• 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. H

    Why Is Music So Hard for People With ME/CFS?

    I listen to music all day long too. And I am also grateful. Like you I listen to classical music and I have become extremely sensitive to anything out of tune. I only enjoy classical music without too much vibrato which grates on my nerves and sounds out of tune. Fortunately there are many new...
  2. H

    Why Is Music So Hard for People With ME/CFS?

  3. H

    More saliva, dry mouth

    It is not unusual to develop Sjogren's if you have another autoimmune disease.
  4. H

    digestive enzymes, specifically animal source /pancreatin etc etc

    The only thing I noticed was that I don't get diarrhea and cramps after eating yogurt. I don't think it helped other symptoms. I take Now brand that I get on Amazon.
  5. H

    digestive enzymes, specifically animal source /pancreatin etc etc

    I take pancreatin and it helped with my digestive issues. I can now tolerate yogurt but not a glass of milk.
  6. H

    How have others organised their support services?

    I have 2 helpers. Once a week my housecleaner cleans my house and does a week's laundry and puts it away. Three afternoons a week I have a shopper/cook who prepares meals for 2-3 days and cleans the kitchen. Either of them will do other small chores if I need them. I have a Mac computer so I...
  7. H

    IVIG and Working

    I've been on SCIG for about 6 months. I don't think IGG has helped my ME/CFS but I haven't gotten sick in a long time. When I first took IVIG one dose a couple of years after I got CFS, I went into remission for a number of years. I had hopes for this time, but alas.... (It took over 20 years...
  8. H

    IVIG and Working

    I took IVIG for a couple of years, but then it was getting hard to find a vein. I switched to subcutaneous gamma globulin and it's much easier. I can give myself the shots at home. I was really phobic about shots but these are really small needles and you put them in your stomach or some fatty...
  9. H

    How does MECFS get worse long term?

    I've been wondering that myself. My symptoms have gotten worse over 34 years.Now I spend most of my time in bed but I'm mobile. I'm hoping it doesn't get worse. I feel better now that I don't allow myself to overdo and make a point of resting. I haven't seen research on this though. Only...
  10. H

    Why do patients with ME have issues with "psychological factors"??

    I'm a psychologist. I consider it unethical and dangerous to discount a physical illness and treat it as a mental health problem. I have ME/CFS and I get really pissed when people ask if I'm treating my "depression". I'm not depressed; I'm sick. I have patients with cancer. I don't analyze their...
  11. H

    Cannabis & stomach problems?

    I've found cannabis very helpful. It eases the pain from my osteoarthritis and makes my evenings very enjoyable. I watch some tv and listen to music. I have noticed that I have a certain amount of gas and bloating with it. I take it in a chocolate bar.
  12. H

    Light on ME/CFS III: A Different Herpes Virus for CFS? - Varicella-Zoster, Shingles and ME/CFS

    This makes sense. I hope there is more research and new meds to treat it.
  13. H

    Optic Neuropathy and CFS correlation?

    You might want to get tested for Sjogren's. I have it and ME/CFS. It causes dry eyes and mouth. I take Restasis and Plaquinil to control some of the symptoms of SS.
  14. H

    Heart Disease and POTS/CFS

    Thanks. I learned a lot from your reply. I'll see my cardio in a few days and ask him about it. I normally have low blood pressure, but I've never taken it standing up. I'll have to do that.
  15. H

    Heart Disease and POTS/CFS

    I'll experiment more with it and more resting after the shower. Thanks for you suggestions and encouragement.
  16. H

    Heart Disease and POTS/CFS

    I just tried it and it did help. My pulse stayed under 100 until I got out and dried myself off (sitting down) and it went up to 120. An improvement. I hope it continues.
  17. H

    One month of CBD Oil and immune shift?

    I'm glad to hear of its immunosuppressive qualities. I started taking it a few months ago for arthritis pain and found that it made me feel much better. I only take it at night after dinner, but it's the only part of the day that I feel good. It has also helped with sleep. I eat a section of a...
  18. H

    Physio - what to ask for?

    I'm seeing an osteopath and it's made a lot of difference. I was having problems with my knees and back but he very gently stretched the muscles (it hardly felt like he was doing anything). Next time he is going to work on my neck/head pain. Not all of them are great, but mine is. I'm lucky.
  19. H

    Heart Disease and POTS/CFS

    I hope the shower chair works. I always start my day with a shower. I'd hate to have to give that up.
  20. H

    Heart Disease and POTS/CFS

    I'll try a shower chair, though I think that lifting my arms to wash my hair might trigger it. I can't wait to talk to my cardiologist next week.
  21. H

    Heart Disease and POTS/CFS

    I've worried about that too since my bpm goes from 50 to 220 when I take a shower. That can't be good for my heart. I'm seeing a cardiologist in a couple of weeks so I can ask him.
  22. H

    Advice on heart rate monitor - HR, sleep cycle data, possibly HRV

    My Apple Watch does that. It sends alerts if my bpm goes over 100 or under 40 and it kind of tracks my sleep.
  23. H

    Am I the only one?

    I have those symptoms and they get worse at night. I think it is common. The swollen salivary glands are common with Sjogren's. I have both. Whoopie. I take excedrin or tramadol for the headache/neckache if it's bad.
  24. H

    CIC's (circulating immune complexes): creation and pancreatic enzymes

    That's the one. I take it for digestion and it helps.
  25. H

    Could it be inflammation?

    I have this too. I can't read at night and my left eyelid keeps drooping.
  26. H

    Brain Damage?

    That's reassuring. My brain is my favorite organ.
  27. H

    Which doc? Kaufman/ Chheda or Montoya?

    Thanks for this informative post. I am now totally convinced that I should see Dr. K. I have an appointment for Sept and I am really hoping that he can help. I am becoming steadily more disabled though now I am really trying to cut back on any exertion. I just invited some friends to come over...
  28. H

    Brain Damage?

    I am sure I have OI even without the tilt test. I can't stand or sit for more than a few minutes without getting very uncomfortable and my pulse goes crazy when I take a shower. It went up to 220 and my normal bpm is 56. Reading about it here was a Eureka experience. Now I check my bpm and try...
  29. H

    Brain Damage?

    I have all the same cognitive problems and my head feels like it's under pressure. The question is, will it ever go away?
  30. H

    Which doc? Kaufman/ Chheda or Montoya?

    I made an appointment with Dr Kaufman. It won't be until September, but I hope he can do something that helps. Right now I am basically bedridden though I can get up to eat and shower.