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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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    can you touch your nose with your tongue?

    Hi Ally, Sorry for the slow reply, I haven't had much extra time to check out the forum lately. No, I don't have a dx. I wouldn't even know who to get one from! The medical community where I live is pretty conservative - if there isn't a lab test for a disease, it doesn't exist here.
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    UK, The Times, 23 Apr: 'Biological breakthrough offers fresh hope to ME sufferers

    While doing some reading on another topic, I came across the following article: Mito-conundrum: unraveling environmental effects on mitochondria. Schmidt CW; Environmental Health Perspectives, 2010 Jul; 118 (7): A292-7. Here are some interesting excerpts that are relevant to this thread...
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    can you touch your nose with your tongue?

    Here is another fun feature of EDS, piezogenic pedal papules. Medscape defines them as, "painful or asymptomatic papules of the feet and wrists that result from herniation of fat through the dermis. They are common, nonhereditary, and usually are not the result of an inherent connective tissue...
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    can you touch your nose with your tongue?

    Thanks, Ally. This is great info. Interestingly, I've been doing most of these things for most of my life, just intuitively because they make me feel better! I haven't tried the cold packs, though - I will in the future. I did read through the EDS thread as well as some other EDS sites and Dr...
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    can you touch your nose with your tongue?

    Hi Ally, I agree that the more people diagnosed the better, but I'm wondering what, if any benefit you've gotten from finally getting a diagnosis? As I understand it there are few treatments for EDS. Have you found any help since your diagnosis?
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    can you touch your nose with your tongue?

    I can. In fact, at nearly 50 years old I still score an easy 9 on the Beighton Hypermobility measure. My hips pop. My sternum dislocates if I laugh too hard. I can dislocate my thumbs at will. I have had varicose veins since age 16... I've got it all going on hypermobility-wise. My father...
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    Does anyone know a healthy vacation spa/getaway for CFS?

    I'm a little late to this thread, but I recommend the spa at Stoweflake in Stowe, VT. The spa has a sauna, hot tubs, an artificial waterfall (!), and a salt water pool. They offer all kinds of spa treatments from hot stone massage to ayurvedic treatments and there is a labyrinth in the...