• 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.

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Search results

  1. E

    Poll: Are you going ahead with a Booster vaccination?

    @Rvanson, I say NO, too. Though I am an atheist. Every year, since 2003 I catch all sorts of flu or suffer from flu- like symptoms until 2011 and absolutely nothing between 2011 - 2017, then severe viral infection turning pneumonia 2017, did not get covid as yet and not vaccinated. Nothing...
  2. E

    Poll: Are you going ahead with a Booster vaccination?

    I know it's announced to stay here many years, -by many organizations. Long term damage is worrying, as worrying as vaccine damage. I feel vaccine damage is going to increase as people are getting vaccinated and this is a burden for immune system, a huge burden for a person with ME. My behavior...
  3. E

    Poll: Are you going ahead with a Booster vaccination?

    Not had any of the vaccines and not intend to get vaccinated as long as I am allowed. I traveled to a very high covid city and back few weeks ago. I go out regularly, shopping, eating out etc. and mix with crowds. Try to wear masks as little as possible. I mean only when I have to. Not caught...
  4. E

    Gluten for punishment

    It took me 10 months to get better after stopping gluten and 3 months later I felt pretty bad again and this time I had to stop dairy too. I'm much better since. This was 4 years ago. Funny that I had eaten gluten a week ago and I'm still suffering from it. I get very very sick with gluten and...
  5. E

    Ptosis/drooping brow.

    Sorry to reply this late @bread yes it went away. Similar droopy eye occurs every now and then when I'm crashed but it looks and feels different from the above experience. It went away gradually within 6 months.
  6. E

    In Memory of Shawn Kregan (SK2018)

    Oh no! This is terrible, so sad to hear. I didn't realize that he was so sick. Another life is gone, a young person who fought it hard, so actively seeking treatment. He traveled the world in his sick state. He provided so much info to this board, he'll be missed massively. I remember him being...
  7. E

    Starting Psychotherapy

    So sorry MartinDH, you are so young. I was few years older than you when I got ME. It was a dark place for a long time for me. I struggled so much, still fight with it today. I was diagnosed 2008, some 3 years late after the initial infection. It took me many years and some ativan to realize...
  8. E

    Starting Psychotherapy

    @MartinDH sorry about asking somehow irrelevant question, what kind of a diet do you have? I'm asking this because my diet effects me so much, recently if I eat foods that I shouldn't, I get so unwell and very depressed, almost suicidal. It is difficult to diagnose multiple food sensitivities...
  9. E

    Have bronchitis -- worth taking antibitiocs?

    Cephalexin, only given 5 day's worth is strange.
  10. E

    Have bronchitis -- worth taking antibitiocs?

    Which antibiotic were you prescribed? Just curious.
  11. E

    Have dysautonomia, need a colonoscopy?--comments and tips

    I took my usual daily allergy medicine (antihistamine tablet) the night before the colonoscopy. I was not given anything for the procedure apart from mild anesthetic and buscopan. This was in IV form before the procedure. My prep was pills as I said it before; the last pills I took were at 2:40...
  12. E

    Have dysautonomia, need a colonoscopy?--comments and tips

    I'm not an expert at all, though I agree with Shoshana. I was told to take all my medicine normally and only stop blood thinners 3 days before. Anyhow, I don't take blood thinners, I took my beta blocker and thyroid medicine in the morning 3 and 4 hours before the procedure. Told to stop...
  13. E

    Ideas for improving or coping with neck pain?

    @Gingergrrl, I use Endoca products, I'm happy with them. I've tried another brand that I can't remember the name. That was good too.
  14. E

    Have dysautonomia, need a colonoscopy?--comments and tips

    This was my prep: 2 measures of (6gr) Magnesie Calcinee Saba mixed with water at 12 am and 6 pm 2 days before the procedure. I was advised to have normal food, no restrictions. (However I can't have normal food anyway and I have restrictions; can't eat dairy and gluten. So I had my usual...
  15. E

    Have dysautonomia, need a colonoscopy?--comments and tips

    My prep was pills this time, I had to take 80 laxative pills, 10 of them in every 20 minutes and I could tolerate them much better than the horrid liquid stuff in my previous colonoscopy. I put the details in another thread I will link it tomorrow, I am so tired right now.
  16. E

    Ideas for improving or coping with neck pain?

    It's not a dumb question at all @Gingergrrl , you can apply CBD oil to the skin (transdermal) and take it orally (drops). There's suppositories for people who can not digest it.
  17. E

    Ideas for improving or coping with neck pain?

    I have herniated discs on my neck, C3 and 4 to be precise. I can't use pain killers due to gastritis. I use CBD oil, highly recommend it.
  18. E

    Cancer treatment. Chemotherapy and surgery.

    I'm very sorry to hear that you're going through this @Fluffytrousers. I am not able to advice about such a serious health issue as I'm don't have medical knowledge. I just wanted to wish that you'll get recover quickly without additional ME issues. I also wish that you get good care from NHS...
  19. E

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @jeff_w thank you so much for sharing your experiences. Your recovery gave us so much hope. It is so wonderful to hear that some of us do recover, I can't even articulate my feelings well, so exciting. Take care and keep getting better and better.
  20. E

    Prednisone makes me feel good

    @starlily88 good luck with the ACTH testing. I have cancelled mine last minute, I just couldn't face the hospital. It was in January and there was a severe flu epidemic. I hate going to hospitals in general, especially hate when there's a flu epidemic. This was my 3rd chance, I've postponed...
  21. E

    Prednisone makes me feel good

    I had a corticosteroid injection (diprospan 1 Ml) in 2015 and 2017 for hernia on my neck. I felt completely back to my normal self with the first injection, best thing was the eczema I suffered for 8 years gone. I mean completely, almost within few hours. And other symptoms similar to yours were...
  22. E

    New Cause Of Autoimmunity Discovered - Age Associated B-Cells

    I went to an internist last Thursday for my flank pain (left side) and GI problems. He examined me and felt that my intestines were very spasmic, rock hard. I thought he was going to do a scan. But he said I need a colonoscopy which I already booked it for next month. I also mentioned all my...
  23. E

    Dizziness / motion sickness

    Maybe, no idea. Never had acupuncture in my life. Don't know anything about it. It'll be good if anyone can explain this that who knows about it.
  24. E

    Dizziness / motion sickness

    I suffer a lot when traveling but not use any medication. I'm usually allergic most meds nowadays. I asked to our local chemist about sea bands/ Chinese wrist bands for travel sickness. She said she's not got them but she uses plasters for her kids travel sickness and it absolutely works...
  25. E

    Dizziness / motion sickness

    I have motion sickness when travel and I also have attacks of dizziness in general. This is going to sound silly, but this is I found helpful when traveling and during the attacks: I completely cover my belly button tightly with plasters ( I mean dressing strip). I use 2 or 3 of them making a...
  26. E

    Desperate for HELP or support for extreme burning generalized skin pain

    So sorry @Starsister that you are in such pain. I don't experience this symptom, just wanted to say I hope the pain eases soon. We all fed up with this illness one way another but what you have now is just so draining. Sorry for not being helpful. Hugs...
  27. E

    Carnivore Diet for ME?

    I had to go gluten free a year ago and dairy free 6 months ago. I am a stone lighter but I had a lot of GI issues last summer. Now I am better absorbing nutrients, my B12 is normal for the first time in years without injections. I eat some carbs, non refined sugars ( small amounts), some green...
  28. E

    Farewell, until we meet again

    Hope to see you in NewPR Trish! Take care.
  29. E

    multi-mineral/multi-vitamin

    I went to chemist couple of weeks / maybe 10 days ago to inquire about good quality B1 and B3 vitamins. I usually buy those from the internet. I wanted to talk to someone who knows about them a bit. I was lucky that the owner chemist was there that day. He insisted all vitamins, regardless...
  30. E

    weather change

    I'm better on sunny days with no humidity and still. Slight breeze is OK too. I'm really terrible with wind and humid. Clouds and cold is not good, makes me even more fatigued. Wind makes me very dizzy.