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I think I might have CFS...

Posted , 8 users are following.

isabelle30367
isabelle30367

Hello,

So I think I might have CFS.

My dad got diagnosed with CFS about a year ago  as he’s struggled for many years. Over the last couple of years I’ve been really struggling too. I find myself sleeping 15-20 hours at a time and I still don’t feel any more awake. Sometimes I dam sleep for 2 hours and feel the exact same... I struggle to complete daily tasks such as dog walking or college. It can really vary day on day, sometimes I go to college and I can cope until I get home, but some days I fall asleep in class even though it’s interesting I’m just so so exhausted all the time. I’m malnourished but not deficient I get blood tests quite often. I’m at a loss, I get enough sleep (8-12h) but I just don’t understand what else could be wrong,

It’s so long term now. Should I talk to someone? 

2 likes, 7 replies

7 Replies

  • LyLy
    LyLy isabelle30367

    Posted

    You could have mild to moderate cfs but it's a good idea to elimate everything else with your gp before chasing cfs. You don't want to be misdiagnosed as there is no cure for cfs.

    Have you checked your iron panel, vitamin d, copper, zinc, magnesium? Is it just fatigue or are you dealing with more symptoms.

    When I first had cfs I became housebound, everything in my life was at a stand still. Then things got worse I became bedbound within a year. My body is in a constant state if exhaustion and weakness. Conserving energy is essential by pacing in the early stages. I was pacing incorrectly that's why I got worse. Don't push yourself.

  • mhah27962
    mhah27962 isabelle30367

    Posted

    Hi my daughter was also not feeling too good just about managing school and feeling sleepy in class plus in her exams, Docters said all her test came back normal so I got her b complex, vitamin d and c, thankgod she is feeling so much better. You could also just take a good multivitamin and see if that helps also lots of water. Hope this helps 

  • isabelle30367
    isabelle30367

    Posted

    Hi,

    Everything has come back normal on my bloods work. They were surprised as multiple docs have been convinced I’m anemic but my bloods say otherwise...

    I’ve tried various multivitamins in the past but nothing seems to make much of a difference... it’s just fatigue and I’m unable to put weight on but I think that’s because I don’t really eat as I have little-no appetite 

    • ME44
      ME44 isabelle30367

      Posted

      In order to have cfs you have to have other symptoms besides fatigue. There are loads of illnesses that cause cause fatigue. However in your post I noticed that you mentioned other symptoms other than fatigue. You also mentioned that you get unrefreshing sleep and little-no appetite which are also symptoms of cfs. I know fatigue is the most prominent for you but are there other symptoms that you are not paying attention to? cfs usually causes flu like symptoms, brain fog, and post exertional malaise meaning when you do too much you feel a lot worse. This includes doing too much mental work. Are you not paying attention to your other symptoms because fatigue is the most prominent? Did you get a virus or have a stressful life event that has since made you feel worse? Do you have any of the symptoms I listed above and are not paying attention to them because they come and go or are less severe than the fatigue?
  • Guest
    Guest isabelle30367

    Posted

    Have you had a recent viral infection like ebstien barr virus or hsv1 or 2? Have also been dealing with this for 5 months, looking for help and answers too, I wish you luck.
  • isabelle30367
    isabelle30367

    Posted

    Hi,

    I do have a lot of “symptoms” but I put it down to constant flu as i think I’m just always ill...

    Cold and flu symptoms

    Loss of sensation in my legs 

    No appetite

    Weight loss 

    Nausea 

    Headaches 

    Dizziness/Vertigo

    I have good days and then I have bad days where I can’t  even do anything without feeling like I’m going to just flat out 

    • ME44
      ME44 isabelle30367

      Posted

      All of your symptoms are symptoms of cfs but they can be symptoms of other things too. Unfortunately there is no diagnostic test for cfs but it is a diagnoses that is based on exclusion. The symptom that is the most hallmark of the disease is post exertional malaise so I would ask yourself if you have that. Also it is usually caused by an infection or a stressful thing in your life. Have you gotten a virus and have never fully recovered? If the answers to these things are yes then you prob have it. CFS can also be genetic and your dad has it. You should definitely go to the doctors and rule out other conditions and if they come back normal make an appointment with a cfs specialist. Some of the common tests are done that are done that point to CFS are high antibody titers to hhv6 and ebv and abnormal brain scans. In the meantime don't overexert yourself because it can turn mild/moderate cfs into severe cfs. Pacing is very important. There is hope though because some people improve over time and there are treatments out there that have helped people a lot.

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