• 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

  1. J

    POLL: ME/CFS patients who caught COVID: did this make your pre-existing ME/CFS permanently worse, or did you recover from COVID without issue?

    Due to basically being home bound I didn’t get Covid until a couple weeks ago( Sept 2022) . I’m pretty much back to where I was before( moderate) . However the first booster shot permanently put me down about 1/2 a level though, not bedridden but lower than I was.
  2. J

    Dealing with weight gain

    Glad to see this thread. I don’t know what metabolic snafu causes it but I’ve gained every time I’ve had a flare and never lose it . Over 59 lbs this last 6 months. Makes no difference what or how much I eat( gained 20 lbs in a month and could not keep food down , ate, threw up gained, how in...
  3. J

    Dr. Bateman answers IOM questions from the community: Part 1

    Yes, i have been denied twice, first too low ebv titer, second said" you had CFS at one time but no longer" . someone forgot to tell my body that, 27 yrs and still on hold.
  4. J

    Dr. Bateman answers IOM questions from the community: Part 1

    Thank you Dr. Bateman for your hard work on our behalf and continued patience in discussing this report.
  5. J

    Feeling like your entire body is short circuiting...

    I have had the vertigo you are describing. Its like the whole bed is flip flopping around. I think its usually worse with my eyes open but doesnt stop if i close them. Ive had odd perception/ kinetic problems since the begining ie not knowing where a body part is, feeling like i am laying on a...
  6. J

    Hashimoto´s with no antibodies

    I assume you don't realize gluten is in whole wheat, barley ect? Your comment pretty much proves the point of people choosing to ignore sound nutrition due to fadish thinking
  7. J

    Hashimoto´s with no antibodies

    With Hasimotos your thyroid can fluctuation between hyper and hypo so it should be monitered. I can't find the article ( thought I shared it on facebook but didn't see it on my page). I remember it can change gut bacteria which they said could cause immune problems. Also many don't replace the...
  8. J

    Ear Piercing

    Youcan be allergic to the metal. If i wear cheap earrings i get rashes etc. I dont think it would be that widespread but wearing it constantly if you are allergic might eventually cause more problems maybe. I would question if youcould have gotten something from the actual piercing . if you are...
  9. J

    Hashimoto´s with no antibodies

    I have hashimotos and my endocrinologist told me it can fluctuate between high and low with it I noticed you dont eat gluten. Interestingly i just saw an article about how not eating gluten is causing problems in those who do not actually have a gluten intolerance. I of course dont remember the...
  10. J

    My PEM seems to be different from others

    Have you ever checked your blood sugar levels when this happens. Low levels cause a lotof this. I wonder if the exercise is causing a drop. I havent " exercised" for 15 years but if i overdo it, i get a short term total exhaustion followed usually by exacerbation of some symptoms 10-24 hrs...
  11. J

    Cluster outbreaks

    ... no longer hear talk of epidemics perhaps because the germ (virus) has been adapted to the host causing more moderate reactions good night Or more have developed antibodies to it. Personally I think all my immediate relatives have gotten minor bouts but for the most part recovered. These...
  12. J

    Hair suddenly extremely oily- causes?

    Did you start washing your hair more often? Weirdly i find 'my hair seems to adjust to its washing , if i wash it every day ( like that ever happens haha) it needs it every day, if i wash it every 4 days it needs it then. Up to a limit. After 4 days i look like nick nolte in his drunken and...
  13. J

    the dreaded e word

    I don't want to know if you do it, find it beneficial etc. I want to know if anyone has ever seen studies that point to chronic muscle fatigue vs exercise. My left leg in particular fluctuates between almost normal to zero strenght. Its always worse during a relapse but it seems to never be...
  14. J

    Joints crack snap or pop anyone??

    I do recall a good thought i read somewhere. with weird illnesses like ME/CFS sometimes we tend to look for zebras instead of horses when something else arises. We can get just plain old illnesses or problems like everyone else. So its always a good plan to start with common and work up to the...
  15. J

    Joints crack snap or pop anyone??

    1) crackly joints can be a sign of arthritis. When it was first developing , it came and went. It still isn't constant. An xray would detect if thats the problem. A couple of my joints have hypermobility, particularly my right thumb. So far no concrete dx of why. 2)My BP is all over the place...
  16. J

    What Types of Fatigue Do I Experience Poll

    Lol the indignities of this illness! I really think all the therapists thought i was going to collapse then and there, i wasnt so sure my self i wasnt lol. I had it happen to a lesser degree early on in the illness so i knew i just needed to lay down asap. Its always funny to me to see medical...
  17. J

    CFS is a metabolic condition!

    Everything is always"normal range". I haven't had an ebv titer for years, according to ssi, it was" elevated but not enough" thefirst time i filed for disabilty, then the second time "showed i used to have it but donthave it anymore"( same time frame they said it wasnt high enough...
  18. J

    GP 'very unusual to have ME so bad for so long'. Am i the only one?

    Lol how are you supposed to do that
  19. J

    This is how I am different

    Before you jump to ME/CFS have your dr rule Out other things like lupus, chronic infection,maybe eveN RA, MS depending on your symptoms. Many chronic illnesses cause fatigue to varying degrees but many are also .treatable. No one here can diagnose you, just guess and your health is too important...
  20. J

    What Types of Fatigue Do I Experience Poll

    Yep, thats what they said when i took Physical therapy and collapsed into a chair with my entire body shaking after 100 paces lol(i was trying for 150 so i could get to my apartment from the car, didn't work ;).
  21. J

    Rest periods and can CFS people get really well?

    Sorry, i don't agree mainly since i have done what you stated for 17 years with no lasting benefit. I benefited in that it kept some symptons to a minimum, mainly the flu like sore throat, glands not painful, still swollen, not constantly nauseated,may have had a tad more energy, ie dressed but...
  22. J

    What does low blood sugar feel like?

    Actually that is incorrect. With type 2 diabetes you may make an adequate amount of insulin but your body can't utilize it, you may not make enough insulin or both. Hypoglecemia means your blood sugery is low. That can be from not eating, medication, all kinds of reasons and can often be a...
  23. J

    CFS is a metabolic condition!

    She doesn't know, she figures it could be a virus that initially throws the switch but doesn't necessarily feel that is the ulimate cause. Something else could be happening to make our bodies react or overreact to that particular virus we got, rather than it being that particular virus that...
  24. J

    What Types of Fatigue Do I Experience Poll

    I dont see what i call the "suffocating fatigue " listed either. Its when i have such a hard time breathing cause just moving my chest muscles to breath, requires too much energy. It feels differently than the others but i agree, i dont really understand why some are lumped in with"fatigue"...
  25. J

    good article for differentiating ME/CFS from illnesses

    I copied the link from Chrome and it works on that ( tried it again just now)but maybe not firefox? Or couldbe the site was down ?
  26. J

    What Types of Fatigue Do I Experience Poll

    Yes, fatigue is not the right word. I prefer stamina,(not a whole lot better) simply due to fatigue=sleepy or normal tiredness which has nothing to do with what i have.
  27. J

    What Types of Fatigue Do I Experience Poll

    I used to get flu like constantly. After year 10 major crash i started pacing and rarely get it now but the whole illness changed after 10 years so not sure why, pacing or just disease process. Now i have sore throat aches but not much nausea/vomiting like yrs 1-9.
  28. J

    The Exercise Catch 22

    I was just thinking of this. Long story but knee replacement led to 12 weeks of physical therapy. Even the therapists recognized the damage the extensive therapy had to my overall health. Neccessary to be able to have any range of motion in my leg but worsing my overall state. Interestinly even...
  29. J

    Humidity wipes me out.. what to do?

    Heat bothers me much more than humidity but my thought was mold levels increase with dampness. I'd make sure a dehumidifier was scrupulously cleaned. Mold is bad news for allergies/ sinuses.
  30. J

    Feel awful after naps

    Personally if i nap in the afternoon i sleep all afternoon and feel awful. I cant wake up. I think the awful feeling is from deep sleep rather than just the short nap most drs recommend in general. If i wake up in the night i feel ok just regretably usually can't get back to sleep period.