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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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Search results

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    Gastric Issues related to CFS/EBV

    Thank you alll for your replies. I did see a GI who ran a number of tests including stool and blood tests, everything came back normal. How can this be? How is vomiting every othere day, daily dirreaha, constant nausea, inablility to eat weakness for 4 months etc be normal?!? Does anyone have...
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    Gastric Issues related to CFS/EBV

    Hello, I have had CFS for 33 years with classic sysmptoms, - lymph swelling and severe pain, sore throat, love grade fever etc. and have managed Ok, however for the past few weeks I have been having severe gastric issues (no meds except thyroid and small amounts of xanax occassionally for...
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    Is CFS a chronic inflammation? (Herbs)

    I miss being able to exercise so much (although I had to force myself when I was fully able) It soothed so much stress and I would give anything to be able to do it now. When I do physical exertion my stomach swells a dress size and my underarms swell that I can't hold my arms straight dow...
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    Swollen Painful Lymph Nodes All Over Body Not Showing Up on CT Scans

    I have posted a bit about this before especially in my abdomen but I have swollen lymph nodes VISIBLE from my cheeks to my thighs. They swell under my chin to the size of golfballs and inhibit my speaking. My cheeks the salvia glands swell to the point I can't smile. My abdomenal glands swell...
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    Extremely Uncomfortable Swollen Abdomen

    Hello, In addition to swollen, painful lymph nodes all over my body (which did show abnormal in an iridium WBC scan) In recent years I have developed terrible swelling and pressure in my torso, mainly my upper abdomen. It has expanded almost 15 inches in the past 18 months with the exception...
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    Lymphadenectomy Negative for Viral/Bacteria - Where to Go From Here

    One of my worst symtoms of having lived with CFS for 30 years this past February is painful, very swollen lymph nodes all over my body which was confirmed by WBC Nuclear scan describing them as having "unexpected high activity" all over the body (some areas worse than others) I finally had...
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    Advice with Insurance Company on Short Term Work Leave

    I have had CFS for over 25 years and was able to manage it so that I could work full-time with a job that had a lot of flexibility with control over my time and ability to manage my illness. I took a turn for the worse in 2012 and have since been re-tested for a variety of viruses and...
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    Ascites

    I am seeing MD's so far
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    Ascites

    No, absolutely no changes, in fact it was one the easiest times of my life because I was on a 2 year work sabbatical and very little stress or physical activity. The only change was hormonal. I started Valcyte two years after my symptoms turned worse and I have had one coffee enema, perhaps I...
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    Ascites

    I I do plan on seeing a physician about specifically about it. However I have told all every doctor that I have seen in the last three years the pain and swelling, particularly in my torso was the worst issues I was dealing with and no one seemed overly concerned, probably because my liver...
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    Ascites

    Hello, I have had CFS for 28 years 3 years ago it took a significant turn for the worse (which I believe was from hormonal changes) the symptoms included increase lymph node swelling and pain and my entire torso was swelled to the point where the pressure was so great I sometimes could not...
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    Dr Lerner or Levine

    I hope this is not too redundant as I know there are several posts on these doctors but I live abroad and have decided to visit the US and due in part to logistics have decided on one of these two and am trying to decide which would be best. Previous testing has shown that I do have active...
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    LDC Dosage and Anti Virals Question

    Thanks for the response, can you share your LDN dosage? I am a little worried about the amount especially with no working up to it.
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    CFS and Rheumatoid arthritis

    I have had CFS for 27 years and was also diagnosed with RA, I have started LDN which is supposed to help. I am on 5mg for the past 12 days. I will keep you posted if I find relief.
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    LDC Dosage and Anti Virals Question

    Hello, I hope this is the right place to ask these questions. Apologies if it should go elsewhere. My doctor recently started me on 5mgs of LDN, no gradual increase. I have been on 12 days now and don't have noticeable side effects. MY symptoms seen to remain the same, however I do think I am...
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    Worse or better after menopause?

    Thanks Lisa, I appreciate the response, could you please tell me the HRT that you are using? Perhaps I can discuss the treatment with my doctor.
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    Worse or better after menopause?

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    Worse or better after menopause?

    I hope this is in the right forum category, apologies if isn't. I have had CFS/ME for 27 years this year. My ME/CFS symptoms always followed a pattern of being dramatically worse 5-6 days before ovulation (in addition to getting worse with high emotional/physical stress). I noticed this...