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  1. ShyestofFlies

    Positive for autoimmunity

    I realize this is a bit wordy so I bolded the important words, sorry about that! If you aren’t on a protocol for autoimmune medication you may be a candidate for the Avise panel. Depending on where you live you might be able to ask your rheumatologist about this panel and if see if it would be...
  2. ShyestofFlies

    Bioidentical hormone replacement therapy the go to in Pennsylvania CAM

    I never did see the doctor I mentioned in the OP, and I want to mention I have nothing against her (I carry a healthy dose of skepticism against all doctors and natural practitioners). The travel distance is over 200 miles for me, so that was partly why I was so skeptical. ((I just don’t want...
  3. ShyestofFlies

    Constantly Changing Generic Medication Manufacturers

    I have this issue with the changing manufacturers causing problems... luckily my pharmacy seems to have stabalized for now with their suppliers. I understand there’s a lot of reasons they switch around and most people needing meds won’t have the same issue as me. I had a not anaphylaxis, but an...
  4. ShyestofFlies

    Small posterior fossa, EDS, related issues

    When they did the test for chiari was it upright/standing or laying down. I have heard there is concern that not being standing results in a false negative in some people.
  5. ShyestofFlies

    Resource Small Fiber Neuropathy Screening List

    I have heard frommthe EDS community that there are reports that they too have higher rates of SFN than the general populous.
  6. ShyestofFlies

    Source of CFS: city vs rural?

    I live in a mostly rural but slowly suburbanizinf area. I was home when I had the virus 2 years ago after which I felt I developed severe ME/CFS. I have thought of myself as a rapid onset post viral case. Thinking back further, I now believe my POTS was present before the ME/CFS. With all...
  7. ShyestofFlies

    Sensory overload and mental crashing

    I have had the "brain poop outs" (I call them that) and usually when I can't think or do anything I try to sleep or rest until I fall asleep. Normally I am fortunate to have somewhat less brain fog than others. Sometimes the amount of sensory stuff just happens enough to switch the brain into "goo."
  8. ShyestofFlies

    How the elderly and the disabled become wards and lose their rights.

    The new yorker is indeed a real publication. It is theoreticaly possible to do this to anyone of any age, but the elderly and disabled are especially vulnerable. One lesson I have learned in life is never put it past abusive people to do whatever the heck they want, and laugh about it later...
  9. ShyestofFlies

    PEM vs Crashing in Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia

    I don't think I actually have PEM on an acute level, more that I have a constant layer of PEM at all times. It isn't always as severe as others, but just a general feeling of malaise/sick/gross/unwell. Being awake/breathing may be the trigger (joke) Think of this as a pyramid/mountain diagram...
  10. ShyestofFlies

    Migraine Summit Poses Opportunities For Fibromyalgia and Chronic Fatigue Syndrome Patients

    Been reading some and it struck me that certain things about the rare hemiplegic migraines in particular have some overlap with some of my crashes that I have identified as the most scary ones (partial paralysis). Given that it has genes I would be interested to see if anyone with ME/CFS has had...
  11. ShyestofFlies

    Fantastic article on ME and the Lightning Process

    LP straight up presents itself (albeit subtlely) as a method to free yourself from a cult community (under which the implication is anyone who believes in ME/CFS/you is in a cult) and that you can fix your life by joining a new cult (aka LP).
  12. ShyestofFlies

    Supplement Vertigo relief

    Glad you found something that helped! my nystagmus seems to kick in every time my eyes close. The vertigo is either very mild and constant or only occurs in flares occassionally that make it overpowering. Seems more common when I crash. Thanks for the recomendation- honestly I appreciate...
  13. ShyestofFlies

    Quell pain relief

    Yeah that isn't bad, in general the company has a 60 day return policy- it doesn't tend to go on sale on amazon. On cvs I got mine 25% off. A few competitors have launched now I've noticed- stay tuned for those... some were cheaper!
  14. ShyestofFlies

    Quell pain relief

    I've never tried a TENS because I was holding out for this. Portability is a big factor to me. Most people said that if it doesn't work in 60 days you should return it. I knocked mine and scratched it on my wheelchair around the house and so I kept mine. I did a lot of fiddling with it settings...
  15. ShyestofFlies

    Supplement Vertigo relief

    Resurrecting this thread to ask if anyone has found any more treatments or what causes their nystagmus and vertigo? Mine was subtle before and now is quite bad, enough that it is moving to the top of the list rather than the endless symptom pile. I ordered some generic dramamine and will let...
  16. ShyestofFlies

    Sanoviv Medical Institute

    So this is a similar idea and not about this specific facility, but anyone consider intentional communities? Haven't done so yet but have been considering a seperatist community. Though many gear specifically towards women or even more specifically- to lesbians and are often not primarily...
  17. ShyestofFlies

    POTS-like symptoms on eating?

    I had POTS-crashing after eating (blood all goes to dogestive area) last year for months. I'd eat and go cold and wake up hours later groggy. :/
  18. ShyestofFlies

    (USA) Senate passes 'right-to-try' bill by unanimous consent 8/3/17 Fox News

    Requesting access isn't the same as given access. I assume the requester must front the money the treatment provider requests, be that through insurance somehow, crowdfunding, personal funding, lottery, leans on their houss, etc.
  19. ShyestofFlies

    Resource [Survey] Before and after onset of me/cfs and fm [Deleted]

    This resource has been removed and is no longer available for download.
  20. ShyestofFlies

    New here... advice on finding Diagnosis/Treatment?

    Hi there @Lycosa Welcome to the forums, sorry to hear you are having struggles with your health also. When I first came here I also wasn't sure if I belonged here, had no diagnosis for my latest and greatest health issue. I personally feel if your symptoms have enough of an overlap to lead you...

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