• 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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    Newbie searching for a home

    PS Sorry I mixed up infectious with inflammatory. Inflammation can certainly play a role in I wish you the best... A
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    Newbie searching for a home

    Dear Hipha, I understand your frustration....it is maddening to have symptoms with no known cause. However, I listed all my symptoms to give you a better idea of this disorder: most notably it involves small fiber nerves throughout the body....resulting in deregulation of many...
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    Newbie searching for a home

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    Newbie searching for a home

    Just a note: CFS/ME is not a condition covered by the "dysautonomia, umbrella" because it is not now considered to be a disorder of the autonomic nervous system. However, there are people diagnosed with ME who also have autonomic system disorders. It's not clear if these are comorbid , or if...
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    Newbie searching for a home

    Hi, I'm so sorry if I sounded unsure about your symptoms.....for I don't know you at all, and I am not a diagnostician in any way. My 2 cents is worth just about that, perhaps less! I can only speak with some knowledge about my own experience. In my case, it appears I had a neurotoxic...
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    Newbie searching for a home

    Thinking it over, I am not sure about the dysautonomia hypothesis (except for your drug sensitivities). However, if you would like more information, including that prepared for physicians, you can go to the DINET website I noted earlier. I also realized you have not said whether you had your...
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    Newbie searching for a home

    Well I have depression, anxiety, and dysautonomia. First of all, I consider all of these to be neurological disorders. Drives me nuts (so to speak) that there is such a separation between them in medical practice and in people's minds. The stigma is great for the first two, but I think...
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    FQ antibiotics toxicity - a light bulb moment?

    Dear Aaron, Toxins can lurk about in body fat for months, but nerve damage does not recede when the toxins are gone. Jury is out about recovery: as noted, after a year I'm better in some ways and worse in others. I consulted about a lawsuit, but decided that fighting about anything...
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    Resignation

    I have really bad insomnia; typical with dysautonomia. Sleep meds: I do take a baby dose of Nortriptyline (10mg.) In morning (also for pain). Also, 7.5 mg. of Mirtazipine at night with .25 mg Klonopin. Almost like homeopathy. I repeat Klonopin when I wake during the night: up to . 75 mg...
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    My story so far ...

    I also second tests for dysautonomia. This would include biopsies for small fibre neuropathy: could explain pain. Pain, however, is decidedly weird: buzzing, burning, tingling. But I also have sharp pain in muscles. I'm dropping dishes like crazy too. MRI will show nothing. The fact you...
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    FQ antibiotics toxicity - a light bulb moment?

    Hi Ginger, I'm sorry, no idea you are in a wheelchair. You mention you will see a dysautonomia specialist (rare birds). I am in NYC and would be happy to share my experiences here (good and bad) with you. I'm stll toying with the idea of going to Vanderbilt or Mayo -- big bucks but one stop...
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    FQ antibiotics toxicity - a light bulb moment?

    Dear Ginger, Interestingly, my first definitive indication something was awry was when I had anaphylaxis when taking amoxicillin. Predated the anaphylaxis symptoms I had with my AD medications by a few months.... (that and lethal levels of HBP, and uneducated DR. precipitated the abrupt...
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    FQ antibiotics toxicity - a light bulb moment?

    I'm new on this site because my profound fatigue is the most disabling of all my symptoms.....not much I can do except research. I just now wish to draw attention to dysautonomia, which is described here. It is a deregulation of the "fight or flight" response, and it can be completely...
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    Psychiatrists -- People with authority and PACE.

    I agree with you Esther. I need to look more closely the studied model. It is hard to maintain a sense of agency while sick, and we forced to do so if we are to find sympathetic and knowledgeable care-givers of any sort.
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    Psychiatrists -- People with authority and PACE.

    I just terminated a six-months course of CBT. No brainwashing at all....I had a flexible and intelligent therapist. The basic notion was to track activities and my feelings about them on an hourly basis, and to build upon those that feel good. My problem (which is a criticism of this approach)...