People still think Fibro etc is all in the Mind!!

I am rather disappointed at the moment,I have a very good friend that I look on as a sister .( as my siblings walked away long ago .Because they thought I was a hypochondriac ) she was speaking to me about a person she works with in the holistic med's world. I know that some work or help. Anyway she said that they believed that if they could help me with my depression all my illnesses would just fade away. Did I not agree they were all in my mind!! I actually am not depressed just frustrated that my life has changed so much !

Then the OT lady came to help me with a bed ladder which does not help me as I have no upper body strength. She asked me what my mobility problems were and I said " I need both knee's replaced and I have RA and AA CVFS and Acute Fibro " to which she replied Oh yes but Fibro and CFS are all in the mind" I was furious!!!

People who do not have a clue of what we all go through,should just keep their thoughts to themselves as it does not help for them to form such opinions!!

I am sorry to rant on but all in all I have had one heck of a week and this just tipped me over........

Rainbow hugs to you all and a bit Thank-You for being there x x x (((((((((((( :-) )))))))))))

21 Replies

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  • They should have the pain and all the other problems that go with it.xxx

  • There always will be rainbow no matter how close or perfect strangers... I have finally learnt to grow a skin like a rhinoceros and ignore those who say such things .... Mind you if these so called doubters ever hurt themselves and come a whinging... I take great delight in saying ... Pain.... It's all in your mind...

    Yours evilly

    VG :)

  • Hello Rainbowdancer,

    I can understand exactly how you feel. I once had a part of the Community nursing team visit to take some bloods and she spoke to me very rudely implying I could do things it I wanted to. At the time I was unable to get out of bed as I was experiencing dysautonomia symptoms as my blood pressure would drop as I got out of bed and I would feel very faint.

    She was unable to take my bloods in bed and said 'I will come back tomorrow & you will sit in the chair or you can just get yourself to the hospital for your bloods won't you'. I reported her behaviour to the seniors and asked she never visited again.

    It is so frustrating that the stigma still exists in the medical profession and the general public.

    I am hoping that we can continue to raise awareness so these experiences will hopefully become less frequent.

    It would be lovely not to hear the 'Tender Lady Syndrome' expression ever again and put this stigma behind us.

    Try not to let it upset you any further if possible and I hope you enjoy the rest of the evening.

    Emma :)

  • My daughter was looking after me for 2 weeks at night and she said she thought I should do more for myself,and after that I just struggled even if I needed her help. I have always been a very sensitive person. So she knows I take it to heart!

    Thanks Emma for your thoughts x x

  • Hi

    You expect a certain level of ignorance from the great unwashed but not from so called medical professionals. I must have been lucky as I have never experienced anything like this in my dealings with medics, on the whole they have been very supportive. Except for one cow at the pain clinic who I took an instant dislike to but that's another story.

    As Grumpy says I bet it's a different story when they are in pain and expecting tea and sympathy. If research is showing that fibro is caused by x, y or z then how can it be all in the mind? Stupid, ignorant people are best ignored if possible.

  • Get so annoyed at people like this too. I have a relative who has Fibro she has never been to see a rheumatologist and experiences more fatigue than pain.

    She told me I should not take my Amitriptyline as she rtried that and it made her depressed and I'm wasting my time getting referred to a rheumatologist her words when I told her my GP thought fibro and was refferring me was "What's he doing that for?, waste of time they can do nothing for you" I was gobsmacked but as she was ill at the time, quite seriously with an illness that had been masked by the fibro, I bit my tongue.

  • These people (ignorant) who thinks its all in the mind should spend just one day in our shoes and Im sure they would soon change their mind set.

    Do I want to be like this day in day out,no let up.NO I DONT!

  • So many ignorant people, will put down, ignore or dismiss what they do not understand. With most homes now having internet access, there is no excuse for such ignorance When I come across such people I choose to ignore or dismiss them.

    My own sister thinks she understands, because no matter what symptoms or condition anyone has she always 'knows someone who has that'. Yet on the rare occasions we speak she always asks "are you better yet?" I find it offensive that she knows so little, and really cannot be bothered to find out more. Her choice, mine is to ignore her. Thank goodness I get to chose my friends

  • I have exactly the same issues with my sister. Once she pulled my fingers apart and said its just an age thing. Not only did it hurt like hell but I cried real tears when I got home. She actually said a good spinning class would do me the world of good which is a gym class where you peddle really fast on a bike that doesn't move, you stand up on the bike and peddle and then sit down and peddle faster and faster!! I can't even stand up quickly let alone try and move onto a bike let alone peddle one!! We have not really seen much of each other recently because I think she is embarrassed to be seen with me. I use a tri walker or stick and obviously gained weight. She is a size 6 so I look huge next to her. Whatever I eat I'm told that won't help my condition

    I GIVE up.

    From LucyW who is already at 08:20 this morning in a huge amount of pain and have work in the morning. Oh and she told me not to worry cos fibromyalgia is a virus and it will burn itself out eventually!!

  • Hi Lucy. This is bad. Have you given her any printouts from the web that show what FMS is all about? Particularly some of the stuff that says it could be autoimmune and neurological.

    I had an appt with a different chiropractor a few months ago because my regular one was unavailable. He was head of practice so imagine my surprise when he suggested also that Spinning as a great way to burn off some extra calories AFTER prodding me in the stomach and telling me to "get some of that off".

    XG

  • It's so frustrating , if it were all in the mind, how is it then, that top rheumatologists who have trained for years to get to their positions in their medical Careers , test for pressure points to diagnose it.

    That's actually what I say to folk when they say something like. It's In The mind .

    The other one I use is,, it may be correct in what you say,, as it could be Infact connected to the brain as MS is, so you may be right there.

    Anyone that knows anything about MS know,, it's a terrible condition . There's no arguement as its the brain that is Infact affected. Its all so commonf this mentality , it takes time to get people and the medical priffestion to recognise more that fibro is a REAL illness .

    There is a stigma attached , I've had people say to me,, oh fibro is a label they use when they don't know what to diagnose you with , I just don't let these comments effect me now.

    Big hugs x x

  • Yes, I have also used the 'well, in a sense, it is in the mind, in that it is related to the Central Nervous System, you know, the brain. You see it's about the pain pathways, and the neurotransmitters and .... ' at this point they either fall asleep or start to realise that actually maybe, just maybe, it is 'real'.

    Of course, I also just ignore ignorant people at other times!

    And occasionally I still get upset, but much less often, less severely than I used to.

    x

  • Rainbow,

    Since I joining this site I have felt that there are so many if us who experience very similar frustrations: our bodies, our pains, our foggy minds, judgemental or unhelpful people, etc.

    There are people who will believe what they want regardless of what we try to explain to them.

    Just know that you are not alone, none of us are, and do not allow other peoples opinions to change your outlook. You stay strong.

    xxx

  • That comment has made me so angry,What Stupid woman people like her are ignorant,just one day in our shoes and she would soon change her mind .

  • I sometimes say .. Really .. Must let my gp and consultant know you have the answer it will help so much with thier case load x

  • To all pain is registered in the brain!

    Neurologists will see you with fibro as will rheumatologists.

    Learn to smile it is better than anger and it disarms opponents of any differing opinion.

    I have business cards with the facts of fibro on them.

    You could make one too?

    Think of the positive things you can do to inform others what fibro my algia really means....

    From the Latin fibrous ligaments&tendons ,myos (or similar) is muscles, then algios is pain.

    We know what it is but do others we have to interact with? Help them understand then maybe just maybe we will get better help in return?

  • Hi,

    I hear you and it's horrible isn't it. My physio told me pain was all in my head, literally, as it is where the body registers pain. But to be told that we create the pain because we believe we are in pain, that is so unfair. I like VG's response.

    Hugs

    Jillyxx

  • omggg i bet you was so angry when she said fibro is all in the mind, i,m angry just reading that she said this to you, its hard enough living with just fibro but having all your other problems too your life must be hell at the moment, i think people need to start listening to the person whose ill before they speak and stop being so ignorant, much love to you freind and hugs for all your trying to cope with and i hope you get some things better soon , x

  • I feel for you, this OT should have been reported, I'm so lucky for my OT is so understanding and the medical team in the pain clinic are marvellous. Tell me would they spend so much in expenses etc if this condition was all in the mind???

    Kira x

  • I agree that fibro is not all in the mind but I have to agree that the mind has a lot to do with it. I know I am very sensitive, easily upset and sometimes a bit paranoid and prone to being depressed. I have recently decided that my depression is probably REACTIVE depression rather than CLINICAL depression because I feel so much better if I don't think & dwell on so much. As for the pain and fatigue that's worse if I don't sleep well or do too much also certain foods trigger pain in my joints and muscles such as wheat. It has to be said that we fibromites do tend to be sensitive souls but we must allow that fact to empower rather than defeat us. In a tiny way knowing this about myself kinda helps because I realise it's not my fault its just the way I'm wired and is due to the way I've been programmed thru my upbringing.x

  • Thanks everyone for your reply's x It is very hard to take no notice but I do try!

    When I could walk and drive I could live with it but now I am so bad I have to be helped to wash and dress, it is hard. My husband at the moment has a very bad back and is on morphine so he cant dress me. So I am living in my summer dresses which are long and layers on, to keep warm. Good job I have no friends that call in as I cannot dress myself properly and have had to go commando for the last week ;-) I know they wouldn't know.....but I would .......

    Good job I haven't completely lost my sense of humour!!

    Sorry I could not answer all individually but it was beginning to wear on me,but managed to read them all ! Thanks again x x x

    Well everyone hope you are all as well as can be....Rainbow hugs to everyone ((((( :-) )))))

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