• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. Raindrop

    Best way to educate my doctor and respond to him/her

    I really appreciate this conversation, which I just now had the energy to join. (Sorry for being late on this1) The CCC primer is mentioned quite a few times. So VERY sorry for my ignorance, but is the CCC the same as the International Consensus Panel? Can anyone tell me what the CCC is, and...
  2. Raindrop

    Broken cruciate ligaments in both knees and also cervicals for no reason. Anyone?

    So sorry to hear about all of this. I have ligament tears in my knee (believe it is an ACL tear) and knee instability. I have to walk and sit and move very carefully. If I don't there is joint misplacement and it is so painful I "yelp"!! Very frightening. I am told there is nothing to do...
  3. Raindrop

    Toxin help...termite fumigation

    Ah....you are bringing up a subject I have dealt with repeatedly and may soon face again. Unfortunately, many of us folks who are sick end up without the monthly resources to be in anything but older apartments. I have moved several times, and after several of these moves, they have scheduled...
  4. Raindrop

    Coffee = poor fat digestion

    I know from having GERD (Gastro Esophageal Reflux Disease) that two of the things that you need to stay away from if you have mild to moderate GERD are Fatty Foods and Coffee (because it is acidic). If you are drinking a whole three cups of coffee, surely you are taking in a lot of acid...
  5. Raindrop

    Blood sucking kissing bug:chagas in USA

    Wow! As if we don't already have enough viruses to worry about! Interesting how it can go "underground" and then cause havoc. In a way has some similarities to Lyme. Thanks for giving awareness.
  6. Raindrop

    After 21 months i am still waiting to see a Rheumatologist in Wales (UK)

    Justy, Several things I had thought of were by now mentioned by other people. I find the ANA test confusing and non-specific. Sure seems to myself that I have some strong Lupus symptoms, and I keep asking about 1 x year for the test. However, I am just told it did not show positive for...
  7. Raindrop

    Not Boom and Bust - an Epiphany.

    Hi, Justy, I have a terribly bad immune system. I catch every cold/ every flu etc. When I catch something I am VERY ill,and much more so than others who get sick. I also often have a very high fever (i.e. sometimes 103 when normally have sub-normal 96 or 97 degrees.) Twice I should have gone...
  8. Raindrop

    Collecting data from users

    Yes, thanks.....Do you have experience with this group?
  9. Raindrop

    Collecting data from users

    I know there is something called Heel Click where they get a lot of specific data from you on your symptoms etc. and then they put people into categories where you can communicate with different people in your same type/level of illness and compare what has worked/not worked etc. I have been...
  10. Raindrop

    2 types of ME/CFS? A short, informal poll

    Did you have IBS before or early on in your symptoms? YES DEFINITELY & STILL DO! Do you have sinus problems? HUGELY!!! ALWAYS DID....GETTING WORSE Do you have autoimmune disease also? (Perhaps I could say "another" but that's a bit loaded) UnDIAGNOSED BUT SUSPECTED Do you have MCS...
  11. Raindrop

    How Exactly is the NHS ruling out Cancer before diagnosing CFSME?

    Don't understand the question. You mean NHS in USA or Britain? So sorry if I seem clueless. Is there a history to this issue to understand before answering this? Help me out....thanks!
  12. Raindrop

    successful treatment for light/noise sensitivity?

    I just don't know anything about D Ribose.....is it important to buy a certain type? What type would I get and how much of it/ dosage to try? Advice would be helpful. Also wondering if any others have also found it helpful with noise sensitivity ?
  13. Raindrop

    What type of vacation or break do you still manage to do?

    Continuing here, this is an interesting topic and the responses just show how diversified the range is of wellness/ illness in this group. Personally, all I can usually do is DREAM of a day when I can travel, as I sorely, sorely miss it SO so much. Even when I have gone away a few hours out of...
  14. Raindrop

    What type of vacation or break do you still manage to do?

    For those of us with serious immunity issues, cruises are really a bad, bad idea. This hasn't been mentioned. When a serious virus (ie the Norovirus ) begins to spread on a cruise ship, it's not a place I would want to be. Viruses can spread like WILDFIRE on ships. The last time I...
  15. Raindrop

    ME: what shows up in brain MRI scans?

    SPECT Scan many yrs ago for me showed up a lot of problems very clearly. The prob is that a lot of neurologists do not respect the SPECt like the MRI. Blood flow issues can change hour to hour or day to day also, and surely we know this from experience with our own brains. The new Japanese...
  16. Raindrop

    Has anyone been completely cured of CFS?

    Dster, Fascinated! Can you tell me how long you were ill and what Illnesses you believe you have had. Also severity level and level of functioning prior (maybe a brief description?) Have you always been working even at your pre-"cure" stage? What is the cost and time commitment of the...
  17. Raindrop

    Immunologist

    Most Immunologists don't "get it", but worth going anyway. I am not sure what your specific goals for the apt are. However, I would definitely have the doctor run the IGg, IgA, IgE,IgM Immunoglobulin panel. She did this for me after year and years of very abnormal HIGH iGg and a very serious...
  18. Raindrop

    Pets for chronic illness. Has anyone benefited from them?

    Jen, I SO related to what you wrote. I know what you mean about pets giving a reason to exist. I also know how hard it was for my dog's entire life time (long) to have to have a (BIG) dog in an apartment the ENTIRE time!!! I used to site my experience to people who (are healthy) and say "they...
  19. Raindrop

    Pets for chronic illness. Has anyone benefited from them?

    Thanks, Countrygirl. Ah....a long, silky haired daschund!! I have thought about getting one, only realize I would have to lift the little dog up all the time. I have POTS. Did you ever find this to be a problem?? Or the back issues with your breed of dog and getting up on your couch or bed...
  20. Raindrop

    Pets for chronic illness. Has anyone benefited from them?

    I can't say enough about the emotional benefits of having a dog in my case. I wanted a big dog my entire life and got her only a few years before becoming sick. Sometimes I wonder if there is a link. I think she had Lyme and I do as well. However, words cannot express just HOW much I loved...
  21. Raindrop

    Feeling better at night

    What is RS2??? Can you site the basics and if many people have used whatever it is for this? Haven't heard about it.
  22. Raindrop

    Feeling better at night

    I always was a night owl, but since becoming very ill and disabled, it has gotten extreme. I feel horrid all day and have to push hard to be able to leave the house. Usually the longer the day goes on (unless I am really crashed from PEM) the better I feel. I am my best at night and have...
  23. Raindrop

    successful treatment for light/noise sensitivity?

    Grigor, Have you or anyone else here actually tried the suggestions for 10mg Lutein and 2mg Zeaxanthin per day for light sensitivity? I am pretty desperate, and I am sure you are as well. People (excepting my GP doctor who totally gets it) have a hard time grasping how low or non-existant the...
  24. Raindrop

    Sunlight Sensitivity

    Maryb - I TOTALLY agree with EVERYTHING you described!!! TV is getting harder and harder to watch with all the reality shows and web cams with so much movement. If you watch things like "The Voice", I just go nuts. Like why can't we JUST hear the voices? Why does there have to be SO much...
  25. Raindrop

    Sunlight Sensitivity

    To "Tired of being sick".... yes, that was perfectly stated! Sunlight is like Kryptonite to me as well!
  26. Raindrop

    Sunlight Sensitivity

    Where to start with this....!!! I have great sensitivity to lights in general - all lights - but I am HUGELY bad under fluorescents. Can barely go shopping anywhere, as all places have bright fluorescents everywhere. I wear huge brimmed hats and dark glasses (and cool clothing). STILL, I...
  27. Raindrop

    Who feels BETTER for eating.

    So, Little Bluestem, are you saying that 3.4oz is ALL you can eat *per DAY* or per serving? The Docs you are talking about... were these ME/CFS drs?
  28. Raindrop

    Who feels BETTER for eating.

    All very fascinating how different we all are!! Whereas for you, there must be a few hours before eating, for me, I am RAVENOUS and blood sugar very low when I get up. Even at night, I will be unable to sleep if haven't eaten before I go to bed. So anyway, I think we can say that Eggs AND...
  29. Raindrop

    Who feels BETTER for eating.

    Just looked up subject of weight loss and energy related to Eggs AM. There is a LOT on this!! Here's a snippet: Study Title: Adults who eat eggs for breakfast lose 65 percent more weight Study Abstract: From press release: New research confirms that eating eggs boosts a healthy weight loss...
  30. Raindrop

    Who feels BETTER for eating.

    My goodness!! This is DEFINITELY confirmation for eating a large first meal AM!!! Amazing that you eat all of that - 4 or 5 eggs and all of it and that it works so well.... I would like to see if any studies on this have been done. BTW -- Justy and others.....for a while I was trying hard to...