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

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Search results

  1. MEG

    The Family Member ME/CFS Prevalence Poll Take II

    my mother had cfs, I have it , my son has it and now my precious four year old grand-daughter has fibro, but we are not convinced it isn't ME
  2. MEG

    Duloxetine/Cymbalta and ME/CFS

    I was prescribed Cymbalta in 2009 for nerve pain, and I believe pain in general. I had a very frightening experience with the medicine. It made me suicidal! I had never before experienced this. I was hospitalized for a four day drug withdrawal, and within 36 hours all symptoms had subsided...
  3. MEG

    I can't afford living on the east coast

    When I built my home in 2008 (just in time!!!!) before the 'collapse', I did ONE thing right. Or at least I think so. I built an apartment downstairs with it's own access. It is just one bedroom, a bath and family room and it's own covered deck. I also put a gas fireplace down there in case...
  4. MEG

    Group home for ME/CFS

    @ Neilk and Maddie..I WAY LOVE VERMONT!!!! AND I LOVE IT SOME MORE! Maybe because I lived there for 30 years. Why did I leave? I got ME/CFS! The cold, cold winters, and rain and always high humidity forced me to move. So here I am in the Smokey Mountains of NC...it is so like Vermont...
  5. MEG

    Chills after BM?

    First of all I hope this has resolved for you. However, I am in agreement with Sparrow. I have a ton of inflammation and low BP and my doctor suspects low blood volume. That said...after I move my bowels, I am shaky, chilled and I become severely weak. I have to spend several hours in bed to...
  6. MEG

    I can't afford living on the east coast

    Asheville? Amazing music and art scene! That of a big city in little ole Asheville. Gee, Obama keeps coming back...three times now! Sushi, you know I love Albuquerque, and Santa Fe where I was lucky enough to live for 8 months. Driving in Asheville? heehee I wonder what type of a problem...
  7. MEG

    I can't afford living on the east coast

    I love the idea of having your van all ready for "naps"... I wish I had done something like that when I was still driving. I feel so badly for both of you...Vincent and taniaaust. I cannot begin to imagine the stress you are both enduring. All I can do is pray that everything just falls into...
  8. MEG

    I can't afford living on the east coast

    Vincent, Your current dilemma is my worst nightmare. I have only moved four times in my 60 years! My latest and I hope to God last, was from VT to NC. I have been in NC for 10 years now. The cost of living here is so low compared to the Northeast. I am in Western NC in the Smokey Mountains...
  9. MEG

    The Family Member ME/CFS Prevalence Poll Take II

    Both my mother and youngest sister died very young from me/cfs. My youngest son has classic symptoms but has not yet been officially diagnosed. I was most happy to participate. My greatest hope is that there are answers and treatments, especially for my son.
  10. MEG

    anyone tried the gupta programme?

    I have several friends who have used the Gupta Programme. None were necessarily impressed enough to recommend it to me when I inquired. One gal did mention she felt it helped in her acceptance of our illness. Nobody has ever claimed that I know of to be made "well" from it. On another note, we...
  11. MEG

    Starting up an international prayer day for ME...

    Tulip, I do agree that a prayer day for ME would be a wonderful addition to the ME Awareness Week. ( I am embarassed I didn't know about that...or had forgotten EEKK!) What is your idea about making it happen? Like Ember, I would love to go to my church and ask for prayer for us...PM me...
  12. MEG

    Comment by 'MEG' in 'I am The Doctor'

    Oh Carrigon, I am ever so sorry to read about your doctor. I have a GP who is totally uneducated about ME, but will basically do what I ask. I had my CFS doctor talk to her...actually BOTH Dr Lapp and Dr Black to little avail:Sign eek:(I was so upset) Some doctors just do not want to learn...
  13. MEG

    Starting up an international prayer day for ME...

    Tulip, Maybe some could volunteer for the Awareness Day in their local communities? Just a thought...
  14. MEG

    Starting up an international prayer day for ME...

    Tulip, This could be a great idea. I am not sure starting with local churches would be the way to go though. Think BIG....just like with starting a business. I see going to actual denominations, with marketing tools (could be simple) and getting the movers and shakers on board with this...
  15. MEG

    Comment by 'MEG' in 'Chronic Fatigue Syndrome: 10 Things Changed Since I Met My Naturopath'

    Oh my gosh Jody, this is wonderful. So inspiring. So uplifting. (((((((BIG HUGS)))))))) I am going to try the Omega 3 oils, and the deep immune stuff, if I can find it. maybe a link to where we can get it...LOL In your spare time girl! Love, Marian
  16. MEG

    Does Vitamin D increase fatigue for you?

    Excellent info...thanks
  17. MEG

    When did you decide you had to use a mobility aid?

    Wonder if this helps.... I recently needed home health care. The Physical Therapist asked me what assistive devices would help. She suggested a four wheel walker, raised commode and wheelchair...each to be used as needed. Guess what!!!! MEDICARE paid for all but $46!!!!!!! For all three...
  18. MEG

    Does Vitamin D increase fatigue for you?

    I am struggling with Vit D also. I get almost zero sunshine/natural light and my levels were low. When I take 3-5000/day, my mood is markedly better!!! It is like an antidepressant for me! However, I am more fatigued!!!! Ohhh, what to do. It does not seem to effect my pain level...I am...
  19. MEG

    Mountain Bike Race to Fund ME/CFS Research

    Sushi, Amazing event, and thanks for the post.
  20. MEG

    Comment by 'MEG' in 'Leibi Kletsky'

    Beautifully written... Such a tragedy... PRAY
  21. MEG

    Is anyone else scared to go to emergency?

    How to get past it???? HHMMMM I'm not sure. I hope someone has some better ideas than I have....mine was to just block them out and take "US" with you. Not too helpful I guess. Do you have a friend who could go with you? I sure do know it is awful...I am "afraid" of the EMT's and...
  22. MEG

    Is anyone else scared to go to emergency?

    Yes Tulip...YES Especially the ambulance guys...EMT's that last asked me if I had been drinking???? I was gasping for air...stumbling, slurred speach. I guess maybe I looked drunk, but I was hypoxic. In the ER they put me on oxygen, and I have been on it ever since. But they are local yokels...
  23. MEG

    Two helpful books

    Never mind.... See you highlighted xrunners!!! Brain fog? Blonde fog?
  24. MEG

    Two helpful books

    "The Way to Love", DeMello is amazing at helping to incorporate the eastern teachings into my Christian life. I recently read Toni Bernhard"s How To Be Sick, and this is the perfect sequel to that book! DeMello takes us deeper, forever digging. Wonderful. Padre Pio, by Ruffin. Amazing. Yes, I...
  25. MEG

    Life Expectancy and CFS/ME

    Dying from CFS???? I think so Hi I just found this thread, and I wish I had found it sooner. I AM afraid of dying soon. My sister died at 49 from CFS, but her death certificate says, cardiomathy, multisystem failure. (Not CFS, so it will not be counted) I am 58, on oxygen, have heart, lung...
  26. MEG

    Kindly asking for help :)

    Willow, she has another thread as well!!!!! Gosh you put energy into your post in defending us...Thanks. Enough said....we do NOT need mental health practioners...and how dare you further traumatize any of us insinuating we need mental health therapies...wierd ones to boot! Quick note to...
  27. MEG

    Kindly asking for help :)

    "hearing the duck" and thx to Madie and max for a belly laugh. Yes, I'll try the "time line, and the regression", and how much does the CD cost? LOL
  28. MEG

    Kindly asking for help :)

    Jennifer, Not to be rude, but I feel the same as ukxmrv. We are a close knit group, and your presence here makes me uncomfortable, as I do not understand why you are here except for your own personal gains. We are Ill, thank you very much.
  29. MEG

    CLINICAL STUDY on KLONOPIN / benzos for CFS?

    To all...this is a most informative thread. I recently tapered myself off of clonazepan. I had taken 4mg (total) per day, in divided doses. I had no side effects that I could see, but I am just going through a period where I am sick and tired of chemicals in my body. So over the course of...
  30. MEG

    Comment by 'MEG' in 'XMRV - The case against contamination'

    Thank you so much. Amazing job.