What are my feelings about being diagnosed with FMS? What are yours?

What are my feelings about being diagnosed with FMS?  What are yours?

My challenge this week is to give some thought to being mindful about my feelings and emotions about being diagnosed with FMS. I know to some extent - but I try not to think about it, as the emotions are quite intense. It is going to be a real challenge for me to face my emotions and to be more aware of them.

I wonder whether anyone else has feelings to share?

14 Replies

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  • my symptoms started when I was 9, Im now 37. I found out in June this year that I was given a diagnosis in April 2001. My GP at the time decided not to tell me! all she said was "Oh well we still dont no whats wrong with you! so you will just have to get on with it"

    so how much of my "getting on with it" caused me damage? Im very upset by this.

    my Getting on with involved going back to work when my son was 4 months old, so i was working and running my own business, running a home, raising a child by myself as his dad worked away. In 2010 my Sons Dad turned on me telling me, as the doc had said there was nothing wrong with me so I must be just making it all up. I then had to injour 5 years of domestic abuse from this man as I could not get any help! Iv had vertigo for 2 years and it seams this has happened from over doing it! Im feeling quite angery about all this at the moment x

  • Hi pet Dr are all supposed to sign the hipacratic oath I'm beginning to think its more like the hipacritic oath they are supposed to first do no harm, I used to think my Dr was ok till I realised if I went in with a problem all he said was its probably your fibro he didn't send me for tests or blood tests I found out last year I was supposed to have regular bloodtests because of all the meds I'm on I've been with the same Dr for 15 years he retired about 2 years I've been sent to pain clinic by my new Dr and now have regular blood tests it may help you to try a different Dr a second opinion can be helpful. Sithy

  • TO SAMMI16 my heart goes out to you, i was in a mental hospital for a while because of fibro just has me wasted, i am a bloke by the way, but i don't have a partner, in some ways i think i am so lucky not to but in other ways i'm not, to have some one to rub were it is sore to give me a soft hug when my body is in agony from head to toe, lucky as i did'nt have to go throught the hell of trying to make someone who is supposed to love me forever unconditionally belive me, i would be heartbroken, when i was in the hospital the amount of women who were there in tears because there husband boyfriend treated them disgracefully, could you husband not open his eyes and see what you were going through because myself and these woman anyone could see the pain, it was written all over their faces, not being listened to by my friends is bad enough not one has thought you know i will look it up could he have not done the same and should have as he was your husband, the woman in hospital were so hurt by their other halfs, i felt so sorry for them, the pain you must have felt when he said if the doctor said it it must be true, has he not got eyes on him, sorry for what you went through, doctors just dont know what to do with it, just throw tablets at you i think they dont really care i asked mine if since he started treating me if he had looked it up on the internet researced it a bit so maybe he could help me, he said no, i replied i thought that is what you are paid to do someone comes along if you don't undersand it you research it, he was'nt to impressed, sorry for your troubles i hope as well as changing doctors you have changed husbands because i have read many stories about good husbands and met one in the hospital who was she beamed when she saw him but then that brought her other troubles about feeling guilty about him giving up things or feeling a burden on him but he loved her and accepted this is the way its going to be he had made his commitment to her and that was that, sorry you didnt have that and it all swings and roundabouts as we say where i live you husband will get what back what he puts into life and abusing you will all come back on him in someway or another, anyway bless you. hagi x

  • Biggggggggggggggggggggggest hugs to you thought you might benefit from them. Sithy

  • I suppose my problem with fibro is that when I was diagnosed over 20 years ago all the symptoms I had was the odd flare of chostochondritis that's what led to the diagnosis some ibs flare ups and the occasional odd day when I was so tired I could hardly move. Every other day I was my normal self so until 4 years ago I still didn't see fibro as the problem it has now become. Then I slowly developed arthritis and because of restricted movement fibro really took a hold... Literally overnight I went form being me to this 43 yrold woman in constant pain and much less mobile.... Took me a year to actually accept it then a year grieving for the me my family had lost... Only really been the last year I have actually accepted this is me now so have tried to do positive things to help. Moved to a bungalow from a very large house. Social services have given me aids to help round the house on permenant medication.... How do I feel about fibro.... It's better than a lot of illnesses that could have killed me and left my family alone.....and I get to be here for my family and now I have a mobility scooter and bus pass I can trundle round car boots, supervise shopping. We do things together in a way I never thought we would... Yes I have my bad days as I have posted on here but mainly I try to enjoy what I have . My heart. Goes out to the younger members on here who have it badly

    Ramble over VGxx

  • Thought you might like some biggggggggggggggggggggggest hugs aswell. Sithy

  • My feeling was relief, at last I had a diagnosis, I wasn't just being a hypochondriac!

    Cheers, Midori

  • Me too! I was in car accident when I was 23. My boyfriend was in it too and he recovered in just a few months. I was more bruised but otherwise in the same condition as him physically. I had a few bruised ribs so when it took over 6 monthsI thought it was because my ribsneeded extra time. My gp was useless just telling me the pain was from the accident and i should get better in 6 months. Then he changed it to 1 year. But when it was getting close to 1 year and I was barely making any progress, and the pain was the same he told me to go on a diet and try being more active. All this time i pushed myself beyond my limits because that's who i am and how I used to cope. He said it would take 1 and a half years from the date of the accident.

    By this point i had lost all faith in the gp and went for some expensive private doctors to find out what was wrong with me. 10 months after that I got the diagnosis and it felt so good to be able to know what was happening to have a starting point for different treatments i should try and even the vague prognosis of it can get better if I change my lifestyle was so helpful and gave me back hope that my life can continue and i am not stuck in limbo forever.

    I was also depressed and anxious at the time, so all the mental health doctors and even the Cbt counsellor kept telling me it is psychosomatic and i should push past the limits I impose on myself. Made me so angry and I kept doubting myself. And i tried pushing past my limits even more, which made things a lot worse, but at least it led me to realize i cannot do that anymore and that i really do need medication for the pain not just over the counter needs which do almost nothing. That is when i finally started on AMitriptyline for the pain and I started getting better.

    2 years after the accident It turned out that a year after the accident the gp had written fibro in his notes, but never told me or referred me or even did blood tests. He didn't even mention this to the private rheumatologist I was seeing who tried to contact him over and over again. When I confronted the gp about this he said that rheumatologist was not someone he reffered me to so he didn't have to talk to him, that's the system. And he actually said that he didn't tell me about the fibro because there is no test or cure for it. When i said he should have excluded other causeswith tests he said he didn't know I was in pain because I didn't come to see him every week to say I am still in pain. I couldn't believe it! I had a a go at him then for a while and even though I was in tears for hours it was worth it. Now I just need to get enough energy to put a complaint in witting and see how much trouble I can get him in so he will finally see that his negligence cost me a year of pain and suffering that could have instead been about finding the right pills and learning to pace myself so I can have a better life.

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    found it at this website

  • it makes me feel mad and stupite can.t think stright mind all over the place i hate fm so much

  • Leebeloola I think after the way you Dr has treated you he should be struck off he's not fit to practice medicine the hipacratic oath that all Drs sign states at somepoint first do no harm this is my humble opinion. Sithy

  • Thanks, it' good to hear I am not the only one who thinks this is wrong. I do agree no doctor should be so uninterested and bad at sending important info. Though I am really mad about the way he behaved I think that it is unlikely he will get struck off no matter what i do. He is the head gp at the practice I go to. I would love for a different doctor to take over at the practice. But if I can just get him to be more helpful and honest with patients in the future that would be enough. I realize this is unlikely but i need to believe there is a possibility of that.

  • Here are my bigggggggggggggggggggggggggggggggggggggggest hugsssssssssssssss for all I think we all deserve a bit of love and hugs and I'm in the mood to be soppy. Sithy