• 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. Julie87

    neurological issues.

    Hello I have ME/ fibromyalgia since 2009 I have been taking a B12 boost spray for two years for energy but came of recently because I wanted a true reading of my B12 status but my doctor thinks I have mental health issues due to the weird symptoms I have been getting, on the spray my B12 went...
  2. Julie87

    Leg pain

    Hello I am wondering if anyone has intense leg pain, I have been having this for the last few weeks, I am pacing and not doing that much so not sure why this is happening. It's painful enough to make me in tears at night. I am at the docs tomorrow but all she say is go to the ME clinic and I...
  3. Julie87

    Newbie

    Thank you, will check that out.
  4. Julie87

    Newbie

    Thank you, will check that out.
  5. Julie87

    Newbie

    Yes they have but I just think we will be always misrepresented I really hope it changes but I can't see it. It's my husbands family as my daughter understands what I have, I hear that his family have done so much for cancer e.g. Colour run, one sister she is in her sixties did a bungee jump...
  6. Julie87

    Newbie

  7. Julie87

    Newbie

    I really hope I and my husband can see it if it's shown in the uk, we have a big cinema here where I live would be great to see it here. I have been trying to raise awareness to family but they don't believe in what I have so I have given up, I shared posts and did fundraising but the only...
  8. Julie87

    Newbie

    I agree with you, that's the whole point and why I don't think I will bother going anymore as he not helping and I can pace and do activities myself in small amounts. That is a shame about the film as least it prove that ME is neurological to the people who don't think it is. I was thinking...
  9. Julie87

    Newbie

  10. Julie87

    Newbie

    I am on the ME Association and I always see things going on in the south sometimes London, sometimes Bristol, etc, I never see anything in Northumberland, that's why I thought it was a good idea to see if any other people from my area and some how get together and spread more awareness of...
  11. Julie87

    Newbie

    Ahh right I seen the one in your picture. I love museums and art galleries but it's after when home that my legs are painful I ache and my legs feel like led weights and cry with the pain, I can walk short distances but the way things are getting now it's better if I hardly do that as I pay for...
  12. Julie87

    Newbie

    Hello Thank you, yes not good here in Northumberland at all, think Newcastle much better for services, Liverpool right that's really good your GP helps and understands, that's what you need. I didn't even know about the local NHS service for a wheelchair, will ask my doc as have appointment on...
  13. Julie87

    Newbie

    Yes I understand that, it's been going on with since I first got this. I haven't a clue where the nearest film festival is to me and the way I am I can't travel even down the road, I can't afford to buy a wheelchair as they are over £2,000 for a decent one and my husband is not working now and...
  14. Julie87

    Newbie

    I think I just sent you a e mail hope you revived it, sorry was going to reply here to you.
  15. Julie87

    Newbie

    Hello Yes I know about that group but I can't get there as too a long a journey to me to get there. Thank you though.
  16. Julie87

    Newbie

    Hello snowdrop I really hope they do as nothing especially seems to have changed at all not in the years I have lived up here which is 20 yrs and I have had this since 2009. What you said about hearing nothing from Northumberland is exactly what I mean you never do it's like we don't exist and...
  17. Julie87

    Newbie

    Hello snowdrop I really hope they do as nothing especially seems to have changed at all and getting a lot worse especially with my treatment,
  18. Julie87

    Newbie

    Hello snowdrop Sorry I thought Phoenix rising was in the uk My apologies Thank you for welcoming to the group. I have had ME for over nine years, it's got a lot worse and I find where I live no one understands or cares and I get very frustrated and very down to lack of people's knowledge about...
  19. Julie87

    Newbie

    Hello and thank you for your reply The thing is I have done that and haven't ever got a reply, I know there is a lot going on in other cites like London, Belfast etc but not near me so far away, what I mean is trying to get smaller places to do things set up meetings, hand leaflets out etc, I...
  20. Julie87

    Newbie

    Hello Thank you for welcoming me I was wondering If we could spread more information about ME out to towns, villages,etc have leaflets put in shops, GP practices, hospitals etc,organise the people that can get out into groups saying doing something each day if we can not just once a year like...