Confused

Hi there you lovely people, I just wanted to know if others had experienced denial of having this awful condition at first and then less than 12 months after the diagnosis, realising the reality of it immensely?

When first diagnosed with fibromyalgia I thought they must have it wrong because i didnt suffer widespread pain and fatigue most of the time. Wasnt prepared for the rapid decline is my daily functional ability at just 38 years old i felt and moved around like an 80 year old. Really accepting that this is me now and for the rest of my life has been so difficult.xx

22 Replies

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  • Oh my dear I lived in denial for over a decade! It's so hard to accept. I'm 58 now and was diagnosed 14/15 yrs ago. It's hard to adjust but best if you do. 😂 I just kept saying ' I'm not having this and if I ignore it it will go away.'

    Best thing I did was accept it and my life limitations but it's not easy. Don't be so hard on yourself and pace yourself. My mum is 98 and has had better life quality. Sad reality. Keep your chin up my dear and we are all here in same Noah's ark xx

  • Thanks Olivia1,

    The worse thing is that I had found the courage to persue education in the form of an access to higher education and am now studying my second year of a foundation degree but have fallen so far behind. My partners brother has been refusing his antipsychotic meds for schizophrenia since Dec 16 and this relapse his anger and delsions is directed at me! I have been in a continuous flare since Jan and havent been able to study once. I can't understand how the human rights of a mentally ill person to refuse meds that they will eventually be forced to have, completely disregaurds the human rights of others to feel safe and free from pain and suffering.

    Cara.xx

  • Excuse the spells please im a little foggy again.xx

  • How are you now clm1978? Feeling a little less stressed I hope. Keep you chin up xx

  • Oh my what a war zone for you. Has his cpn, mental Heath team been made aware? Try and keep your distance from him. You have a lot of factors playing against you just when you need a more relaxed time. So sorry Hun xx

  • after 5yrs i still cant get my head around this condition ,i have.a little cry every day just a little one ,i just cant believe that one day i was fine doing normal stuff and the next . i was like being in a nightmare ,it came on that quick and since that time its got worse ,every day got another pain somwhere esle ,. i really believe they will find a great pain killer so the pain will have gone and we can try and cope with the other side affects , it is mostle the pain thats making us so sad ,you would think in this day And age this couldnt be happening sorry to go on a bit but as i said i still cant believe this my lot suzey X ps sorry about the spelling i just cant spell lol X

  • I'm a bad speller too, it's so difficult to understand I'm pleased to have finally had a diagnosis but it really does take a while to accept, I too have a little cry each day, bless us ❤️❣

  • Yep - convinced "they" had it all wrong. After all why would a locum doctor who had met me for 5 minutes decide I had fibro (whatever that is as I had never heard of it!!) when I had been suffering from whatever I had for nearly 30 years and nobody had been able to "label" it. I came home researched it - denied I could possibly be like that then over the next year it gradually dawned on me that actually the "label" is what you make of it. One can either lapse into the "poor me why me" which we can so easily do and I did for a while or one can say "why not me" and get on and live our lives as best we can - after all there is always someone worse off. I was immediately discharged from rheumatology on the grounds that they did not treat fibro and left with the name "fibromyalgia" written on a piece of paper and told to go and look it up. My GP refused to grant my request for a referral to Guys Fibro Clinic on the grounds they couldn't do anything more than he could do. So the "self help" began and I must say my own way of dealing with it has helped me be more in tune with my body and what does and doesn't help me function more easily. Acceptance of my label doesn't mean I have to sit back and accept the limitations. I still drag myself out every day because I know even 5 minutes outside in the fresh air will make me feel better.

    I really do understand it completely - my decline over the last 6 months as been rapid but I am trying to convince myself it is just a longer flare than usual. Denial probably but the thought it being permanent isn't an option for me - afterall I have had fibro with or without the label for 30 odd years and managed thus far.

    Are you taking any medication/treatment/supplements? I know what works for one may not work for another but by sharing on the boards we can all learn from each other.

    Hang on in there, you are not alone, there are many helpful, listening folk on here.

  • Your so strong and it's good to self help, I'm going to try and stay positive too.. Thanks for sharing ❣

  • Not strong just a realist. We have to be willing, however hard, to help ourselves. Once others find we are trying they join in. Onwards and upwards!

  • Hi Dinkie,

    I was originally put on amitriptyline to take before bed but found I was so zombified still into the afternoon the following day so stopped as it was affecting my studies. Then was put on gabapentin, 100mg 3 times daily, which was fine at first as it prevented the neuralgia pains but then when these were increased up to 200mg and then 300mg 3 times daily I was just struggling with even worse fatigue so stopped and now I'm relying on co-codamol.

    The reality of my health situation really hit me (literally) after I was a victim of a hit and run driver last November. My recovery took so much longer than it ought to on reflection of the luckily minor injuries I sustained, but apart from the excruciating pain a bruised knee bone, stretched ligaments and broken toe caused, it impacted hugely on my psychological well being which still very much plagues my ability to be able to confidently walk along a public footpath.

    Yes that's right I wasn't anywhere near the road. Had no chance of avoiding a car parading towards me either as it hit me from behind so didn't see it coming.

    Cara xx

  • Hi Clm1978 welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

    it takes a long time to accept that you have a chronic pain condition and any change brings uncertainties and worries and a lot of people have to have CBT Which is a talking therapy to help you with life changes & acceptance, so your really not alone my friend. Talk to your gp and tell them how you are feeling because it is normal and they may be able to suggest something to help.

    Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.

    fmauk.org

    Peace, luv n light

    Jan xx

  • Me too Clm1978 it took me ages to accept fibro.

    However the more I fought against it the worse it was.

    I had to accept that the old me had gone and this was my life now.

    Had a bad week which was made worse because my speech was slow and I struggled to form words. I feel as if I'm going through another stage of acceptance now because I felt so stupid and it had never been that bad before. It's frightened me.

    Better week this week and it feels amazing to be a little 'normal' for as long as it lasts.

    Take care

    Angie x

  • Hi Clm1978

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have to admit that I had a short spell of denial that lasted a few weeks. I thought they had it wrong as I have a number of serious illnesses and believed they had made a mistake.

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • hi ken spoke to you yesterday about tens, iv got one to day ,will try it out and let you know. suzey X

  • That's wonderful my friend. I genuinely hope that it helps you a great deal. Please take care of yourself.

    All my hopes and dreams for you

    Ken x :)

  • Spell of denial, some would say I am still in it.... my positivity and determination is what gets me through and without hope that this is not how I will feel forever I think I may have given up on recovery a long time ago!!!

    18months ago I was unable to work and walking my children down to school was a real effort along with every other aspect of daily life. Now, I am back working part-time and continue to build on what I can do with plenty rests built in. All this does not occur without pain but life's for living the best we can and maybe someday a cure/treatment plan that actually works will be found!

    Until then family and friends, epsom salts, massage with dry needling, relaxation yoga, Lidocaine patches, meditation, nightshade free diet, redbush tea and the Body Chemist will get me through the best we can 😋

  • denial is the first stage of dealing with a crisis. It takes us all different ways and some go through it quicker than others. Once past and you start dealing with the fallout, then things move on. Not necessarily get better. I wish you well :)

  • I know how you feel I got psoriasis at 22 then was diagnosed with psychiatric arthritis now I have this an I'm so sick of it I'm 31 now An can't even properly anymore due to this as every morning I wake up An as soon as my foot as touched the floor an I apply just a little pressure upon it I need to sit down from the pain which is really annoying as it affects my feet little finger An hips an tingles An hurts like hell for hours if not days at a time An strangely enough it's only ever on either the lift side or the right but never both at the same time

  • Hi CLM 1978, I'm Gail and I'm 50 only just been diagnosed with fibromyalgia my self, although most of my life I have felt there had been something not right with me. I've always had depression anxiety from around 18 after my mams death. But it was after my devorce in 2006 when I felt my marriage was failing-that's when I began to think I'm just not right, well spread pain which started in my chest area, stiffness in my whole body, brain fog temperature change and feeling malaise,Difficult to work through a shift at work and raise my family along with house work as well. I've been constantly crashing, but like I say I'm new to fibro and learning what it entails each and every day. I'm sure we will learn a lot from this site, because my GP is nt very good, chin up and stay strong-it's not easy ❣♥️

  • Hi Dutch07

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Hi , I have just joined the site was reading through a few posts which I did not connect with then I saw yours , the latter part I could have wrote myself even though I have been diagnosed a good few years back I have been in denial and people as well as some family I feel as though it's all in my head . It certainly not easy when you look so called normal lol🤓

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