• 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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Search results

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    Is your worst fatigue in the morning too?

    ‘My routine mirrors your description. Add systemic pain.
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    WTF is this…

    I think it’s working now… MERRY CHRISTMAS, ALL!!!
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    WTF is this…

    ?…retupmoc gnad siht xif ot woh wonk enoyna
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    Reaction to local anaesthetic

    For readers of this thread there’s an interesting discussion of the POSITIVE affects of Nitrous Oxide on MECFS when used with local anesthesia for dental work, and other application anomalies: Dr. Jay Goldstein's Rapid Remission ME/CFS Treatments.
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    The moderator of Reddit r/cfsme & r/mecfs pushes CBT and brain retraining and GET and bans you if you say something about it.

    Great work, as usual, @Hip. I, too got banned there after I took exception to some knucklehead bating me into a confrontation then espousing false information. I complained to execs in San Francisco with documentation. I was told they don’t override moderator decisions on a local forum. It’s...
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    Yes, it‘s hard to argue against the potential problems AND withdrawal, albeit anecdotal, “might cause… .” OTOH, pragmatically, if flipping on the light switch reduces symptoms… ? I’m not selling yet-to-be-discovered other dimension cosmic forces but relief is welcome.🤷🏼
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    I completely understand your trepidation. OTOH, I’ll share my experience. I was getting worse in early ‘90’s… . Dr started me on Klonopin, Zoloft and prednisone (every other day)…per Dr Paul Cheney’s articles. I began feeling better… I stayed with Klonopin and Zoloft for 30 years, able to...
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    FWIW, I’m throwing in my 2 cents, after having been to Incline Village 35 years ago, then 6 months later coming down with this plague, CFS, ME, whatever It is. How to perceive it, in layman’s terms, from one who has chased relief all these years? Consider MECFS, a neurological disorder...
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    Terrible and expensive experience with Dr. Kenny De Meirleir

    @Algo Good advice. Thorough preparation and understanding of your chances to prevail can secure the objective and save a lot of money and grief. To paraphrase from the Art of War: the wise king prevails over his adversaries without having to draw his sword! (Sic, but he is ready to cut his...
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    Terrible and expensive experience with Dr. Kenny De Meirleir

    @hmnr asg That’s surely understandable. OTOH, a federal agency is charged with protecting the public... . Also, in addition to pro bono legal efforts there are any number of lawyers who would evaluate the worth of such a case on a contingency basis in cold, hard numbers. I retired from a...
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    Terrible and expensive experience with Dr. Kenny De Meirleir

    @Hip Well said and I couldn’t agree more. I regularly get spam soliciting purchases for strangest concoctions of vitamins and weeds that promise to cure everything from hemorrhoids to loquacious mothers-in-law. How they stay in business in beyond the pale!
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    Terrible and expensive experience with Dr. Kenny De Meirleir

    If an enterprise is doing business over state lines it is likely subject to FTC governance. You might want to check there about piercing the illusive shields of protection.
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    Terrible and expensive experience with Dr. Kenny De Meirleir

    I hate to hear that a fellow PWC has had such a regrettable experience after having sought him out in good faith at considerable expense. Medicine had its heyday in the 1950’s polio era with hard work in overcoming the proliferation of the ‘iron lung.’ Dr Jonas Salk, et al were hailed as...
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    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Yo Cort, does this mean you CAN teach an old dog new tricks? 😉 I‘ve been tardy here for any number of reasons, most correlated to what @Sing so eloquently wrote but I’ll do better now that you’re back in the saddle. I was zapped at HRF... . I don’t know how you do it but great to see you...
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    RemissionBiome

    Last month I had a Hematologist do a blood work up. He threw a net, figuratively to determine if some area of concern would emerge. There were a couple of anomalies but not as yet identifying any specific antibody treatment indicators, I think. I see from your Vlog that you’ve kept a lot of...
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    SEID vs CFS vs ME

    Pragmatically, I would take a psychiatric diagnosis IF the attendant protocol would mitigate the CFS Condition. FWIW, I went through therapy on/off for 25 years and examined the emotional elements. In the end, stress (of different sorts) was about the most likely of causative or ongoing factors.
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    SEID vs CFS vs ME

    I just reread this thread and was once again left miffed with doctors… . When I convey to a doctor that I have CFS (by any moniker) and s/he replies “oh, yea, I get that, too,” I know a bumpy ride is in the offing, or the end is near!” However, before the ensuing clarification I do respond...
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    RemissionBiome

    @LINE I appreciate your reference to the studies and your comments. In addition to research results I’m really interested in finding some hands on experience with antibiotics that have helped PWCs. Sure, please link your videos. Thanks and regards.
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    RemissionBiome

    I am curious as to the major gut symptoms that plague other PWCs? In my case it’s IBS, with the larger symptoms being severe anxiety in the stomach, expressed as nervous jitters and tightness and bloating along with ongoing constipation. It gets progressively worse with mental stress, even...
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    I have developed an arythmia

    ‘Thanks. My heartbeat got down to every 2 to 4 seconds. Cardiologist suggested pacemaker to limit the heartbeat LOW at 60 bpm But it does not limit upper end. I think? I feel somewhat better but candidly, i don’t even notice it.
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    I have developed an arythmia

    I am a long term PWC and developed heart issues along the way, recently. I’m pretty well informed and tend to be a DIYer on health but errors can AND do creep in… . A long story short - it really would be worth your effort to at least get another GP involved for a reference to a cardiologist...
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    Tips for Finding Reliable Prescription-Free Online Pharmacies

    You might want to reconsider bitcoin, e.g. Coinbase.com. I avoided it years ago when it was onerous. It’s now pretty easy to set up links, buy it and have it transferred to your account. Then, when using it there’s a simple transfer link to pay merchant. It’s now mostly automatic; few...
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    Visible symptom tracker app

    Here is another option that is ready-to-use for the Apple IOS platform, i.e. iPad, iPhone et al. https://apps.apple.com/us/app/manage-my-pain/id1444320523 It is customizable for a wide range of symptoms and illnesses, including CFS and it can print graphs and other reports. I would rate the...
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    Clonazepam (Klonopin) stops my symptoms almost completely

    I sure would NOT stop her Ambien use at her age, given her background of addiction to it. I think I posted where I went cold turkey from Ambien AND Klonopin last year after 30+ years using both. I’m in late 70’s and I’m just getting where I sleep some and can function. It’s been a yet-to-end...
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    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    Re GAD (generalized anxiety disorder) I’m wondering if others feel these same symptoms which are really distressing: adrenaline in the GI system with stomach churning; severe sleep disturbance due to adrenaline flow, with racing thoughts; emotional state in constant fight or flight status?
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    Anyone else feel the worst first thing in the morning?

    Definitely feel worse in the mornings and it takes a couple of hours to come to. IMO, our poor sleep is symptomatic of being up regulated, our immune systems being in the fight/fight state. In my case I am producing a lot of adrenaline constantly which I can feel, especially at night. It...
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    Tips for Finding Reliable Prescription-Free Online Pharmacies

    If you’re still considering Inhouse Pharmacy… . I can’t say enough good things about them: fair selection (NO controlled substances), competitive prices, reasonable turnaround time. They even rendered personal assistance by holding my order while I awaited advice to add additional rxs. Be...
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    Clonazepam (Klonopin) stops my symptoms almost completely

    Having had experience with both benzos led me to observe that Klonopin had a more pronounced, observable affect, in shorter time, perhaps because of the shorter half life. OTOH Valium‘s onset seemed smoother and less noticeable.
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    Thoughts inducing PEM

    So true. Words are symbols of thought; a conversation can zap me because it’s thinking. Then worry. ‘all worry is thinking but not all thinking is worry. Work enters the equation somewhere; maybe all thinking is work… .
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    Clonazepam (Klonopin) stops my symptoms almost completely

    @SlamDancin. FWIW, my long term use was largely with Klonopin, with a switch to Valium the last 2 years prior to stopping use of these as well as Ambien - a very severe withdrawal, got close to ‘the edge.’