My diagnosis fibromyalgia

I eventually told my work friend that I have fibromyalgia, as I'm always so tired and in pain when at work. A couple off weeks later she said you know that thing you have, I red up on it and it says its all in your head ,and a lot off people say its all in your mind. She virtual said I'm making it all up ,I said its not in my mind it is true ,she said I'm not saying I don't believe you. No wonder I don't tell anyone that I have fibromyalgia. Even my husband didn't say anything when I told him when I was diagnosed by my rheumatologists. What do you do when no one believes you are suffering , you get more and more depressed and keep everything to yourself.x

23 Replies

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  • I am seen by a Neurologist, a consultant of many years experience he knows this is real and treats it as such. If you look it up on " Dr Google" you will find loads of misinformation about Fibromyalgia, there is a certain type of person who will merrily home in on this whilst ignoring all the research articles because they are basically ignorant souls who merit none of your time at all. Do not give this person any power over how you feel they wouldn't dream of going up to someone with any other illness and proclaim it to be all in the mind. Take no notice, you will never change their opinion. Lou xx

  • Thanks Lou.x

  • That's right, Lou! There is so much research out there now, even proof that it is a neuro-immune disorder. People who say it's in our heads need their own heads examined - even the ignorant doctors who say the same thing.

  • I suppose if you had been quick of the mark you could have replied:

    "Well thats not what my consultant thinks,,, where did you get your medical degree!"

  • You can request information leaflets from here, then you can give your so called friend It as a present :) XXX

  • it is all very easy to say the problem is in your head, there are many on this site with fibromyalgia who would disagree. In my view the " experts" have yet to come up with a test which will help in the diagnosis let alone come up with a treatment that is effective as a cure, as such we end up with an illness which becomes chronic and greatly lessens the quality of life that we have. Much more work needs to be done and awareness still be increased of a very debilitating and isolating condition.

  • Get rid of them!!! Ha x

  • Ohhhhhhhhh I would oh had a BF aka beeppppppp fit! As I cannot swear HA.

    I do explain to people if they say anything along them lines to me - so for instance my back kills but my mri says everything is fine it's muscle pain it kills and my brain is saying something is very very wrong.... But structurally my spine/back is fine. That seems to help them more. Untill someone once said have you ever thought about being hypnotized then I did respond with are you shite ing me! LOL x x

  • Many thanks to everyone for your kind reply. I did get a leflet from pain management on fibromyalgia I wish I still had it I would of brought it in and given it to my friend.x

  • Have one from here sent to her address :) x

  • I worked with people who were blinkered especially of other peoples suffering and would make things up about things they didnt want to understand. Some of our customers had Fibromyalgia (long before I found out I have it) and my work colleagues would say such awful things about these people it would make my blood boil. When I found out I have it I took as much info as possible to give these fools and left it to them if they wanted to open their minds to knowledge and understanding. I can no longer work so dont have to worry about what they think anymore. My family understand and that is what matters to me. Gentle hugs Joolz.x

  • Hi Laura. . May i just say on here you have people who do understand and you can call friends...unlike the other person you called a work friend....pain from fibro is hell you are sometimes really lucky to find a medication that helps but most of us just "survive" some of us have support from friends and family. ..but I must admit that I would even question someone if i didn't have it / know about it.

    We have to be honest ?.day 1 we can be ok day 2 we can be good day 3 be in bed day 4 back to good again..i do think it is hard for anyone to understand fibro..as with mental illness...we all say it takes someone to eventually diagnose us which to me says doctors even struggle ?

    Please don't think i support people who question us but it is a hard disease. I hope this message is understood as i am babbling?.confused myself now.

    Anyway I do hope you, me and all other fibro sufferers can find relief in each other andwith meds helping...who knows maybe in years t come it can be prevented/cured.

    Hugs to all x

  • Many thanks for your message everyone is so nice on here, and yes it's nice to know that people on this site know what we all go through. X

  • Hi Laurakim ......I would have been tempted to say an exaggerated "reeeaaallllyyyy....gosh, where did you find such rubbish? Its a shame such people dont read the NHS website (if you are in UK) and get their facts straight" ....and walk off shaking your head, mocking the stupidity of people in medical matters! In other words leave her (and anyone else in similar mode) feeling stupid for believing and talking rubbish!

    I find it helps to be confident in myself that I can speak knowledgeably about the illness both in exactly how it affects me and the illness in general. ...tends to silence the misinformed! If you yourself have any doubts about the validity of the illness I believe this will come across to others who will pick up on these self doubting vibes and only add to them. Be certain in yourself and that should silence any doubters!

  • I am so genuinely sorry to read that and may I add my support to you just like the other respondents. Fibro is a real and genuine condition that is a debilitating illness that affects many sufferers around the world. They, and we, understand exactly what it is like. I want to genuinely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • laura ~ Maybe your supposed friend at work could speak to some of our real friends here on this Forum who are now in wheelchairs about whether THEIR Fibro is all in THEIR HEADS!? Bet they would have something to discuss ...

    And I imagine you now see what kind of "friend" she is. I might not entrust her with confidences, nor talk with her regarding anymore of my personal matters ... since it appears she is unbelieving (even tho' she denies it) and is not supportive.

    It is difficult, but you will find many friends here on this site, and you can always seek and find help and support when you need it ~ even a few laughs are here to cheer you up when you are down! Soft hugs for the pain, bk

  • Hi Laura. Its a long time since I have written on this site. I was diognosed with Fibro and CFS about 5 years ago now. Previously having been misdiognosed with Rhumatoid Arthtitis. No one in my circle of friends and family had heard of FM including me. Most just didn't really take any notice of this NEW name I was giving to my "supposed" pain and occassional bouts of immobility. Then a friend of My Mother's came out with the fact they they had FM and suddenly I was believed. However they seem to only have pain in their back and still carry on a relatively active and mobile life. I was working full time until 2013 when I was determined unfit to do my job as a Pre school teacher. Luckily I had just about reached State retirement age. For the last 2 years mainly due to a couple of stressful episodes in my life.(My father dying of cancer in January one) my FM has escallated to the point that my mobility has been so compromised that I have now been given PIP. My mother however, doesn't seem to understand that this "thing" is very insiduous and gradually not only undermines your health. Chronic pain is very debillitating. But also it seems to be progressive at varying degrees too.

    When people can't or wont understand what FM is I give them a parralell. I say it is a bit like having chronic arthritis and MS. My husband has MS and actually the degree and range of problems and disabillity is very similar to FM. Once I have given those two diseases as an example of how FM affects me, some people seem to get it and are much more supportive. 33 years ago when my husband first develloped MS there was no way of diognosing it either and for years we struggled on with different names for it. It was a particular agressive type and as such he soon became disabled to the point of using a wheel chair and 29 years ago opted out of family life and went into a nursing home full time. On the other hand a friend of mine had MS and went into remission and had very little trouble from her MS since. I am giving this example as how diverse MS can be and also FM . What one person has to put up with on a daily basis can be so much worse than another person. Also different life factors have a huge impact on FM too. There was a very interesting article on FB last year that listed 200 side effects of FM. I scored 99%. If you can find that article. Or another similar and go through and check all the ways it affects you and next time someone questions if it is ALL in your HEAD, then just show them what you have to go through on a daily basis. They may wonder at the end of it how you manage to cope so well and hide your pain so well. Sorry to have rambled on so, but I too have suffered with friends and family not understanding. Many have never even heard of FM. So a way of enlightening those arround us is a step further forward to getting it made as high profile as MS. After all it does affects us in very much the same way.

    Hugs to all SUEJAY

  • Many thanks, for your lovely post. Much appreciated.x

  • I'd like to thank every one for the lovely replies ,I'm so glad I have found this site . Thankyou all. Xx

  • Dear LauraKim

    I wish I could tell your work 'friend' how this all feels. Please ignore the remark, tell her yes, of course, I agree. Thank you for the information. Unfortunately that is what happens. You will get emotionally stronger as time goes by and learn to keep this to yourself and just share with people that are really your friends. I learned to pace myself and not get upset unnecessary.

    You are in all of our thoughts.

    With true and honest Love

    Nita7

  • I know exactly what you mean. My ex "friend" whom I worked with made comments how her father who was in his 60s was riddled with arthritis on loads of medication and still went out to work and how you've just got to carry on and grin n bare it. WHAT A JOKE she made me furious. I can barely climb out of bed in the morning. Got arthritis in my neck can'take turn my head some days feels like a fist stuck in back of my neck. The fibro gets me down so bad I have awful days husband doesn't understand though he try. Had a lipoma removed from my shoulder last week in the hope it would releve the pain in my arm but it hasn't done much really. These narrow minded ignoramuses need to get on this site and read up a little they might learn something 😠

  • Reading all these posts , with people in so much pain is awfull , just wish there was something that could be done.x

  • Hi Laurakim,

    I'm sorry you are hitting the ignorance that the rest of us have hit as well. Unfortunately, your workmate isn't much of a friend, but you will find good friends who are not judgmental or ignorant about fibro, who will encourage you and not belittle you, like those of us here. And there are others out there who will be true supportive friends. Don't give up.

    Best wishes.

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