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Suffering debilitating CFS, hate the label it denotes laziness, ...

Posted , 8 users are following.

yannit
yannit

Nothing has helped,... anyone have an ideas, remedies, supplements....

anything???

1 like, 6 replies

6 Replies

  • russ151
    russ151 yannit

    Posted

    Hi have you had your b12 blood tests if these are low anything under 500 is considered low with someone with chronic fatigue it can be well worth supplementing it helped me a great deal hope that helps i would ask your gp to work with you and have blood tests that might show if anything else is contributing to your fatigue if you haven't already hope this helps a little
  • joanne71205
    joanne71205 yannit

    Posted

    I found D ribose supplement really helps me, especially with the brain fog and muscle fatigue. Good luck x 
  • caitlin39841
    caitlin39841 yannit

    Posted

    Hi Yannit. you have my sympathies. do bear with it as it can get better.

    i reinforce what Russ has said re having your vitamin b12 levels checked. i'd also ask the GP to check you're Folate levels & your thyroid function i.e. T3, T4 & Thyroid stimulating hormone, if not already done. all of the above work synergistically i.e. there needs to be adequate amounts of each to work effectively.  they are interdependent. when you get your blood results, do ask for the numbers as GP's tend to have their own idea of what's normal in respect of vitamin  b12 levels. 

    supplementing with b12 &  Folic Acid made a massive difference to my  ME/CFS. i also, take high dose CoQ10, L-Carnitine, D-Ribose, Magnesium & vitamin b3. however, the best response came when i added Vitamin b12 & Folate.

    hope you feel better soon

    Caitlin 

  • jackie00198
    jackie00198 yannit

    Posted

    I think we all agree about the terrible name--CFS. That's why the current name in greater usage is ME/CFS. The ME stands for myalgic encephalomyelitis. CFS has long been the name used in the U.S., and ME is the name used in the UK. In times past, when I used the name CFS to people, a common response was, "Oh, yeah. I get tired too." Now I just say ME. I've decided to drop the CFS. People says what's ME? When I tell them, the response is 100% concern and "that sounds serious." There is no remedy for this illness. You might want to describe your particular situation in more detail to this group. Rest, pacing, remaining calm, and leading a healthy lifestyle can sometimes help in managing symptoms.
  • yannit
    yannit

    Posted

    Hi all,

    Thank you all for your advice and caring. I really appreciate it.

    Having been through sooo many tests, to be honest I am not sure on which test were performed. I have been a lab rat for so long,... but my doctor has always said nothing is out of balance,... even though a diagnosis with debilitating CFS disability points to the opposite. I guess its time to restart the conversation with my doctor.... again.

    Thanks again

    • caitlin39841
      caitlin39841 yannit

      Posted

      yes, do that yannit. it might be a good idea to take someone with u to the GP appoint.   Gp's tend to be more 'amenable' to taking things further when there's another person present. and the second 'head' is always useful. 

      meantime, if/when you have a window of opportunity - energy wise, it might be helpful if you have a look @ the 'HealthUnlocked' website in the 'Pernicous Anaemia Section' (PAS). alternatively, the PAS website is excellent. it's v. accessibe & succinctly outlines the signs & symptoms of b12 deficiency. you could compare your symptom list.

       often ppl with ME/CFS develope low b12 & Folate over time as well as the thyroid stuff. if the b12/Folate are low & u supplement, it can measurably  help with the misery of the  ME/CFS symptoms. anything that can reduce the symptom burden makes  it all more manageable.

      all good luck with the next step.

      C.

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