• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Gratefulliving

    CCI Symptoms vs POTS

    Wow, I have briefly heard of both their stories but had not seen the two links you shared until now. Thank you so much! It’s nice to know we are not alone and that even if my MRI does not come to show CCI or other connective tissue issues, we are discovering more and more about ME (and...
  2. Gratefulliving

    CCI Symptoms vs POTS

    Hi Marcus, I am from the US...located in Charlotte, NC. I was diagnosed from two different specialists using the Beighton mobility scale. I actually just came across something that said TMJ is also linked with CCI and EDS. I’ve had TMJ all my life and I’ve noticed my neck clicking like my jaw...
  3. Gratefulliving

    CCI Symptoms vs POTS

    Hi all! I am going to get an upright mri to look for CCI... I was diagnosed with ME/CFS 5 years ago. Also have been diagnosed with EDS and hyperadrenergic POTS. I’m curious if CCI symptoms develop over time. I recently (6months) have developed more neurological symptoms like nonepileptic...
  4. Gratefulliving

    Does the fatigue sometimes feel, exactly like having being drugged ?

    Yes! I always feel giggly and peaceful but completely "out of it" like I'm watching a movie of myself or hovering above my own body. Also notice my word recall is terrible!