• 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.

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  1. Starsister

    Trouble swallowing (dysphagia) - neurological ?

    I’ve suspected fir a long time that’s my swallowing problems are connected to neurological problems either from SFN or my ME/CFS. Not sure how to get this confirmed medically though.
  2. Starsister

    Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

    @Nanni @Rufous McKinney yes, coconut has caprylic acid that is good for gut.. I’ve taken Ecolological Formulas brand called Caprystatin for many years (originally given to me by Chinese Medicine Dr) It has helped manage my chronic yeast and leaky gut. I wonder if the yogurt contains sugars...
  3. Starsister

    Introduce yourself

    @appa I just want to welcome to this thread. I’m surprised it isn’t more active and wish it were. It sucks being a sexual minority of any kind but then with a disease that historically no one has believed in also. I can’t imagine having 2 kids to care for in addition. I hope your spouse is...
  4. Starsister

    Introduce yourself

    @Pyrrhus Sorry I don’t know how to highlight parts but appreciate all of your response. I agree that all of the sexual minority diversities deserve their own visibility ( although lumping everybody together as lgbtqia, a as in asexual, still doesn’t accomplish that). And we still haven’t added...
  5. Starsister

    Introduce yourself

    Great to know another “ old time lesbian” on here!! Joanie and Jolynn of Redwood Records were two of the founders of our lesbian feminist bookstore collective here in Kansas City in the early 70’s. They left KC to help Holly Near found Redwood. We are fortunate to have a wonderful Gay and...
  6. Starsister

    Introduce yourself

    Springbok Where in Kansas? I’m on the Kansas side of Kansas City!😊
  7. Starsister

    Introduce yourself

    Nice to see recent discussion on here! Guess I need to figure out how to get the notifications. I miss my old gay/ lesbian community of many years. I wonder if there is even any sense of community out there anymore. Seems it was gone long before pandemic. Lesbians now days don’t even know we...
  8. Starsister

    A symptom I didn't tell my doctor but should have: phantom smells

    Glad I saw this by accident. I suspect I have this frequently but I’m never sure whether real or not… some situations it would be impossible to know. But now I’ll have to be aware that if I’m complaining about smell in say a motel room, I’ll have to consider it may be phantom? I have sensory...
  9. Starsister

    Mental health: Is ME/CFS Brain Fog consistent with an Attention Deficit Disorder?

    @pattismith My brother is ADHD and I also work with lots of folks with ADHD and have started recognizing some things of myself in them. I’ve had more overt symptoms of ME for 40 years and have noted a morphing or evolution of symptoms over the years. The last few years noting more traits of...
  10. Starsister

    Driving difficulties

    @Spanky88 I learned this was part of the neurological issues we have. Went to a “ Neurological chiropractor” who evaluated me with interesting tests. Confirmed my overstimulation because eyes notable to focus. He gave me some “ eye stabilization” excersizes that I also later found on YouTube...
  11. Starsister

    Tremors. Anything that helps?

    I take propranolol. I have a familial tremor in hands.
  12. Starsister

    Sort of an emergency: brain inflammation crashes while sleeping

    Im so sorry for what you are going through💕and have no great advice. But I also have the skin burning from head to toe.. pretty sure from Small Fiber Neuropathy and I use ice or Cryoderm roll on which cools long enough for me to sleep.. twice as much menthol than Biofreeze. For burning head I...
  13. Starsister

    Relapsed in 2019 with dysautonomia and sheet intolerance. Signs of SFN?

    I have had extreme problem with sheets and any clothes or sensations that has gotten progressively worse over 40 years. Started with burning feet in 80s then hands and eventually all over body, like one big blister from head to toe. Some days all I can do is lay on my side on smooth bamboo...
  14. Starsister

    Temporary paralysis I need your Insights

    I’ll be interested in replies also. I wasn’t on nortryptolin but had similar experience twice. Got up and was like all energy and strength drained from my arms starting at my shoulders. Was unable to move arms, like battery tan out of juice.. but only in arms. Noticed extreme rapid heart beat...
  15. Starsister

    burning pain esp when in PEM

    SFN group https://m.facebook.com/groups/531383293606557/?multi_permalinks=3869411836470336%2C3866392343438952&notif_t=group_activity&notif_id=1620415328199343&ref=m_notif
  16. Starsister

    burning pain esp when in PEM

    I will try but I’m not very skilled!
  17. Starsister

    burning pain esp when in PEM

    I’m on SFN FB group because I’m sure it’s part of my issue.. burning skin all over body but especially the areas that get the most pressure or irritation.. for me my torso hips etc so hurts like heck to sit or lay down. Can’t stand thought of painful EMG or the skin punch test and no treatment...
  18. Starsister

    Fever without high temperature?

    Burning head and face with only very slight fever happens to me often. I finally recognized it as my brain inflammation. Got a “ hat” with ice gel packs and put ice everywhere I can. Helps immediately!
  19. Starsister

    Don't know where to start - feeling confused

    @lookingforanswers4 What I’ve understood from my drs and research however is that the rocking sensation is also a form of vertigo. I’ve had where the room tilts 45 degrees and I fall over, the ones where room spins.. a head over heels tumbling sensation.. where it can feel like I’m being...
  20. Starsister

    Don't know where to start - feeling confused

  21. Starsister

    Don't know where to start - feeling confused

    @lookingforanswers4 Ive had the rocking boat sensations. Part of vertigo.. Ive had ME for 35 years but the the vertigo only started 4 years ago. Try a vestibular physical therapist. And I went to ENT and neurologist for tilt table test. No good answers yet but some find help from vestibular...
  22. Starsister

    Poll: Has anyone lost their ability to enjoy music

    I have such mixed feelings now about my music. I have a huge collection of classical, folk, rock, alternative, etc on records, cassettes and tapes back to 1968. I have always treasured, but most of the time now most makes me irritable, just noise. Depends on how I’m feeling. At times I’m...
  23. Starsister

    Does anyone else finds cold environment to be a life saver?

    @YippeeKi YOW !! and everyone..I read the anti inflammatory benefits of turmeric / curcumin dissipate after a few minutes of cookings, so ive been sprinkling it on cold foods...and popcorn!
  24. Starsister

    Does anyone else finds cold environment to be a life saver?

    Havent posted on here for awhile so dont recall how to highlight parts of above post. But this caught my attention as I more lately have been having trouble with the “ burning brain”. But also my awareness has been raised about inflammation in my body so I now relate some symptoms to...
  25. Starsister

    Paresthesia when eating food

    @blacksunwolves Re Ezekial breads.. u think thats true for all their varieties? I mainly stick to the low carb high protein sprouted on.
  26. Starsister

    Paresthesia when eating food

  27. Starsister

    Paresthesia when eating food

    I have a lot of trouble with what one dr said is parasthesia, another allodynia which seems better fit for me. But I’ve noticed I don’t do so well with carbs, even whole grains like rice or wheat.. but today I tried the Ezekiel brand if multigrain cereal..as I have good luck with their low carb...
  28. Starsister

    Anyone seeing Dr Joseph Brewer in Kansas City?

    Who is Dr Z?
  29. Starsister

    LDN weird side effects

    Oh wow, thank you! It’s amazing how much comes up from PR just on google! This will be my reading for this eve. Thanks for letting me know it’s not just my ineptness with navigating PR, or my messed up brain.:thumbsup:
  30. Starsister

    LDN weird side effects

    I’m so glad to find this thread...I’m doing something wrong trying to use the keyword feature and was getting nothing..but I finally fiund a doc here who soecializes in women’s pain do she does a lot with fibro and suggested the LDN...said all her patients were doing well on it. But it arrived...