Hi, After months of blood tests to rule out everything including Lupas, my GP has now mentioned Fibromyalgia after reading up on the condition it could be that I am suffering from Fibromyalgia, however I have to wait for another two weeks whilst more blood test are done, checking by blood count ,again, inflammation levels again and liver function.

I have pain in my neck, and have difficulty in turning my head, when bad I have swelling around my collar bone, pain in my shoulders and can have spasams in my back, also have have pains in my rib cage the pain now is progressing into my hips on my bad days. I constantly feel exhausted and in a morning when I get out of bed I am in agony and feel like an old wreck! and not slept! I am always cold.My concentration can be poor and my memory is shocking.

I suffer from headaches and migraines, ibs and have hypothyroidism. I just want a definite answer as I have had a bad week again!

19 Replies

  • hi loubiloo, sorry you are having a rough time.

    has your gp referred you to a rheumatologist? any seem to also double as fibro consultants. they can access more services than the gp can.



  • oops! any=many

  • Hi there,it certainly sounds like you have fibro.When I first became ill 8 years ago I also started getting pains in my neck,back,rib age and had aweful problems with sleep and tiredness.I just kept going to my g.p and insisting that there was something wrong,they finally took me seriously when I couldn't move my neck from side to side.Ask if you can be referred to a rheumatologist as you need to get a diagnosis.This site is very good for advice,info and support,it has helped me.I really hope that your g.p refers you and you get a diagnosis and some treatment soon x

  • Hi haribo36 thank you for your comments. I have suffered a while now but it has been masked due to having a shoulder problem which resulted in me having to have two operations also a series of steroid injections. I have been to the doctors several times in between and they have said it was my shoulder causing all the pain and at one point they thought I had costacondritis - inflammation of the rib cage but now my shoulder is "fixed" I am still having loads of pain discomfort and tiredness the doctors keep asking if I am depressed, I wouldn't say I am if I was it due to the pain I am constantly in! I have been on amitriptyline for about 2.5 years which they gave me for my shoulder. I am trying so hard not to give into it at the moment . I will speak with my doctor in two weeks after the next set of bloods are done . Thank you again, loubiloo.

  • Good luck i hope you get something better for your pain soon, hang in there..onnaroll

  • hi, sorry to hear you are suffering so. i have been trying to find an answer to why i felt like i had flu all the time. i have been diagnosed now with fibro, i am now going through the process of pip allowance but i do feel that people still dont see it as an illness/ailment. its an invisible "thing" very frustrating

  • hi dorreen your so right

  • Hi. I have just joined today. I have had fibromyalgia along with several other conditions for over a year now. I am attending occupational health as it has been recommended I apply for early retirement due to ill health. I had an ESA medical assessment which I have been told I scored no points as I think no one can see or feel the pain you are in. Will to try to appeal. I understand how frustrating this all is. Any advice. Take care.

  • Hello Ef59,

    Welcome to the FibroAction community!

    I hope you find it to be supportive & informative as members feedback seems to suggest this how they find it to be here in our community.

    As you have been diagnosed about a year ago, you may or may not have read up on Fibro and if you need more information please see our factsheets called 'All about Fibro'

    FibroAction is a UK charity who are raising awareness & making up-to-date, reputable and evidence-based information about Fibro more readily accessible and this is at the heart of what it we do. FibroAction is one of the organisations that have the Information Standard Certificate to ensure that the information we produce is clear, accurate, balanced, evidence-based and up-to-date.

    I see you mention appealing your ESA decision, we can provideyou with information via email which may help you with this, so please feel free to email me

    There are many many members here willing to share their experiences here in the community in the hope it will help others and they try to have some fun posts around the forum to help lighten the mood too!

    I look forward to chatting with you more quite soon

    Best Wishes

    Emma :)

    FibroAction Administrator

  • hi, i applied also for esa. for a long time i too got no points, no one could understand the constant pain of everyday life. ive had a couple of really tuf years, a relationship broke up, which is when i think the fibro started and then last aug i sadly lost my oldest boy of 33, very suddenly.again my fibro got a lot worse and now a month ago i lost the guy mentioned above, he died suddenly. i have l lovely guy but the pain still goes on, and i dont think people truly understand the pain as it cant be seen. only other fibro sufferers know, very frustrating .... but the esa have now noted that i do indeed have a cause. plz keep going it may go your way soon. im now in the process of trying for pip ( the new dla) its hard work.soon it WILL be recognised as a genuine syndrome.

  • Hi

    Thank you very much for your reply. Really sorry to read of your losses. Cannot even imagine how you have been able to cope. Delighted that the ESA have agreed that you indeed have a very deserving case. After having tried on four occasions this year when they just keep on telling me to apply for Job seekers allowance while I am applying for early retirement due to ill health just doesn't work. I do receive dla at present. I wish for the day that someone will agree that fibromyalgia is a recognised condition. Take care xx

  • i know what you mean. i feel that even one of my sisters even thinks ita all in the head. yet my oldest sister understands, a bit. no two days are the same. but the pain is everyday for sure. im on esa and yet i still have to go to our local job club, sit at a computer for 2 hours looking for work i cant do. just sitting still for 2hrs leaves me in pain. sometimes i feel like screaming " when will you people realise !!! " i wish you luck.xx

  • Hi

    Good to hear from you. Ridiculous that you have to get there and back from the job club and then sit for two hours looking at something you know is impossible. My family are all very supportive and only today my daughter learned that her friend from school has fm. Keep up the good work and I will let you know if I hear anything. Take care x

  • Im so sorry you sound just like me, I would so love to hear from anyone who can help with pain relief. Doctors seem to come and go now, they are not much help at the hospital either. Try to help myself as much as I can but feel pretty low at times. They did mention occupational therapy. I wish I had a magic wand t,o make everyone better. DianaBedfordlodgers1

  • i have been given tramadol and ameltryptaline they really help at night, helps me sleep but not much releaf through the day. i find i have to pace myself. i do things when im on a good day. the trouble with that is i often find if i try to catch up on jobs im again in pain, no win situation really. i find sometimes that people look at me as if im misserable but if you have pain a lot of the time then it shows on your face..

  • yes i think you have fm as i have the same pain all over my body on bad days im in a wheelchair its bad pain and no docs seem to no anythink i hope you get it sorted

  • .oh dear sorry to hear that you get wheelchair bound at times the trouble is i have found with doctors is that if you feel you may have something extra wrong with you, they just say" thats the fibro" they seem to encompass every thing down to fibro.

  • Hi,

    It also took several months for me to know what is going on with my body. I still am not sure. My doctor says I have fibromialgia for sure but he thinks I am in initial phase of reumathoide arthritis.

    It took me over one year but I now understand I need to take very good care of myself. I started yoga, massages and allways take my pain medication. Each day is a new fight. We have to learn how to live again and protect ourselfs.

    I hope you will feel better soon.


  • I've had fibro for 8yrs but past 2yrs it hit bad an has destroyed what life I had.I haven't been on no meds for it by any go no matter how much I complain.I do somewhat get relief if I have to go to er I was givin 4mg morphine I never felt so good,it was awesome to be pain free for at least a couple of hrs.I'm looking for a new gp mine just don't do nothing.

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