• 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. H

    Has Anyone Seen Dr. Kogelnik?

    I've been considering going to Dr. K since he is relatively close to me. I've had CFS over 20 years and the only thing that ever helped was big infusions of Gamma Globulin every other week. My old doctor retired so I don't know how to get gamma anymore, do you think Dr. K would give infusions...
  2. H

    My b12 experience and looking for help and guidance

    BFG, I am having similar symptoms. I've had CFS for 20 years but managed with pacing. All of a sudden much more major fatigue that feels different hit me along with dizziness/vertigo (can't drive on a freeway), choking at night, and other similar symptoms have been going on about 3 months bad...
  3. H

    Cold, crisp and clean ocean air!

    I recently moved to Santa Cruz, smack on the beach. I feel better here than the Sacramento area. I think anyone would do better with the fresh air coming in than polluted air. I still don't know yet how it will effect my CFS, I've still got lots to unpack. I have brought some things from my...
  4. H

    Going upstairs

    I got stuck living in an apartment with a huge outdoor staircase for over 6 months. I never crawled but I was so winded at the top I thought I'd never make it again. Then I had to walk my dog 5 times a day, and at night, so I had to use the stairs a lot. I'll be darned if my muscle strength...
  5. H

    Getting Married-- How to handle a wedding???

    I married when sick but got tons of adrenaline on the day that carried me through. We only had 40 people but I still didn't get to talk to a lot of them. It all went by in a blur because there are so many things to do and I was so high seeing people I hadn't seen for ages. I forgot to eat or...
  6. H

    CLINICAL STUDY on KLONOPIN / benzos for CFS?

    I've found klonopin to be extremely effective at getting rid of my neurological head buzzing, tinnitis, sensitivity to light and sound. I plan to take it the rest of my life unless they find a cure for CFIDS. I've been doing the Cheney doxepin/clonopin combo since I first got sick in 1994...
  7. H

    Silenor (Ultra Low Dose Doxepin) for Insomnia

    I LOVE doxepin and have been taking it for almost 16 years (since I caught CFS). I use the liquid form which is very cheap and a person could do very low doses easily with the liquid. It gives me deep, long lasting sleep and I get antidepressant benefits from it too. I can't take any...
  8. H

    Restricted diets

    I haven't benefitted from the many restrictive diets I've been on. High protein/low carb makes me very constipated...I just can't go without grains and be regular. I've been on juicing diets from a Mexican shaman, raw food, candida, lots of high protein mostly trying for weight loss rather...
  9. H

    My experience with Klimas

    How long does it take to get in to see Klimas...like other cfs docs, over a year? Is the cost of Imunovir high?
  10. H

    Where to Live...Hot or Cool? What's best for CFS?

    Joey, you said you felt fabulous in Santa Cruz, loved that comment. I'd love to meet up but am not there all the time yet, house plans are being done, remodeling. But tell me when you're gonna be there and I'll try coordinating with you to meet up. Do you live nearby? Hollie
  11. H

    Where to Live...Hot or Cool? What's best for CFS?

    I think I'll do Ocean. It's just gotta be better air than inland. I hate the hot days here, I'm going for it. Hollie
  12. H

    Where to Live...Hot or Cool? What's best for CFS?

    Thanks for your reply Moblet. Since this has been our vacation house forever, I've spent a lot of time in both places, but mainly live in Sacramento area. When it gets hot here, I want to leave...hot weather and I don't get along well and the bit of exercising I do has to be done outside...
  13. H

    Where to Live...Hot or Cool? What's best for CFS?

    I haven't thought of sub zero temperatures. Every time I've been in them, I have to put on so many clothes it takes energy to put them on and wear them. I'll have to try temperatures that low again...see how I do. Hollie
  14. H

    Where to Live...Hot or Cool? What's best for CFS?

    Thanks mojoey, I had always thought the air felt and is cleaner in Santa Cruz. I'm glad you felt great there. Hollie
  15. H

    Where to Live...Hot or Cool? What's best for CFS?

    I have the choice of remaining in my home in Sacramento, CA or moving to Santa Cruz, CA, there are big weather differences despite there is only 2.5 hours between them. Sacramento has a lot of nice weather Winter through Spring, a few nights of below freezing. But it gets quite hot in...
  16. H

    cfs/fms doc in Colorado Front Range???

    I agree the co-cure list is out of date. I now have 2 people who need diagnoses, one in Idaho, one in California, sounds like they have CFS for about 6 months. They can't get into the top docs, 1 year wait, I don't know what to tell them. For their disability insurance they need a real...
  17. H

    What about Dr John Chia from California or Dr Sharp in Texas? How about TCM?

    For both Bateman and Peterson there is a one year (at least) wait list to get in to see them. I've been checking today.
  18. H

    Looking at three Docs in Northern California

    I've heard some bad things about Dr. Powell and his clinic in Sacramento. I've heard about abuse of patients and lots of patients unhappy and leaving. Hollie
  19. H

    Is losing hair common?

    When I first got CFS I lost hair, it was in a patch on the top-back of my head. I also lost hair a few years before I got sick with CFS and that, my hairdresser told me, was from stress. These hairdressers are always the ones who see it and apparently they see it often and say it's due to...
  20. H

    Anyone else here sleeping long periods of time, 11 hours+?

    Thanks for the responses. I used to sleep long periods if I way overdid my energy expenditure, but only for short periods. I always chalked that up to my body trying to repair itself from CFS relapse. Now I could just sleep all day every day. In checking with my widow support group I find...
  21. H

    Anyone else here sleeping long periods of time, 11 hours+?

    Lately I've been sleeping over 11 hours a night, it is getting in the way of functioning. My husband died recently and I don't know if this hypersomnia is from grieving and depression from his death or from CFS. I don't call it unrefreshing sleep, but I feel horribly guilty from sleeping so...
  22. H

    The Anxiety thread

    pamb, I think just the first book should be enough, I believe that's what the reviewers on Amazon think too. For this method to work, one has to go through a bit of a process...once you learn that the anxiety is caused by adrenaline circulating in your body and it can only last a short amount...
  23. H

    The Anxiety thread

    My husband, who did not have CFS, had anxiety that kept getting worse. Lexapro, an antidepressant with a benefit of reducing anxiety, totally cured him. I've had anxiey and panic attacks in the past and know that the fear of getting more panic attacks causes anxiety in itself. This keeps...
  24. H

    Toxic Mother

    Interesting Sheba I'm surprised your Mom didn't respond to any of the OCD meds for hoarders. At least you got her to try them. I kind of hope you're wrong and that XMRV doesn't have anything to do with mental disorders like our Mom's. My mother is so very narcissistic, that is why she...
  25. H

    Toxic Mother

    Thanks Mr. Kite, I do know there is something terribly wrong with her from reading and watching the hoarder shows on TV. Unfortunately she will not see a doctor for anything, choosing to rely on supplements rather than believing in doctors. She thinks medical doctors are in a conspiracy to...
  26. H

    Toxic Mother

    Thanks Sheba, it's so rare to find people with CFS who have hoarder mothers...or is it? Maybe it's the cause? I have had many a therapist tell me not to be in contact with her, and that was when I was well and before she was a true hoarder. But it's just so darn sad to see her aging away...
  27. H

    Toxic Mother

    My mother makes me sick. When I attempt to explain my illness to her she tells me she knows more about it than I do, that she knows many people who have gotten well from CFS. She actually knows nothing about OI, POTS, XMRV, pacing or anything. She believes supplements will cure everything...
  28. H

    What to do when you can't do anything?

    Lilly, if bedbound you could meditate. It's good for one's health and mind. It takes patience and is a learning process. There are good audiobooks on Bhuddist meditation by Jack Kornfield. The monks do it for years. I always mean to do it but don't get around to it....I was meditating a...
  29. H

    "Bedtime story" use of MP3 CDs - need advice!

    I think it's the perfect audiobook player since it does all formats and has the sleep timer. I'm downloading from the library right now! I do have some audiobook CDs, in the CD format .cda, and some in mp3. I put them in my computer via CD port, then change (rip) the format to MP3 usually...
  30. H

    "Bedtime story" use of MP3 CDs - need advice!

    I fall asleep to a novel every night, works like a charm. I have a Sansa Clip which is an inexpensive little player of MP3 or WMA files. It is about 2" x 1" and has a clip on the back that you can clip to your clothes if you want. I constantly download from our library and place novels in...