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In Denial

Posted , 7 users are following.

kylie_black
kylie_black

Hello. Thinking i need a bit of help/guidance? I was diagnosed 2 yrs ago with chronic fatigue and fibro. Which i immediately dismissed as "not right'. It was a nice little box to put me in after a couple of years already on the medical roundabout of docs, specialists, ed, ect. Well i am still in denial....As when im good im at 80 percent and feel wonderful this may last for up to a week! And i fool myself into t hinking all my symptoms are just in my head. Then i make up all the excuses when im not well...im just lazy, i overdone it in the garden, im sensitive to weather changes, im just getting older...i think im very slowly acknowledging i do have fibro?? Yet still struggle with being put into a "box" Is there anyone else that has gone through the denial?????? Needing help as am so sick of my mind denying it..........

2 likes, 16 replies

16 Replies

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  • sadie1980
    sadie1980 kylie_black

    Posted

    I could have wrote that myself I'm 35 with 3 children after the birth of my 3rd in 2014 I just felt terrible I thought it was just being not used to having a baby again as my other 2 are a lot older . This went on for ages lots of trips to the doctors even the mental health nurse ! And in Jan this year I was given the diagnosis of fibro! I thought I was ok ish with it until last Friday where I was explaining my condition to my area manager where I just broke down I was so so embarrassed but he was so supportive I felt like a wally but it was so good to have a cry as I don't cry in front of my family.

    Big hugs xx

    • kylie_black
      kylie_black sadie1980

      Posted

      Aww Sadie its so good to have a release...even if itdoes happen most unexpectedly hehehe...Im 35 too and a mum to 2 beautiful healthy active boys (9 and 10)
    • sadie1980
      sadie1980 kylie_black

      Posted

      My 3 are 16,12 and nearly 2 ! Who runs be ragged to be honest lol I work full time to and I'm doing a level 3 diploma at the mo so totally worn out x
    • kylie_black
      kylie_black sadie1980

      Posted

      Omg you are one busy mama!! One very small thing that does help me is a shower...i picture all my "bad stuff" washing aeay down the drain. May sound silly butcwhen your a busy mum and it seems likecthe only "free time you have i make use of it : ) xxxxxxxxx
  • ayesha7776
    ayesha7776 kylie_black

    Posted

    Hi kylie I have recently been diagnosed with fibro and on one hand was relieved to have a name to put to all the waves of pain, fatigue and foggy mist in my head... yet on other hand was still telling myself no its just cos of my issues with my ears(i have hearing aids n constant infections and just had a 2nd mastoidectomy)... and my facet joint disorder(which my gp spent 4 years saying was sciatica and giving me meptid for.. n now eventually after 4 years been seen by a consultant who said whoa no your ct scan shows a bulging disc AND facet joint damage 😥... now im on a cycle of resigning self to fibro being yet ANOTHER thing i suffer from and have to learn about.. not easy.. family dont understand it as its not visible and as full time mum of 4 i was like... i really dont have time for this illness not with everything else and so it decided to show me its there and im stuck with it and put me down for full 2 days where i was in so much pain even lying down hurt and i felt like a screensaver of waves from a pc was running thru me.. so ok fibro acknowledged let the learning process begin i guess...(deep sigh)... my advice? Take it a small baby step at a time anything else hurts too much if you suffer the fog.. and remember always someone here to listen...
    • kylie_black
      kylie_black ayesha7776

      Posted

      Thankyou for reply Ayesha. Wow so many busy mums on here💪 I too was relieved when a name was thrown at me. Yet always felt "not quite right " with it. I had glandular fever 5 yrs ago and really geel theres a link between mono and autoimmune disorders? But am no medical proffessional. I think its the struggle still of having an illness you cant see yet is so real and not in the head like so so soooo many people suggest. Yes like you have been so ill could not walk my mum took me to ED on a couple of occasions to be told its just exhaustion all the bloods are "normal. It was the second time my mum found me on the floor and took me to ed i tjinj she finally understood its "real" from being so awake,present, healthy, active to not being able to string a sentence,walk, think, couldnt even read!! At my worse times..

      Thanks again for the reply am very very new to a 'forum'

      Warm Wishes xxxxxxxxx

  • Magpie2me
    Magpie2me kylie_black

    Posted

    Yes it was a constant battle against Denial for me as well for many years. It is very hard to accept our limitations but once you do, you will be much more efficient in managing your FM. The Fatigue is a real wake up call when we over do it. You will get there girl! The women on this blog are all very helpful. You are not alone. Chin up sweetie! Maggie
    • kylie_black
      kylie_black Magpie2me

      Posted

      Hello Magpie2Me. Nice name😊 thankyou for your honesty in your reply. Yes think i am slowly understanding the overdoing it bit! And yes the people on here are pretty fantastic. Hsve never been on a forum let alone joined one. Thanks Again and hope you are well.

      Warm Wishes xxxxxxx

    • Magpie2me
      Magpie2me kylie_black

      Posted

      Yes Kylie, I think the secret to dealing with FM and the Chronic Fatigue that goes along with it; is to realise that at times we can feel quite 'normal' and even have some energy. But to not let that lull us into becoming complacent and thinking that we can now just 'go about our business'. We will have some better days but we need to expect the other symptoms to reappear as well. Being realistic certainly helps us not to become discouraged. It is like any other chronic condition. Diabetics need to always assure that they maintain the bit of energy they have and to take their insulin or meds. Someone that has Lupus has to be realistic in their expectations regarding the amount they can accomplish. We need to respect our up days as well as our down days and by doing so, we help others to respect these as well. xx
  • ayesha7776
    ayesha7776 kylie_black

    Posted

    Its now 10 months since i was diagnosed and one thing that helped was identifying the possible trigger to the fibro showing its face... i think sadie and i had a discussion about it on another post.. you will get there eventually but sometimes it does overload you and you have to mentally reprogramme yourself with the 'im not lazy i am ill.. im not crazy i am ill.. i can cope with this and i will.. i can carry on fibro wont keep me still' not that it works on realy bad days but on middling days it might help you refocus off the aches and pains...
  • ridgeback1
    ridgeback1 kylie_black

    Posted

    Hi Kylie

    I know exactly where you are coming from.  I have had awful issues over the last eight years with raised temperature, limb pains (muscle and bone), high CRP, chronic fatigue, high faecal calprotectin, abnormal stools and finally culminating in a week in hospital last year following a bowel bleed.  I have been investigated for various conditions but as these symptoms overlap many autoimmune conditions, various diagnoses were suggested and then backtracked on. During my hospital admission with my bowel bleed last summer the gastro consultant was talking about removing part of my bowel as it was so inflamed, which I found extremely alarming, but this episode is just being put down as unexplained, despite having high (300+) faecal calprotectin levels for months before this culmination of my bowel symptoms.  Anybody out there had a bvowel bleed like this, with raised faecal calprotectin levels from fibro alone?

     

    Whilst I agree that the residual symptoms I now have could be fibro, I have no tender points (I have not even had a pysical examination to see if I do), and my pain is centred purely on my arms from above the eblow to hands, and from mid-thigh to my feet, with no trunk involvement. It does not involve my shoulders or hips, which seem to be primary fibro sites. Having spent eight years having my previous symptoms suppressed with autoimmune drugs and antiinflammatories, which were the only treatments which helped alleviate symptoms, I cannot help but feel I am in remission with my primary autoimmune condition and have been left with fibro as a secondary to this.

    My rheumatologist seems to be suggesting that whatever I had before has now completely gone away as my blood results are stable.  Is it possible for this to happen or does it mean that I am in remission and it may return as some point? I am uncertain whether an autoimmune condition can just disappear completely after such a long period of time?  My worry is that I may be discharged from my rheumatologist as fibro can dealth with by a GP and then, should it should flare up again, will have to wait for months to get back into the hospital system. I am really worried that my bowel symptoms will flare like they did last year and I could end up having a bowel section removed without any medical explanation for the cause - particularly as my discharge letter did mention IBD as a possible explanation following biopsy.

    I am now on Nortriptyline and off my other autoimmune drugs (apart from my thyroxine as I am also hypothyroid), and currently have some relief from the pain and constant fatigue, so at least am enjoying some quality of life.  However, I feel that the primary cause of my problems has not been determined and that having now been put in the fibro box means that all the other things I have gone through are being dismissed as incidental. Sometimes I feel as though I am living in a parallel universe to the hospital and that they just pick out the bits of my story and make them fit a conventional problem, even when they acknowledge that so much that has happened does not make sense and they choose to shelve it.

    Any thoughts on this would be appreciated.  It would be good to know if other people who are being told they are purely fibro (and please understand I am not belittling fibro) have had these other major bowel episodes and abnormal blood results over a period of many, many years. 

    Anyway, sending hugs to all and hope you all find good days. x

     

    • kylie_black
      kylie_black ridgeback1

      Posted

      Thanks for the information and reply. I really hope you are feel8ng a little better.

      The only thing "similar' I've experienced is C-Diff i got about 1 yr ago. Would not want that ever ever again. I had a tooth abcess, after i just recuperated from shingles (which i was kind of thankfull for as it would explain why id been feeling so unwell for yrs)....anyway the antibiotics i was on gave me CDiff (bacterial gut infection) which i find out later is quite common!! I have always had IBS. The link of gut flora and being healthy (mentally and physically)is incredible. I love learning and reading about all the new research going on. Which im sure you'd be all over it too😊

      I wish you well xxxxxx

  • hope4cure
    hope4cure kylie_black

    Posted

    Hi Kylie,

    everything you said is perfectly normal. I felt the same way when I was diagnosed 15 years ago before there was a name for it. At that time there wasn't much in the way of medications available or was it understood.

    today more and more rheumy's have many treatments for FM and there is a far better understanding of this disease.

    take it one day at a time, be mindful of every day activities and eventually you will learn new ways of doing things and coping with FM. 

    REST daily and relaxation is important as well as a positive frame of mind. 

    Stay busy and distract yourself with hobbies, animals or volunteer at something you can do that is within your abilities. 

    Peace & heeling

     

    • kylie_black
      kylie_black hope4cure

      Posted

      Thankyou hopeforcure. Your absolutley right about hobbies ect. As when first told by doc about fibro and chronic fatigue of course the first thing i did was "dr google"😊 the more i read the more i related to everything! But ironically the more i read the more "sick" i seem to become, so i vowed to myself to stop reading/researching on the subject. I joined a local ladys fitness group which was really helpful. As was so lucky to have found a fitness group with a very well trained instructor and lady's there for all various reasons (ms, cancer survival, detoxing(drugs), obesity, and just to feel better) i felt so lucky and fortunate to be with a group of incredible women all on our own journeys. So stoped reading, getting out (as the depression and anxiety even make that hard) and alot of mind work...its ok to feel the way i do, its ok not to fit, its ok to be me😊 I am also just getting back into meditation as am a strong beliver of healthy mind healthy body. (Albeit sometimes very hard to stay positive frame of mind at times) Thanks again for reply

      Warm Wishes xxxxxxxx

    • hope4cure
      hope4cure kylie_black

      Posted

      Hello Kylie,

      WOW!!!! Wha an inspirational post. 

      Thank you for such a positive and strong willed example you are for so many! 👍

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