• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. rel8ted

    Is m.e. yet another form of EDS?

    Um, asking a legitimate question backed up by the Twitter post of the person you are referencing is not shaming. It is asking a question.
  2. rel8ted

    Is m.e. yet another form of EDS?

    I’m sure that @JenB would appreciate you questioning her assertion and insisting she has EDS even though she has publicly said she does not. Yes, she said there is overlap. I agree there is overlap. That does not make it the same.
  3. rel8ted

    Is m.e. yet another form of EDS?

    Are you saying that she has EDS? My understanding was that she came right out and said she does not.
  4. rel8ted

    Is m.e. yet another form of EDS?

    There is currently no gene marker for hEDS, but…. https://web.musc.edu/about/news-center/2021/07/14/musc-researchers-announce-gene-mutation-discovery-associated-with-eds-ehlers-danlos There is current research happening at Medical University of South Carolina. If you have a dx of EDS, you may...
  5. rel8ted

    Is m.e. yet another form of EDS?

    Beighton
  6. rel8ted

    Is m.e. yet another form of EDS?

    My ME dx came long before I was officially dx with hEDS, and I have wondered if they are one and the same as well.
  7. rel8ted

    Proprioception Dysfunction - treating this improved my symptoms (I think!)

    I had a patient once with a severely autistic child that had been prescribed prism lenses to "treat" his autism. I think sometimes we all want a cure so desperately we will try anything.
  8. rel8ted

    Social Security Disability (SSDI) Resources of Interest (US)

    You have to pay into social security to get SSDI. Otherwise, you are only eligible for SSI, that is correct. It’s not a strange exception because you haven’t paid into the plan.
  9. rel8ted

    Q&A session on hEDS with Norris Lab

    For those of you that are not familiar with Norris Lab, it is an research center at Medical University of South Carolina. They are working on finding a gene for hEDS. They have identified a strong candidate, but are unable to name the gene until research is published & peer reviewed.
  10. rel8ted

    Dr levine wants lab at labcorp, worth it?

    If you had a family friend with nursing credentials they may be willing to help you out. It will really just depend on if they have access to supplies that they can take home. I have a phlebotomist friend that drew for me when I was too unwell to leave the house. Did you check with Labcorp to...
  11. rel8ted

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Finally got through trying to take all of this in. Looks to be very thorough study that sounds like ME/CFS symptoms are described accurately. Is there a way to be tested and treated in the US?
  12. rel8ted

    Does anyone else have muscle weakness plus ptosis?

    No biopsy, it’s the one thing none of the 5 neuros ever mentioned. Not sure I want to go through that. Have EDS, heal slowly & my recent surgery has brought my MCAS back in full force. I was able to quiet it down with SAAT acupuncture for several months. Retreating to see if it works again...
  13. rel8ted

    Poll: Your Original Antigenic Sin (Early Childhood Infections)

    Persistent strep. Almost every year until age 12.
  14. rel8ted

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    I have a vivofit but cannot remember if it is a 4. It reliably tells me when my HR exceeds my set point. I charge it about every 4-5 days, even running pulse ox.
  15. rel8ted

    nancy klimas research

    It usually has to do with insurance tiers and if or how much they will pay. From Google; If a medication is “non-formulary,” it means it is not included on the insurance company's “formulary” or list of covered medications. ... Your Member Services phone number is usually listed on the back of...
  16. rel8ted

    My Keto Experience

    I’ve been keto for a couple years. There ARE times when I have paused, like after surgery when it was just easier to eat out of a box. I generally have much better feeling of well being on keto due to grain sensitivities. I do not feel like I have more energy though.
  17. rel8ted

    Multitasking Biomolecules in ME/CFS Pathogenesis - Alain Moreau - OMF Working Group Meeting September 8-11, 2020

    Tried both. Gabapentin caused significant weight gain with no improvements. Lyrica gave minor nerve pain improvement for a short time, but I ended up worse off. Neither improved cognition.
  18. rel8ted

    Should I keep HR low or push it high while exercising with POTS?

    Sitting up can be 116
  19. rel8ted

    Long-term Disability (LTD) Appeal was denied (US)

    There is also such a thing as vocational assessment. A good disability lawyer. Should help you with a professional vocational assessment that evaluates your ability to do ANY job based on your medical records. This is where making sure your doctors have written detailed notes is key!
  20. rel8ted

    Mast cell activation syndrome is not what it seems

    I don’t remember which one it was. Not well enough to make the hour drive one way to have it redone at this point.
  21. rel8ted

    Mast cell activation syndrome is not what it seems

    @Learner1 i get that it shouldn’t work that way, but I just got a bill for my part of roughly $5900 worth of labs that were run back in December. One of those was no good. The doc took the time to go over the protocol with them, but they couldn’t bother to freeze the specimen immediately, likely...
  22. rel8ted

    Mast cell activation syndrome is not what it seems

    Most docs here just deny it exists. My mcas doc actually left his partnership & started a new practice for this reason. Anytime he has sent me for labs, the hospital lab has been unable to complete them correctly, resulting in a bill for results never received. Trying to get treatment is useless.
  23. rel8ted

    Fatigue super conference April 21

    Optimum Health Clinic has looks like it’s some sort of psychology/ functional medicine approach & has a 90 program with a bunch of recovery testimonies. They are one of the sponsors 🙄. We need solutions, not green smoothies!
  24. rel8ted

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

    Ask for clarification if you think you misunderstood. You need to use a surgeon that uses a procedure you are comfortable with. His staff is amazing & they will respond to you.
  25. rel8ted

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    It has a graph that shows daily heart rate by time. It also has a 7 day & 4 week chart which I find less useful, but you can scroll back and see each day's chart individually, which I think is more useful examples here...
  26. rel8ted

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    I used to have a polar with chest strap. I liked it, but the strap was annoying. I have a Garmin now & like it lots better bc I can just use the app to look at how things have gone throughout the day. There is a HR chart. Also has sleep tracking. It’s a vivofit, so not huge which I also like
  27. rel8ted

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

    That does not mean that the surgeon is not the one who should order his preferred views. I am not making that statement as a guess. I am again going to make an unpopular statement here that some are putting too much hope into this as a cure. Not everyone is going to 1.) need surgery or 2.)...
  28. rel8ted

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

    The type of MRI you get depends on the surgeon. Upright if it’s Patel. Your surgeon should be the one to order it so it contains the views they require.
  29. rel8ted

    Tissue swelling?

    Happens when my Dysautonomia acts up. May no BE that, but always at the same time.
  30. rel8ted

    Feeling paranoid about dysphagia (inability to swallow) does anyone else have it?

    I do. Thankfully it usually does not last long