• 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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  1. M

    HELP! Daughter with ME falling asleep at the wheel

    Dainty, I think you raise a good point because I really don't know anything about the prescription meds I was referring to. I would have said that the government makes sure medicines are safe before approving them BEFORE I got ME, but I sure know better than that now. Vincent, I am sorry if...
  2. M

    HELP! Daughter with ME falling asleep at the wheel

    Thank you to everyone, and I, myself, had to quit driving due to ME so I understand the importance of being mentally alert when driving. However, my daughter has a full scholarship and child support from my ex who is looking for ANY excuse to cut her off. If she stopped attending now, she...
  3. M

    HELP! Daughter with ME falling asleep at the wheel

    My daughter has to commute to college 1and 1/2 hours one way on Tuesday and Thursday. Our local primary doc just told her that "everyone gets tired and it is just part of working and going to school." They actually told her to try a lot of caffeine and to start smoking (I am not making this...
  4. M

    Need Encouragement--Lots of Pain, Lots of Crying

    Thanks, Francelle. Actually, in Florida homeschooling is wonderful. The books and teachers are all provided free online and the "parent/teacher" meetings are by phone. So, no more going to the school for PTA or fundraisers. The teachers are all very helpful and really willing to help my ADD...
  5. M

    Need Encouragement--Lots of Pain, Lots of Crying

    I have noticed that past crashes were frequently accompanied by a lot of crying - heavy crying. Well, the last couple of days, I have been very teary and today by evening, I was just plain sobbing. I dreamed last night that I was well and that I lived on my own and had friends over. There was...
  6. M

    Really Sore Swollen Lymph Glands Underarms

    Thank you both. I am on Imunovir and Famvir, but I have had a sinus infection (seems like I am prone to them). Maybe the sinus infection with all the other viral stuff we ME folks have is overloading my glands? Guess the cyst thing is just an infected pore. I get the weirdest symptoms! Feel...
  7. M

    Really Sore Swollen Lymph Glands Underarms

    I have had swollen lymph glands in my neck for years but the ones under my arms are less frequent. Lately, they have been sore in both armpits and it is starting to make me a bit worried. Anyone else have these for weeks on end? Is there anything to ease the soreness? Also, I have had a cold...
  8. M

    Whats with the symptom shifts?

    Symptom Shifts Well, PokerPlayer, I hope this makes sense as I am quite foggy at the moment. But I have noticed that my symptoms shift over the short run as you seem to be experiencing and very distinctly over the long run, as well. I am glad you brought this up as it is something I've...
  9. M

    How do you help a spouse understand that symptoms are really "that bad"?

    Thank you for your wonderful, caring and thoughtful replies. "Some of pwME who are not bedridden, risk ending up there, because they may be too proud or un acustomed to asking for help or to have their needs met and or do not wish to acknowledge that have been handed a life altering disability...
  10. M

    HELP Anyone go to the hospital/home health nurse during a scary flare?

    I haven't felt this sick in a long time. I mean I'm always sick but this is scary. I had two very stressful days and didn't get enough sleep and now I just feel like I need nursing care. Not sure how to go about it or if I am expecting too much. Any thoughts? Excruciating pain and not...
  11. M

    How do you help a spouse understand that symptoms are really "that bad"?

    Two days in a row now, my husband made appointments for me or one of the children at a morning time. I cannot take anyone anywhere at these hours without profound consequences and immediate symptoms like dizziness and horrible nausea. He said today I just "wouldn't get up" not that I couldn't...
  12. M

    What Are Your Most Amusing (Or Disconcerting) Brain Fog Experiences?

    Didn't recognize a familiar face I just had to jump in here. Yesterday I sent my 17 year old on a wild goose chase to her dental appointment in another town (one hour drive) - except that her appointment was actually today. Uh-oh! Then there was the memorable (and frightening) time when I...
  13. M

    NPR piece on Lancet article re: PACE study

    Saw this same sickening piece in Medscape today I subscribe to Medscape for news on cfs that is reported to MDs. They sent me a "topic alert" in my email about this study, and it is truly nauseating - especially since this thing was delivered to the email boxes of every interested MD. These...
  14. M

    Nominate WPI for $200,000 from American Express

    Voted I just voted. Thank you for making it possible to do even with brain fog.
  15. M

    My appointment with Dr. Klimas was wonderful

    My daughter just reminded me that we didn't take temperature readings at all, just BP and our pulse. Sorry for the confusion.
  16. M

    My appointment with Dr. Klimas was wonderful

    Before our appointment, my daughter and I were asked to record our first morning temperature and our BP before getting out of bed and BP again in five or ten minutes. Dr. Klimas felt we both have low blood volume and orthostatic intolerance/POTS. Dr. Klimas also said that all of the systems of...
  17. M

    My appointment with Dr. Klimas was wonderful

    Latest Update on Our Visit I appreciate all of the responses to my post and would like to echo what others have said - Dr. Klimas does have two practices. The first practice is at the University of Miami. The waiting list is only long if one must see Dr. Klimas. I have heard good things...
  18. M

    My appointment with Dr. Klimas was wonderful

    My 17 year old daughter and I had appointments on the same day with Dr. Klimas. We were both very excited to see such a knowledgeable doctor. We were not disappointed. Her nurse practitioner is gentle, kind and very insightful. She took my initial history while Dr. Klimas took my...
  19. M

    Do you have scoliosis, double jointed, MVPS?Odd overlap- Connective Tissue Disorders?

    That is a good insight. I never thought about all the "eye procedures" that involve surgery, like Lasik. I wonder if cataract surgery is okay. Sooner or later, a lot of people have to have them removed. What do you think?
  20. M

    Do you have scoliosis, double jointed, MVPS?Odd overlap- Connective Tissue Disorders?

    Coxy, please let us know what Judy Whittemore tells you in the way of more information. Also, I am wondering if anyone has an odd gait - "pigeon toed" or feet pointed outward? I guess it could be a result of scoliosis, but my daughter has one foot turned at about a 45 degree angle when she...
  21. M

    Do you have scoliosis, double jointed, MVPS?Odd overlap- Connective Tissue Disorders?

    Very Interesting Discussion Thank you to everyone who has responded. taniaaust1, you indicated there is a subset of CFS patients that have EDS. Could you tell us a little more about that and where one can find information about it? As several of you mentioned, I also thought my...
  22. M

    Do you have scoliosis, double jointed, MVPS?Odd overlap- Connective Tissue Disorders?

    I was reading a journal article on HDCT's and noticed an amazing similarity in symptoms. There are at least 3 generations of CFS sufferers in my family. I am listing the symptoms that are in most if not all 3 generations and the connective tissue disorder involved in the hope that some of you...
  23. M

    Start a List of Doctors who Treat Mulv Related Viruses (Human Gamma Retro Virus)?

    ukxmrv, maybe you should post your question about Dr. Enlander as a separate thread. I don't know the answer, but I don't think you will find out with your question buried within this thread. Just my thought. Hope you find out.
  24. M

    PCP Doc in Tallahassee or general area?

    I live just south of Tallahassee. There is a dr mentioned on Cheney's website as being the "premier internal doctor" in Tallahassee (see "testimonials" www.cheneyclinic.com). The Clinic says they will not reveal the name of the dr. with whom they have a relationship unless I start going to...