• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. rosie26

    Metabolic Trap//Who got worse on l-tryptophan?

    @Wanja How many milligrams of melatonin were you taking? I started out on 1mg but ended up finding a quarter mg still did the same job. I found it very gentle with no hangover. I now no longer use melatonin though due to another health crisis 6 years ago - and not knowing whether it may have...
  2. rosie26

    What to do next?

    @Wanja Just in regards to the 5-HTP. I'll never take it again. In the first six months of my very severe ME (20 years ago) I tried one tablet of 5-HTP for severe insomnia and I experienced a very frightening reaction. I can't remember how long it took after taking the tablet but it was night...
  3. rosie26

    Thermoregulation and body temperature

    I'm meant to be taking a long break from forum life but just briefly popping in. In my severer years this was a very regular occurrence. Mainly experienced with PEM. The coldness I experienced felt like that deep cold to the bone feeling. I also felt fragile and weak with it. I remember...
  4. rosie26

    Ladies. How common is Vulvodynia in MEcfs ?

    Yes, it's painful. Thanks for the info @GlassHouse . I will ask my GP for the cream and will let you know how it goes.
  5. rosie26

    Ladies. How common is Vulvodynia in MEcfs ?

    Thanks @kangaSue I will keep this in mind
  6. rosie26

    Why Is Music So Hard for People With ME/CFS?

    I've always preferred to listen to talkback radio. Music stirs up too much emotion in me and so I don't have my radio set to a music station playing their choice of music. I do enjoy listening to music but it has to be my choice of music. With ME I cant bear loud music, it's makes me sick very...
  7. rosie26

    Ladies. How common is Vulvodynia in MEcfs ?

    I was given ovestin cream 1mg application once daily. About 2-3 days in it felt like my cervix was going to rupture. There was a full, heavy, achy pressure, really unpleasant. I think this reply was meant for @Sundancer :)
  8. rosie26

    Ladies. How common is Vulvodynia in MEcfs ?

    Same here, oestrogen cream became intolerable after a couple of days, and I also had this before I got ME.
  9. rosie26

    Ladies. How common is Vulvodynia in MEcfs ?

    I have this but it was caused by an infection when I was 20 years old. The infection was cleared but I was never the same again. I later (10 years) went on to get ME and POTS via flu. I personally don't think it would be common, depends on where the infection was, most PwME get sick after some...
  10. rosie26

    PEM yourself to sleep (simple technique to get to sleep when your brain is too wired)

    I personally wouldn't recommend this considering the consequences I experienced with squats. This sort of exercise induces insomnia and the wired and tired for me.
  11. rosie26

    PEM yourself to sleep (simple technique to get to sleep when your brain is too wired)

    @Hip For exercise I prefer a slow walk down the road and back. This I find more gentle and the body is getting some light exercise. I did this even in my severe years and with the help of someone walking next to me. Also, light housework depending on how sick I am.
  12. rosie26

    PEM yourself to sleep (simple technique to get to sleep when your brain is too wired)

    @Hip Squats are one of my worst triggers for PEM which leads to insomnia. It's too intense an exercise for me. I tried to incorporate it into a 5 minute light exercise routine years ago and was very sick with PEM the next day. I find the same thing with gardening, squatting to weed.
  13. rosie26

    PEM induced nasal/sinus infection.

    Thanks for all your replies @Diwi9 @Mary @kelly8 @taniaaust1 @jesse's mom :) I've never tried colloidal silver but have made a note to try it. @taniaaust1 Thanks. I should get the infection tested to see what the appropriate treatment is for it. I don't understand why the specialist didn't...
  14. rosie26

    PEM induced nasal/sinus infection.

    Hi everyone, One of my PEM symptoms is nasal/sinus infection. A few weeks ago I saw an ENT specialist and he confirmed a staph infection. This is the same infection I keep getting in the same spot all the years I have had ME. It sometimes get a very sore throat and intense heat with it. I am...
  15. rosie26

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

    @Shoshana I was curious about this because it sounded for some that it goes on for many hours. I remember when my mother had a colonoscopy a few years ago we both wondered when it was all going to happen, she was drinking lots of fluids and had taken the preps and nothing was happening. I went...
  16. rosie26

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

    @Sushi I need to have a colonoscopy in the next few years and am anxious about taking the prep. I get weakness easily with my ME and I think the prep will be very hard on me. How long does the diarrhea go on for? Is it just for a couple of hours or more than that?
  17. rosie26

    Your experiences with Melatonin

    I never tried melatonin in my severe insomnia years mainly because I was so sensitive and reactive to medication and would get terrible side effects but I did eventually try melatonin years later when my ME improved to moderate. I started out taking 1 mg each night and found that I was able to...
  18. rosie26

    Practical ways of looking nice

    @jesse's mom I wear shorts to mid thigh when I go for a swim. My bikini top has thin shoulder straps and is long enough cover my stomach down to my hips. I don't feel comfortable wearing bikinis or togs because I can't tone up with ME.
  19. rosie26

    Does anyone here have Pulmonary Hypertension by any chance?

    Hi @2Cor.12:9 Interesting, thanks! I've been getting the stuffy nose really bad the last 3 years and it does feel like it makes me hypertensive. I might try the Flonase as well to see if it helps. Let us know how you go with it and all the best with your appointment next week. x Thanks for the...
  20. rosie26

    Pain on the inside of both knees

    @ChrisD Your ME follows similar lines to me. For me it went Chlamydia - Fibromyalgia - Flu- ME. I think unbeknownst to me the reactive arthritis was there from the start. I doubt very much that I would have ME now if I had not contracted Chlamydia when I was 20 years old. That Chlamydia...
  21. rosie26

    Pain on the inside of both knees

    This is really interesting to me. I'd like to spend some time reading it over when not so brainfogged and I will reply you over the long weekend. Thanks for posting @ChrisD
  22. rosie26

    Does anyone else experience a quiet ticking noise when their head pressure is releasing?

    I hear a sound and feel it as well, it sounds more like the bones on my skull are creaking but also feels like fluid in soft tissue moving, expanding, don't know what it's doing. I don't have it all the time but I get it regularly.
  23. rosie26

    Does anyone here have Pulmonary Hypertension by any chance?

    @2Cor.12:9 So pleased to hear your good news. :hug:
  24. rosie26

    Considering flu shot

    I can only recall ever having 1 flu and that one was the one that sent me into full blown severe ME. I know who gave this flu too me as well, he had the aching bones that I had with it. I had never experienced a flu like this. My mild ME onset was more cold-like or some strain of cold virus that...
  25. rosie26

    How was your Onset? Acute infection or Gradually?

    I was gradual with acute time points. The time points were the beginning of each stage. @Banana94 Can you add a gradual and acute option to the poll. I have voted gradual but would prefer to vote for both happening.
  26. rosie26

    Does anyone here have Pulmonary Hypertension by any chance?

    @2Cor.12:9 I thought I may have had PH at the time but I think what I have is a mix of things and I need to get more testing done. If I find out more I will let you know. I'm not familiar with the patient portals but one time a few years ago I asked the lab if they would send me the results of...
  27. rosie26

    Does anyone here have Pulmonary Hypertension by any chance?

    Hi @2Cor.12:9 Thanks for posting and sorry you have this too. I hope they can give you some kind of treatment to help stop any progression. I was the same a couple of years ago but still get some of it. I can't do as much sometimes without breaking out into a hot sweat and overheating. Yes, I...
  28. rosie26

    Upper body and head feel hot and overheated and feel weak and shaky from even low level of exertion

    @knackers323 I know what you mean about the abnormal heat production. It's something I have experienced all the way through my ME. It is abnormal. And unfortunately menopause has made this symptom worse for me the last few years. It feels like a sterilizing heat to me. Since menopause I have...
  29. rosie26

    I feel like a failure

    Big hug back, @eric_gladiator :hug: