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    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. R

    legs, body feel too weak to deal with hardness of floor, chair etc

    Update: I was off the internet from fall 2019 till May 2022 due to inability to hold head straight and couldn't read small text like on a cell phone. My dad was going online for me to research and typing for me. I also stopped feeding myself during that time, but that was probably due to wearing...
  2. R

    Is m.e. yet another form of EDS?

    Thanks for the explanation, but is there any way to suppress above tissue destroying enzymes? This would be a great help for me.
  3. R

    Is there anything that’s actually promising?

    This link not working
  4. R

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Thanks, but how were you taking it, by rinsing in the mouth?
  5. R

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Thank you, will follow your advice, so what is the best brand? Cost is not that important.
  6. R

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    When I tried using d-ribose, my heart rate went through the roof, but no extra energy. Do you have any idea why this happened? Tnx
  7. R

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Do you think doing it subcutaneously like you are doing is as good as IV? If I'm doing some mixing, why not do it your way then?
  8. R

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    I may have hard time doing sublinqual bc it will take lots of energy to hold it in the mouth!.
  9. R

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Thanks, but how NMN fits in, and what is the brand name?
  10. R

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    Is this the same as d-ribose? I tried d-ribose, but no results!
  11. R

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    I'm too weak for the IV. What is the next best thing to try - patch, injection, or oral? Tnx
  12. R

    HMB to prevent muscle wasting and improve wound healing

    Hi @Basilico , how is your progress on it? How much of each ingredient do you use? Tnx
  13. R

    Question about EDS

    They have a more specific video re treatment.
  14. R

    legs, body feel too weak to deal with hardness of floor, chair etc

    Update - now I need over 15 duvets under me when I lie in bed otherwise I loose all my energy. I have severe muscle loss and loose joints.
  15. R

    List of ME/CFS Recovery and Improvement Stories

    There are also lots of recovery stories on PR where people get better when cutting out carbs from a diet. Also reversed therapy helped a couple at least. Great list, thanks!
  16. R

    Buying antibiotics for Lyme online

    That's great to hear @Garz . How soon did you start feeling better after starting doxy? What was your activity level pre abx? Do you have any side effects from doxy? Thanks
  17. R

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @DrDiana Are the symptoms of intracranial hypertension the same as those of CCI/cranial settling? Is there any risk of trying Diamox? In the case one has normal CFS pressure? What were your symptoms? Thanks
  18. R

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    Hi @Avenger , how much could stand and walk when you were sick? How was your energy level?
  19. R

    Would you try a Lyme disease treatment ?

    Did you have herx reaction? What symptoms improved?
  20. R

    Buying antibiotics for Lyme online

    Hey , how is abx going?
  21. R

    Would you try a Lyme disease treatment ?

    Hey all, my LL ND wants me to trial Doxycyline 200 mg per day for a 30 days. Will that amount kill off a lot of good gut bacteria?
  22. R

    is there any way or device that can help grow muscle or maintain it without exercise?

    @Wishful, i am also very limited in how much exercise i can do due to low ATP and PEM (i can't walk more than a few steps or stand more than a few seconds at a time-mostly bedroom bound), but yes i could probably do a few contractions of muscles if joints wouldn't get injured upon doing them...
  23. R

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @jeff_w did your symptoms get worse on flexion or extension since you had horizontal instability as well? or because you also had the cranial settling/ rotational issues it wasn't noticeable?
  24. R

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    does manual cervical traction making a person feel better mean that the issue is CCI or are there other medical conditions that would feel better upon getting cervical traction? btw, i remember a lady on BTM wrote she didn't feel better with traction but the surgery still helped her with some...
  25. R

    is there any way or device that can help grow muscle or maintain it without exercise?

    @Pearshaped i haven't been assessed for EDS though was thinking about it. the joint issues only started past 2 years so thought its maybe related to muscle atrophy, which is what my drs are saying. i thought though it was something related to ligaments, the joint injuries don't feel like muscle...
  26. R

    is there any way or device that can help grow muscle or maintain it without exercise?

    since mid 2018 all my joints feel more and more empty with less strength/tension and if i let any limb hang it feels like it will rip at the joint, and it actually happened when i let it hang too long: i was sitting on chair where legs were dangling above the ground and that caused ripping at...
  27. R

    is there any way or device that can help grow muscle or maintain it without exercise?

    i might have energy for a bit of contracting if i dont have to be standing. however i am worried the joints would still get injured. doing quad sets (contracting the quadriceps) caused my knees to get injured, and they now feel emptier and have less tension in them than would usually have, as if...
  28. R

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    @Hip wouldn't the yellow line be shorter if the odontoid is tilted to the brainstem vs if odontoid straighter? i get that if ligament swollen the distance would be bigger.
  29. R

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    on page 87 (i think) of this thread there are posts saying there is risk of making the instability worse (due to stretching the ligaments, especially a problem for people with EDS i think?)