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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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  1. LaurelW

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Here's a comment from the article in the New York Times. This is what really bothers me about it. "At least it confirms other researchers findings of dysregulated immune system, persistent antigen and dysbiosis. Important researchers such as Dr Maureen Hanson, Dr Dnutmaz, and Dr Ian Lipkin...
  2. LaurelW

    Jen brea. Interesting interview

    I thought she was talking about Omar when she said that.
  3. LaurelW

    NIH meeting follow up: Let’s drop the “CFS” from ME / CFS

    Ramsay's Disease was floated some time back, for the first doctor to describe it, I think. That wouldn't be associated with any symptoms.
  4. LaurelW

    NIH meeting follow up: Let’s drop the “CFS” from ME / CFS

    Amen to that. The term CFS has been the bane of our existence and there is no way to rehabilitate that name. ME at least sounds like a real serious illness.
  5. LaurelW

    Noise cancelling headphones - great for those with a sound sensitivity; horrible for those with a significant other. ;)

    The Bose QuietComfort 45's are a lot cheaper than they were a few months ago. Because Bose just came out with two new headphones, it appears that they are trying to get rid of old inventory. They used to be $429 and now they're $329. I listened to a lot of reviews of all three headphones. It...
  6. LaurelW

    CPAP/APAP machine helped any cfsers??

    I had a sleep study and saw a sleep doctor and sleep therapist in the last few months. It's pretty frustrating that they don't seem to know much about ME/CFS. I also had the sleep doctor tell me that losing weight doesn't help, and her very own nurse told me that it does help. They wanted me...
  7. LaurelW

    The Atlantic: Fatigue Can Shatter a Person by Ed Yong

    Well written and shines a light on a lot of things about this illness that are difficult to articulate, especially with a partially-functional brain. Thanks for posting.
  8. LaurelW

    Have you ever used the Curable app for Fibro pain?

    I was wondering if anyone here has experience with the Curable app for chronic pain. My sleep therapist recommended it, along with several podcasts that describe this new bio-psycho-social theory of pain. Many of the recovery stories deal with recovering from trauma and emotional stuff. I've...
  9. LaurelW

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    This is good news, Cort! And many thanks to the previous board.
  10. LaurelW

    Alternatives to Fosamax?

    I thought long and hard about taking one of the bisphosphonates because I had osteoporosis, and I can't exercise due to PEM. (I had been on bio-identical hormones for a few years, but went off of them because I started minor bleeding again at age 65). Coincidentally, when I was discussing this...
  11. LaurelW

    Trazodone works great, but beware of withdrawal

    I am going through something similar. I had forgotten that I read these posts a while ago and had to go off the trazodone for a tilt table test. I stepped down over 5 days, but it wasn't near enough. I've been have extreme sleepy spells in the afternoon, hot and cold spells, a little bit...
  12. LaurelW

    OSTEOPOROSIS AND DRUG CHANGES

    I got osteoporosis around age 60 after having ME for 20 years and a less-than-active lifestyle. I tried Fosamax, but it gave me horrendous heartburn. When my osteoporosis kept getting worse, I considered taking Reclast and read a lot about it, but the possibility of having worse fibro pain for...
  13. LaurelW

    An Update on the Mestinon Clinical Trial

    Actually, Rebecca, my doctor is the one who told me to cut it in half. He says that what you said is usually the case, but for some reason, it works fine with the pyridostigmine ER.
  14. LaurelW

    An Update on the Mestinon Clinical Trial

    I've been using it for a few months. I was taking two or three doses a day, and found that there was a magic number where it worked and didn't cause side effects. Any time I would go above that dose I had queasiness, nausea and dizziness. When I went back to a lower dose, it took awhile for...
  15. LaurelW

    New documentary about Dr. Bateman

    That's what I understand, Rufous. I've been a patient of Dr. Bateman's for 25 years. She's an extraordinary doctor and has done so much to advance the field, including doing many, many clinical trials and lots of doctor and patient education. She's a truly knowledgeable and caring physician...
  16. LaurelW

    Post-sex exhaustion

    I still get PEM the same amount if I let my husband do all the work. It's just a trade-off I have to live with and it helps to plan it during a time when I don't have much going on for a few days afterwards since I know I'll be wiped out.
  17. LaurelW

    Where to order Imunovir Now???

    I get my Imunovir from Canada Pharmacy Online. (You have to fax them a prescription, which my doctor supplies).
  18. LaurelW

    ME/CFS symptoms over time

    My ME/CFS doctor told me that 50% of us will also develop fibromyalgia over time. I've been sick for 25 years and started getting fibro symptoms about ten years ago after a bad crash.
  19. LaurelW

    Flu while having CFS

    I got the flu about four years ago after not having it for more than 20 years. It lasted an entire month, so now I get the flu shot every year, in spite of the fact that it throws me back for about a week. By that, I mean increased fatigue and achiness. But it's better than being sick for a...
  20. LaurelW

    A Town for People with Chronic-Fatigue Syndrome | The New Yorker

    You are correct. I was on their compassionate care program, which meant I got the drug for free (there were very few slots). I got kicked off in January 2016 because they discontinued that program, and I couldn't afford the thousands of dollars to pay for the drug. So now only the people with...
  21. LaurelW

    A Town for People with Chronic-Fatigue Syndrome | The New Yorker

    I was on Ampligen for a total of 7 years (two different times) and it helped me so much! I've been off for 2.5 years now and haven't crashed yet (I'm one of the lucky ones that maintains the gains), but I sure wish it was available just in case (I already had a severe crash once). I testified...
  22. LaurelW

    Need help - root canal or extraction

    I would get a root canal and try to save the tooth if possible. Extractions bring a whole host of other problems. I have lots of root canals due to poor dental care when young, and they are fine.
  23. LaurelW

    Has anyone had the new shingles (Shingrix) vaccine?

    I've been getting the flu vaccine the last four years after I had a bad case of the flu that lasted a whole month. Usually I'm extra tired and achy for about for days after I get the shot.
  24. LaurelW

    Gabapentin

    I've been taking gabapentin for years for fibro pain. It's the only thing that works with a minimum of side effects. It made me quite dopey at first, but that lessens over time. I take 100 mg. twice during the day, 300 mg. at bedtime and another 100 mg. in the middle of the night. Since I...
  25. LaurelW

    CFS and applying to university- do i mention it?

    Universities have disability resource centers whose job it is to make accommodations for disabled students. I used their services when getting my degree and it really, really helped. I was able to sit exams at a quiet location and had more time to finish them. Also, my husband is a university...
  26. LaurelW

    Blood test after Inosine Pranobex

    I'm on this (Imunovir) but a slightly different regimen. I stay on the double dose for five days, the weekend off, then the single dose for five days and keep alternating. So far, I think it has kept me from relapsing.
  27. LaurelW

    Has anyone had the new shingles (Shingrix) vaccine?

    I saw my GP yesterday, and she said that I'm at the age where I should be getting the shingles vaccine. (I'm almost 65). She said the new vaccine (Shingrix) works better and is better tolerated than the old Zostamax. She had heard rumors, though, that it can exacerbate ME/CFS. I'd like to...
  28. LaurelW

    Shingrix adjuvant QS-21

    My doctor recommended I get the Shingrix vaccine as well, so I'm wondering if anyone here has had the vaccine and how they tolerated it. I had chicken pox as a child, so am apparently at risk for shingles.
  29. LaurelW

    Trauma-induced Gastritis

    I have chronic gastritis which started in November from some kind of stomach bug. I was on PPI's, now I'm on H2 blockers, but I'm frustrated by the slow rate of improvement. I was diagnosed with osteoporosis recently and am worried that now I'm not absorbing the calcium/magnesium I'm taking...
  30. LaurelW

    How can I get Imunovir in the United States?

    I get Imunovir from Canada Pharmacy Online, with a prescription from my ME doctor. I've been on it for a year, and it seems to be helping me.