• 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. vikkilouise

    Mestonin

  2. vikkilouise

    Mestonin

    My doctor sent me this, Mestonin is mention at 22 minutes
  3. vikkilouise

    Mestonin

    Has anyone taken Mestonin, how did you feel? I started it a while ago but decided to stop was I was in the early stages of a relapse so it was impossible to know whether any symptoms were drug or relapse related. I recently re-started and my arms feel different. I have this weird thing when I...
  4. vikkilouise

    My experience of IV saline in the uk

    Had the best few months I've had so far :)
  5. vikkilouise

    Please consider bone density if severe

    I am the author
  6. vikkilouise

    My experience of IV saline in the uk

    I'm not a fan of theories about exercise helps Me/pots and deconditioning but I do wonder if someone was given saline and as intensive physio as they can manage for a short time if it would work. My dr hopes with time physio and the saline helping me that my body will get stronger and pumping...
  7. vikkilouise

    My experience of IV saline in the uk

    Thanks for your reply, sorry it's taken me so long to reply. I agree with some a huge jump from meds to a central line, it's worked so well for me though, it's a shame there are others it could help but can't access. I know a few people who want to try it after seeing the improvement in me but...
  8. vikkilouise

    My experience of IV saline in the uk

    Sorry it's taken me so long to reply. Lovely to find someone else who fought for it and find the infusions benefit you :) You don't need a general for a PICC, I've got a groshong in my chest (subclavian) and had it done with a local in theatre, you don't even need to always go to theatre for...
  9. vikkilouise

    My experience of IV saline in the uk

    I hadn't, thank you for linking me
  10. vikkilouise

    Please consider bone density if severe

    Posting here as people probably won't look at the bone section until they have a problem. Blogged about trying to prevent osteoporosis in severe M.E, something we are at risk of but gets over looked. Not got the energy to copy/re write here so linking...
  11. vikkilouise

    Burrswood Hospital, Kent (UK) - new statement on in patient services for ME/CFS

    The letter about the whole hospital wing closing (click on image then zoom to read) http://blogfullofhope.blogspot.co.uk/2016/03/letter-about-burrswood-hospital-closing.html
  12. vikkilouise

    Burrswood Hospital, Kent (UK) - new statement on in patient services for ME/CFS

    So the letter arrived today so I no longer have to pretend I don't know Burrswood hospital is closing. It plans for now to do out outpatient but close the hospital wing and no longer do inpatients (which means those of us who have relied on it for years are screwed!)
  13. vikkilouise

    Burrswood hospital closing

    So the letter arrived today so I no longer have to pretend I don't know Burrswood hospital is closing. It plans for now to do out outpatient but close the hospital wing and no longer do inpatients (which means those of us who have relied on it for years are screwed!)
  14. vikkilouise

    My experience of IV saline in the uk

    I will reply more later but I was referred for a picc but actually ended up with a line in my chest (groshong subclavian)
  15. vikkilouise

    Severe consitpation, making ME worse?

    i was wondering if anyone has or had very severe constipation and if it made your ME worse? Mine is constant (can go a month without going to the toilet despite medication) and do wonder if it makes other symptoms worse. I know it was pressing on my organs in the past (showed up as doing so on...
  16. vikkilouise

    My experience of IV saline in the uk

    Hi, I think I first heard of IV saline for ME/POTS on here. It's been a long battle to get it (I'm in the uk) so I've blogged about how I got it and the positive effect it's had. I thought I would share it here in case it helps anyone else in the uk trying to access it...