Shakiibird

239d

I've been living with chronic conditions since my childhood. In 2007 everything changed when I came down with mono. Since then I've learned a lot about coping with pain. My biggest problem right now is fatigue. I cannot figure out how to predict my energy level. It makes planning almost impossible. Anyone have tips?

Chronic Generalized pain

Cyanocobalamin

Myalgic encephalomyelitis/ Chronic fatigue syndrome (ME/CFS)

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  • Sunshine10

    238d

    My first diagnosis was mono and when I didn’t get better my doctors have been at a loss. Were you diagnosed with chronic mono? I also have an impossible time planning things. I never know how I’m going to feel.

    • Shakiibird

      238d

      My dx was eventually changed to CFS and then RA over the course of about 10 years. Basically my meds have changed a bunch but the fatigue doesn't change

      • Sunshine10

        238d

        over the course of your diagnoses have you ever tried diet modification? That’s the path I’m currently exploring. Specifically Fodmap.

    • CactusCat

      234d

      I didn't know chronic mono was a thing... I had chronic fatigue before getting mono about 6 years ago, but it definitely went downhill from there. There was a period of time i felt "better" after the worst of mono, but i still felt awful and ended up feeling even worse overtime... Now i'm wondering.

      • Sunshine10

        228d

        supposedly it is. My primary care said she has one other patient with it. Me she’s not sure. I’m being tested for MS this week.

  • Ashley_W

    237d

    Hi there! Ill since childhood as well. I’ve hardly mastered fatigue (M.E. Since age 10, other chronic illness prior), but I’ve starting figuring out my daily max in hopes of not going in to “debt” the next day as much. It’s not exactly predictable unless I exceed my max (different for everyone), in which case I know I need to plan to be in bed for the following 48-72 hours. Pacing is kind of tricky to figure out, but it does help me in terms of a more predictable number of functional hours for most days, versus the push and crash cycle.

  • Babypossum

    236d

    I’m dealing with CFS that was maybe triggered by mono, and I recently started daily B-12 vitamins. I’ve noticed a real change in my energy levels. Doesn’t help the body fatigue though :(

    • CactusCat

      234d

      Curious: What is recently? I think i give up on supplements too fast, but i'm not sure. It's frustrating waiting to see if they'll work.

  • ScrubLord

    222d

    Hi I have Multiple Sclerosis with similar symptoms. Mono is now believed to be the root factor in the development of MS. Chronic fatigue, pins and needles, brain fog, pain, these are all symptoms of MS. Something worth noting

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