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

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  1. i-lava-u

    SSDI hearing judge questioned why I couldn't work

    As of right now, it usually takes about 3-6 months for a decision from ALJ hearing. You cannot start a new claim until a decision has been made on your existing claim (at this stage) After you get the decision, you can appeal it (if you get denied). You have 60 days to file the appeal In the...
  2. i-lava-u

    numbness/blue finger

    Have you been assessed for Raynaud's?
  3. i-lava-u

    SSDI hearing judge questioned why I couldn't work

    I really hope you get your SSDI, but in case you don't: The appeal, after the Administrative law judge (ALJ) hearing denial, has 3 possible outcomes: 1. The appeals council agrees with the ALJ and agrees to also deny your claim 2. The appeal council feels that you were denied unfairly or...
  4. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    Thx for the conference info. @toyfoof that looks interesting. I wonder if they post the videos on youtube after? I would be very interested to watch it.
  5. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    you might be interested in this... https://www.marfan.org/dx/score
  6. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    That's really interesting, that you meet some of the Marfan criteria and likely have CCI. What is really fascinating to me, is that there are more than 200 heritable disorders of the connective tissue. EDS has been in the spotlight with ME/CFS and CCI lately, but I wonder if there are others...
  7. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    Your post is really interesting and also sad that doctors have never mentioned EDS to you, even though some have had you do all the bending and stretching :( ----- ----- I have read, although not common, that it is possible to have both EDS and Marfan. There are other symptoms and outwardly...
  8. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    No problemo ;) There are other disorders related to EDS, with an overlap of some symptoms, and one of them is called Marfan Syndrome (which also affects the connective tissue) https://www.marfan.org/about/signs https://www.marfan.org/about/related-disorders Here are some other visual signs...
  9. i-lava-u

    Worth keeping immunologist appointment?

    In that case, it wouldn't hurt to go? You never know, what you may or may get from the appointment, unless you give it a shot.
  10. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    That's very interesting, especially because Dr. Davis stated, in the video, that about 50% of the ME/CFS patients they have tested, also have EDS. Has your family member with ME/CFS or any other "flexible" family member been assessed for any types of EDS? This is the Beighton test for hEDS...
  11. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    Speaking of genes.....and thinking about the metabolic trap hypothesis.... Here is an interesting article about epigenetics. http://www.naturalhistorymag.com/features/142195/beyond-dna-epigenetics Here is an excerpt: "...When scientists talk about epigenetics they are referring to all the...
  12. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    Yes, very interesting, I have been following that thread closely ;)
  13. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    Are you talking about one with ME/CFS and only one more with another illness? Or, is the one person, the one with ME/CFS? Sorry, brain fog...:xpem::xeyes: I didn't "know" I had hEDS until diagnosed a few years ago, and I'm 42. I went to a Rheumatologist for joint pain. During the exam, he said...
  14. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    thx @wigglethemouse I will look at the links you posted. I am glad to see there are some researchers looking into family/genetic links. I was part of a clinical research study a few years ago at the University of Utah with Dr. Alan Light and Dr. Kathleen Light and they did ask a lot of...
  15. i-lava-u

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    @Janet Dafoe (Rose49) I watched this and one thing that stood out above everything else is that Ron stated that he has EDS. In my opinion, there just has to be some kind of a genetic connection with an outside insult that "switched on" ME. Also interesting is he mentioned he believes ME, GWS...
  16. i-lava-u

    Why do people with depression like listening to sad music?

    Damien Rice & Cantus Domus - It Takes a Lot to Know a Man
  17. i-lava-u

    Just not working

    For the tilt table test, a cardiologist would perform, usually at a hospital. There are lots of youtube videos if you want to see what they entail. The other test I posted with a link, the "NASA lean test" you can do at home or ask your regular MD to do if they are willing.
  18. i-lava-u

    Just not working

    If you do a tilt table test, at the cardiologist, they can test for multiple types of Dysautonomia (including POTS), some types, do not show up until later in the test, so this can be useful to rule in/out different kinds. POTS is an increase of at least 30 beats per minute within 10 minutes of...
  19. i-lava-u

    Just not working

    Have you been assessed for Dysautonomia (such as POTS)? Stimulants can make symptoms more enhanced.
  20. i-lava-u

    Intelligence, Emotional Sensitivities and Implications on Immune System

    what a very nice thing of you to say :hug::heart:
  21. i-lava-u

    Intelligence, Emotional Sensitivities and Implications on Immune System

    @Hope4 I really enjoyed reading your thoughtful, well worded post, above. :star::tulip: I especially like this.... I feel that this world, in 2019, is a system overload for our physical, mental and spiritual health. In many, many ways. I try my best, each day, to focus on the good things :)
  22. i-lava-u

    Intelligence, Emotional Sensitivities and Implications on Immune System

    Very interesting, thanks for posting :)
  23. i-lava-u

    My ME is in remission

    I have seen the posts about CCI about special imaging needed for diagnosis...how is tethered cord diagnosed? And, is there any relation to scoliosis?
  24. i-lava-u

    My ME is in remission

    @JenB wow :heart:
  25. i-lava-u

    GentleDerm - reactions?

    @MCAT Good luck at your appointment tomorrow :hug:
  26. i-lava-u

    GentleDerm - reactions?

    There is a link about Tetramethoxyluteolin on PR here: https://forums.phoenixrising.me/threads/tetramethoxyluteolin-for-the-treatment-of-neurodegenerative-diseases.62305/ Have you tried taking Luteolin on it's own, as a supplement?
  27. i-lava-u

    GentleDerm - reactions?

    Never tried this product, but just looked up the ingredients and it contains Lanolin. Personally, I react to anything that contains Lanolin. It also says something about chamomile oil on description. Never tried the oil, but I react to the tea.
  28. i-lava-u

    Sore tailbone anyone?

    @Gondwanaland interesting, had not thought of Vitamin D as a link, but maybe there is something to that, for me, for the opposite reason ;) I have had low vitamin D levels for years, even with supplementation. New Dr upped my dosage significantly a few months before I started getting tailbone...
  29. i-lava-u

    Sore tailbone anyone?

    do you mean from being inside, lack of sunlight? or something else?
  30. i-lava-u

    Increased risk of chronic fatigue syndrome following psoriasis: a nationwide population-based cohort study. Tsai et al 2019

    Interesting... My ME/CFS developed in 1995 after a bad case of mono I developed (have) psoriasis AFTER, in 2005, when pregnant with my second child