Not Lupus - Fibro???

Hi everyone, I am new to this site. I have just finished loads of blood tests etc for lupus and they are all negative. I am now in limbo not knowing why I have been feeling so ill and in so much pain, the consultant has suggested I am depressed and or that the brain can alter things and cause things which made me think he thought I was just down but he also agreed I was not imagining it as he can see how ill etc I am but that he cannot diagnose what he thought 'Lupus' as my tests are all negative. That is all very well but now I have to go back to my GP and start again I suppose. I have been so very ill for at least 6 wks now, can't even hardly walk I do not work anymore but if I did I don't know what they put on a sick note then!!! I have heart disease (heart attack at 42, now 49)and am awaiting another bowel operation and have been ill on and off for the last 10 years at least so gave up work. So now I have been taken off the steroids which is good but in limbo as to what my diagnosis is etc, what do you tell people what is wrong with you if nobody seems to know, I feel like a fraud and a hyperchondriac without a diagnosis. Any comments very welcome please. I too have filled in an ESA form and sent it back 3 wks ago and heard nothing yet and that is also stressing me out.


7 Replies

  • Hi Tusk,

    If all other arthritic disease has been eliminated, then you may well have Fibro. As you also have heart disease and bowel problems, I'm not sure why you feel you need another diagnosis to validate you. You sounds ill enough to be going on with, and quite clearly are neither a fraud nor a hypochondriac! As for telling other people what's wrong, why bother? It's really none of their business.

    The depression which often comes with fibro is most distressing, and needs to be treated, so hopefully your doctor will attend to that for you. It often means some months of trial and error to find out which anti-depressant will help you best, and of course you will also need adequate pain relief - this can make a huge difference to the quality of your life.

    You may find it useful to go to your GP, take along a list of your main problems and concerns, and ask him to offer you some treatment options.

    The brain and body are so closely interlinked that stress of any kind can be 'somatised' in other words the body reacts to mental stress by producing even more pain and other physical symptoms, often stomach problems.

    This certainly doesn't mean that you are imagining it, but does indicate that you need to deal with your stress and depression.

    As for the ESA - well, we're all in limbo here! Maybe you could telephone and ask what's happening to your application. It seems to be that few people get the benefits they are due without appealing, but appeals are most often successful, so don't be downhearted if your first application is refused.

    I am sure that you will feel better once you have made some plans for how you're going to tackle your illness in the future. Taking charge of things and being in control is essential in combating pain and despair - but it's hard work!

    All best wishes for an easier future.

    Moffy x

  • Hi Moffy

    Thank you so much for your comments it really does help knowing someone is actually taking any notice of what I am saying. I feel as though I need a proper diagnosis of all my pains and problems as I have been really ill and my family and friends have all been so worried and now they too do not know why I am so bad at present. It would just help I think if I knew why I felt like this. Going to the GP and having nothing to feed back to my family is soul destroying, I have been up and down the Dr's more than ever lately but I have made an appt as requested by my consultant and will if neceesary have some antidepressants I will try anything to feel better but just feel as though it is all being palmed off on being depressed and/or stressed. I find it hard to believe that depression can make my body hurt so much. On and off my legs, feet, hands, wrists are so swollen I look like a walking balloon, I look dreadful, am all muddled up, clumbsy, forgetful, always very tired and in a lot of pain in my back, arms, legs, shoulders, ankles etc, I can't even spell properly or get my words out half the time. I can hardly stand up first thing in the morning I feel like I am 90 yrs old but do not know why. First they said it was polymyalgia (my cousin has that) then maybe lupus but all blood tests are negative so it isn't those, now I am wondering all sorts of things, MS or maybe I am just going mad!! My husband has had 2 wks off work to look after me and I ha ven't been able to go shopping or anywhere for 5 wks now as I can hardlh walk. When will I get better I do not know as I do not even know what is wrong with me and that is one of the hardest things not knowing if and when I will get back to every day life shopping etc. I know I have other serious health problems but these are all new symptoms. It seems to have started in January when i had a folic deficiency but it could well have been before that I don't know but not as bad as this. I do thank you very much for your comments and will see what GP says when I go on 18th June, not able to get to see my GP any earlier, another battle!!



  • Gentle hugs Tusk xx

  • Hi Tusk

    I feel so sorry for you but dont give in stand up to the doctors ive had every test under the sun and they were all negative i even went ub=nder the knive twice so they could take a look i have IBS pelvic infections ear ache ringing in ears dead legs no energy at all arme hands knees neck jaw you name it it hurts But i never give up i checked on computer to learn about FM i bought books and ive learned a lot it causes so many things in your body

    I never let the doctors fob me off and i stand up for myself and say my pain is real i am suffering every day i need help . i recently found a book called fallen from grace its a story about a woman who suffered all her life in agony and doctors told her it was in her mind or depression she ended up in a wheel chair but never gave in untill in the end she got her answers she its a really good read and next time i vist my doctor that book is going with me .

    Doctors will say its depression because thats one of the main things you get with fibro with the constant pain who wouldent dont you feel like its all in your head Firo is a thing thatt to me destroys lives and needs to be reckonised by doctors more . Read up on it see what it causes print off and take to doctors . Best of luck and dont give in xx

  • Make sure your doctor qualified after 1990. Pre-1990, they do not believe in Fibromyalgia. Get a doctor who qualified after this date, and they will support you with a fibro diagnosis, as they believe it is a real illness.

  • Hi everyone, many thanks for your comments it really does make a difference to me hearing rom others who feel the same. I don't know when the consultant I have seen qualified or my GP come to that but it is starting to sound a bit like the 'yuppie flu' saga again. Even now I think there are Dr's who do not believe that exisits. I have looked at a few websites now and have found quite a bit out about FM and I am pretty sure that unless my bloods alter to positive at some stage then I must have FM but I am not sure how long flare ups last or whatever. I have been very ill now for the last 6 wks with no sign of getting better. I usually collect my grandaughter from school, do shopping etc but have not been out in 6 wks now. When I see my GP on the 18th I am not sure whether to mention FM as they don't seem to like it if you diagnose yourself. Anyway hey ho another day today who knows maybe I will wake up tomorrow and feel great!!!


  • I do hope you will feel great tomorrow, Tusk! Like the others who have commented, I can really identify with your feelings. But you really shouldn't feel a fraud. You have no reason to be apologetic towards other people because you are feeling so ill. Your feelings are real and so is your illness!

    Warmest sympathy and good wishes,


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