• 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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Search results

  1. sharks

    Fluish symptoms come and go

    Mcas The most simlple way to put it. Youre having a mild allergic reaction to everything. https://en.m.wikipedia.org/wiki/Mast_cell_activation_syndrome
  2. sharks

    Fluish symptoms come and go

    Hey thanks for reaching out. I found out i have MCAS and am treating it.
  3. sharks

    Gabapentin taper

    Coming off a narcotic is worse than coming down off gaba. GABA is also easier to get from a dr.
  4. sharks

    Gabapentin taper

    If you have the option to take GP do it, it’s much better than taking LDN and kolonopin. GP has waaaay less side effects than those medications. GP withdraws are annoying, but it’s better than a painkiller, benzo withdrawal.
  5. sharks

    Gabapentin taper

    I took 100 mg for a month and stopped cold turkey and had annoying withdrawal Symptoms. I’m trying to withdrawal again after taking it for a month but doing a taper. It’s not fun, but it could be worse.
  6. sharks

    Heart rates spikes while sleeping

    Have you had a sleep test? It may be sleep apnea.
  7. sharks

    Is it possible to get your life back? Has anyone here done it?

    Colloidal silver is bogus. It’s the only product in my whole foods with a warning sign. https://nccih.nih.gov/health/silver
  8. sharks

    Is it possible to get your life back? Has anyone here done it?

    Lol best doctors. I saw a rhumatologist who noticed the Lyme and EBV and I finally said screw suppliments because nothing was working and asked my dr for sleeping pills. I am also getting acupuncture. I'm slowly getting better.
  9. sharks

    CBD, cannabinoids and ME/CFS

    Ooh nice. I'm in NYC and its decriminalized here but there are no good shops that sell good stuff.
  10. sharks

    CBD, cannabinoids and ME/CFS

    I'm looking into doing THC pills for sleep. THC has helped over prescription sleeping pills
  11. sharks

    Is it possible to get your life back? Has anyone here done it?

    Yes it is possible. Tackle the disease whatever it may be with antibiotics and/or antivirals (which ever applies to you). Keep the inflammation down with diet or medication. Get sleep to heal. Wash, rinse and repeat. I've been battling this for a year now. And I'm getting better. Sleep improved...
  12. sharks

    Gabapentin and Famvir

    Has anyone taken this combination? I'm hoping this will help me sleep and I can kick this virus!
  13. sharks

    positive ANA

    He thinks it fluctuates on its own. I do notice a difference. I couldn't tell you what worked.
  14. sharks

    positive ANA

    Mine was 1:160 speckled in March. After prednisone, 2 weeks of doxy and famvir it went down to 1:80 in May. Everything is normal but the Ana test.
  15. sharks

    Long term Valtrex users curious

    I think it depends on how bad you have it. I had CFS for close to 10 years and I took that. Did some light exercise when I could, did vitamins and took whatever I could to sleep. Which is the key sleep will help you heal while on medication. I have been off for two weeks and my dr has put me...
  16. sharks

    Long term Valtrex users curious

    I've been on both valtrex and famvir long term dealing with 2 different strans of the herpes virus. I was on valtrex for 3 months which I believe was better for HSV1/2 for me. Famvir for 4 months was better for CMV and EBV. For valtrex the only side effect I had was that I was dizzy and I...
  17. sharks

    Hormones and insomnia

    I'm going to give that a try and do magnesium before bed. I have 250 mg chewable tabs. I might take 2 a day instead of one. And one before bed. I also drink nunn which is a less sugar alternative to gatoraid. Which I got at Whole Foods. That has magnesium in it as well.
  18. sharks

    Hormones and insomnia

    I'm 32. I've had all my hormones checked and my dr didn't see anything wrong.
  19. sharks

    Hormones and insomnia

    I think that my insomnia is hormone related. I have a hard time sleeping. When I get my period I get great long sleep. Then it gets worse continuing through the cycle. I've tried melatonin, lexapro, benedryl, 5-htp, ashgawanda, kava. With no help. My mind gets tired but I am still awake. I...
  20. sharks

    Can only sleep at 7 am

    I was trying benedryl for a while and that's touch and go. I also tried 5-htp. That makes my mind tired, but not my body. I also started eating every two hours during the day. I've heard that can help maintain blood sugar and help with cortisol spikes. My heart rate has gone down. I still have...
  21. sharks

    Ladies, do you feel worse before your period?

    Now I'm getting panic attacks. Does anyone take anything natural for the panic attacks?
  22. sharks

    Does anyone on here sleep normally?

    I started getting deep sleep (with the help of benedryl). The pink puffyness in my eyes goes down every morning. I wonder how long I have to sleep with taking something before my body's normal functions start kicking in.
  23. sharks

    Ladies, do you feel worse before your period?

    Have you tried anything else? I can't do hormonal BC. My drs have banned me because of the migraines.
  24. sharks

    Ladies, do you feel worse before your period?

    I am about to get my period and I feel horrible. When I get my period I sleep great and think I'm getting better. Then when ovulation comes up, until my period. I can't sleep. Have high blood pressure. Constantly feel like fight or flight. Have hand tremors. Is there any reason for this...
  25. sharks

    A basic explanation of methylation?

    Thank you! This is what I am looking for.
  26. sharks

    A basic explanation of methylation?

    What makes this person qualified? How do we know this information is valid? When I google "Methylation" I get Methylation as related to DNA. Any information of Methylation as related to health or CFS comes from websites anyone can make. My concern is that anyone that can make a website and be...
  27. sharks

    A basic explanation of methylation?

    Thank you for the explination. How does this relate to CFS/ME? I am not going to the site you supplied. Anyone can make a website and put whatever on it to sell books and suppliments and what not. That is the problem I am having finding any good information.
  28. sharks

    A basic explanation of methylation?

    What is the source of this? It looks poorly photoshopped.
  29. sharks

    A basic explanation of methylation?

    methylation? What exactly is it? Everyone talks about it in the fourms as if I am suppose to know what it means. Also when I do read something about methylation, I am linked to a unofficial blog with goblity-gook. No back up with scientific facts what so ever. I almost don't believe that...
  30. sharks

    Mysterious Undiagnosed Illness-seeking advice, suggestions and stories!

    In the US I had to fight, lie, push and annoy to get doctors to test what I needed. I'm finding a lot of brits on this fourm do not push doctors to get the tests you need. I hate to be bad news but you may have to go private to get the help you need. Do not take no for an answer.