In denial

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I've been diagnosed with ME/CFS within the last 6 months and the trouble is I compare myself to a friend who also has ME, our symptoms can vary ,which then I think well I don't have that or I'm no way as bad as that so it can't be ME!

I have a part time job working in a farm shop, with some lifting also on my feet all the time,so I keep putting it down to my job as to why my body aches and the burning/stabbing Pain in my shoulders is sometimes unbearable . I don't have a problem with sleeping,I could sleep on a bed of nails when a waves of tiredness/fatigue comes over me . I Will have a sleep most days and still want to go to bed by 8.

The other week I had my first "relapse " so the internet suggested. For 3-5 days I had Full on flu like symptoms , terrible back ache etc ....but even still I'm now thinking it was just a virus ! To be honest I don't really know what I'm trying to say or ask. Just keep thinking it's my job for the reason I feel like i do. I had a couple of weeks of from work and I was responsible ok , gone back to work first day back the burning pain is back as well as the aches!!! Am I the only one going mad and in denial !!!! Sorry for ranting on.

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12 Replies

  • Posted

    Hi Kim,

    I was diagnosed with post viral fatigue syndrome (currently 6 months into this) having been a high level amateur triathlete 6+years before illness, PVF is apparently a benign form of m.e So it is important to know that just about everyone is effected differently with this condition. You sound like you are also on the moderate end of the m.e spectrum.

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  • Posted

    What did your doctor say were the reasons for his diagnoses of ME and to what severity did her class you with?

    Lots of things can affect you in ways which may seem like it is ME from diet, environment, work load, emotional state etc... 

    How long have you had the symptoms?

    What kind of tests has your doctor undertaken?

    You said that you had a relapse last week, when were you last poorly and what were the symptoms?

    Feel free to PM me if you do not wish to discuss in the public domain. 

     

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    • Posted

      I have been suffering with fatigue for 2 years or more,wanting to sleep and falling asleep in various places car parks etc... I went for a second opinion and had various scans ,ECG and blood test  , I was then referred to the CFS clinic and the diagnoses was CFS/ME/fibromyalgia  . I Was put on cabapentin and anti depressants. That's it really was left to my own devises.

      With regards to my relapse that was the first time I felt really poorly ,couldn't do anything staying on the sofa for 2 days , I've not been that bad before, the usual symptoms are  back & neck ache, glands being tender,burning stabbing feeling from my shoulders and my legs will ache and the oblivious being down with it all. 

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    • Posted

      Were you diagnosed with all three conditions, as in CFS, M.E and Fibromyalgia? It is extremely rare to be diagnosed with all 3 at the same time, I have never come across that throughout my 3 years of reseraching into M.E.

      As Jackie has stated, be careful that you do not do too much as you may cause more harm than good.

      What does your diet consist of on a daily basis?

      Do you currently undertake any exercise?

       

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    • Posted

      We'll I was given the impression from my doctor and research that CFS and ME are one of the same really! My doc said that is sounds like some of my symptoms could be fibdromyalgia and the tablets would help"duloxetine and the gabapentin. I try to exercise twice a week and that inc kundalin yoga (meditation and relaxation). I eat fairly healthily not to much red meat fish once a week"but I do have a sweet tooth.

      i have decided over the night to give notice on my job"as much as is love it I know in my heart it isn't helping me,will go back to bookkeeping from home.

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    • Posted

      Like I said to Gizmo I did lose my sense of smell 3 years ago after having a really bad cold and thinking about it that's when my fagtigue started.
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  • Posted

    Well, I think your post indicates you're not really in denial. Have you been diagnosed with ME/CFS? Might be a good idea. Also, if you do have it, you can really do yourself harm by pushing yourself. That can cause relapse and worsen the condition. Take it from someone who's been there. Moi! 
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    • Posted

      I'm getting the impression thinking about it that my doctor is probably one of those who doesn't beilve in this illness,just sends me away with pain killers. I go back in July to the chronic fatigue clinic but yet again that just feels like a fob off. I will be giving my notice in on my job such a shame as I love it and it makes me mad to think especially as iam in denial that I'm just be lazy ,but then again my body was telling me last night enough is enough.
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  • Posted

    Hi Kim, has your doctor fully investigated your back and shoulder problems ie. have you had mri's to check that you don't have osteoarthritis or any degenerative discs? The other condition I was thinking of is fibromyalgia but again this has many different symptoms. Wow, wish I could sleep on a bed let alone a bed of nails lol. I do understand how frustrating all this is, especially the feeling that you may be incorrectly diagnosed. Have you seen a Rheumatologist?
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    • Posted

      Yes had scan can't remember if it was MRIot CT scan it was on my head I'm sure (That's the other thing my memory is shocking) the scan that was due to me losing my sense of smell 2-3 years ago and thinking about it that's when all this tiredness started after having a bad cold. 
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  • Posted

    Hey smile I know exactly how you feel! I was diagnosed about 3 months ago... 

    Whenever I am on an "up" period and am feeling alright I start second-guessing my condition. I think "What if I was just really really tired?" I seem to forget what it feels like when I am on a "down" period. On my "down" periods I get really tired, flu like symptoms (which later I tell myself were just hayfever) and really bad muscle pain. 

    I know sometimes it is tempting to read all of the symptom lists and check yours off and if you don't have a couple of them you think it was all just a big mistake. I also know it is really easy to compare yourself to other people who have CFS/ME- like you said, everyone is different! Unfortunately, sometimes I feel like I am taking advantage of everyone's generosity and understanding when I am on an up period. 

    Trust me, I know how it feels to be in denial about it! No one wants to admit they are sick! 

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    • Posted

      Very true and  even now that I have just given notice to my job that I enjoy,I'm thinking "we'll it could just have been my job making me feel the way I did " it drives me crazy because I trying to rationalise everything little thing on how I'm feeling that day. I know my job didn't help matters. when I finally leave my job in a couple of weeks I will be waiting to see how I feel!!!!!! CRAZY thank you very much for replying to my rant. What was you like before you got diagnosed and how long did it take ?
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