suffer with Fibro and other illnesses. The group is really supportive and there is always someone on board to chat with which is such a marvelous bonus, you no longer need to feel there is no one who understands the pain you are in.

    There is always useful information at our . Looking forward to chatting with you.


  • Hi gins. How are you? have you been quiet or have I been dopey?

    Be careful how you answer that :P :P

  • Morning My Friend dopey no I have been in the land of Godiva :) not me I hasten to say.

    I am Partially here to day but will disappear soon is there anything I can help you with? Be careful how you answer that :)!

    xxgins :) keep smiling

  • cheesy grin back. Still laughing at Alex's mutt :D

  • Good morning Sandy, well it looks as though the owls and larks have beaten me to it and have given you the info on the forum. so I`ll just say welcome once again. :) sue :)

  • Morning Sue.


    Afternoon Sue :P

  • Morning Sandy! I was diagnosed in Dec and have found this site JUST WONDERFUL!!!!!! With regards to your Dr, I think you need to change to one that is more understanding of fibro( if its a medical center with lots of doc's) Ask the receptionist who you need to ask to do this! Once you have a good Dr behind you you will feel much more at ease with any questions or medication you need!! My Dr is fab and I know I'm lucky to have her! But you certainly don't need to go every time you have a question, I ask what people think on here first (unless its really important to my health) to see what they think, quite often someone else has/or had the same and will offer advice. Oh yeah........WELCOME!!!!!.... Much love.......Ninja..xxxxx

  • Hi sandy, welcome to the site, it,s the best! Good wishes to you xxx

  • Hi,

    nice to 'meet' you.



  • Hi Sandy,

    Just like to WELCOME you to this wonderful Site. The Members on here can empathise/sympathise (me included) with the pain and discomfort you are going through.

    Sorry to hear you have been diagnosed with such an insidious illness, but like I said the support, care, kindness, invaluable advice, I have had since joining is tremendous, join in the "banter!!. or what ever you choose to do

    You need never feel alone, you can posts any questions

    I can see Mdaisy has put on all the information you need to find out more.

    I cannot Praise the Members enough for all their continued support, shown to me. Hope you get as much out of this Site as I have/do. Looking forward to hearing from you again.

    In my thoughts and prayers.

    Sending you Positive healing energies.

    God Bless. Lynn X

  • thank you lynn for your words and thoughts..x

  • Thank you Sandy for your reply. It is great to have you on board, sincerely hope you find to answers to some of the questions you have? I am sure you will.

    I am relatively new to this Forum but I personally I have had tremendous support, help, kindness and advice, especially to a recent "Post". I was "BLOWN AWAY" with all the kindness and support with the replies I received, just amazing!

    I sincerely hope to hear from you again and hope you get as much out of this Site as I do.

    I hope your not in too much pain and discomfort today. Take care. Sending you positive healing energies.

    God bless Lynn X

  • Hi Sandy,

    Welcome to the forum. It's a great place to come and is full of friendly people :)

    Re disability, I have been claiming DLA for just over a year. My doctor suggested I apply. For the first application I was 'helped' with the form (not by anyone who knew fibromyalgia as such) and awarded the low care rate. However, in the second application (when I understood my condition better and was more informed to answer the questions myself) I was awarded high mobility and medium care. As my condition remained the same over the two years, it seems it's all down to how you fill the form out me thinks.

    If you do apply, one thing I would do is to emphasise how the chronic fatigue affects what you can do. The fatigue is what stopped me from working... I'd put up with the pain for years, but eventually I just couldn't function due to the fatigue and now haven't worked for just over three years. Of course it's important to discuss your pains too and Include as many other symptoms as you can.

    I hope this is of some help. Good luck if you apply. They did ask my doctor to write something too (he pretty much listed what I had), so hopefully you have a doctor who would do this :)

    Take care,

    Pip xx

  • hi sandy

    welcome to the site you definetly need to change your gp as it makes all the difference if you have a helpful gp mine is just great .gentle hugs xx

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