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    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. BlahBlahBlah

    Desperate need of help

    How are you doing now? Who are you under? Have you had eds ruled out as everyone I know with your issues on tpn also have eds. I don’t know if your in the uk but they can test to see if your colon has stopped working, some people change to an ilostomy when their colon completely fails and...
  2. BlahBlahBlah

    Has anyone looked at baroreceptors role in M.E?

    I have blood tests every few months to check ectrolytes and make sure my kidneys are handling the extra salt, so far so good :)
  3. BlahBlahBlah

    Has anyone looked at baroreceptors role in M.E?

    Seeing you mention potassium reminded me I asked to try either ringers lactate or Hartman’s. I did a months this trial of a litre of ringers lactate which is closer to your blood chemistry (my dr was saying he used to give it a lot to patients in emergencies while waiting for blood to arrive). I...
  4. BlahBlahBlah

    looking for computer recommendations

    It was really expensive but I have the tiny MacBook which is the first laptop ever made without a fan. It’s completely silent and lighter than my old iPad Air! There’s been more MacBooks out since which are more fancy but have fans in so even if I was offered a free swap I would stick with mine...
  5. BlahBlahBlah

    Has anyone looked at baroreceptors role in M.E?

    I’ve never drunk 9grams of salt per litre. I have 1l of saline IV over 4 hours every 24 hours. We tried running a litre of saline in subcut every 24 hours (so exactly the same amount of saline every day as normal) and I went downhill, back to struggling to sit up or transfer and other symptoms...
  6. BlahBlahBlah

    Has anyone looked at baroreceptors role in M.E?

    I actually get annoyed with the people (not you) who say drink more. I was drinking over 6 litres a day (and another litre over night)on salt tablets and still dehydrated. I ended up in a&e last week and had a nurse who had a pots patient who totally understood it. If IV fluids didn’t have any...
  7. BlahBlahBlah

    Has anyone looked at baroreceptors role in M.E?

    They pumped me with saline and left it as it’s having good results for now (and for the past 3.5years)
  8. BlahBlahBlah

    Has anyone looked at baroreceptors role in M.E?

    I don’t have addisons and never had blood volume measured, just assumed it would be low. I’ve been diagnosed with pcos based on hormone results and hashimotosis but that was a long way into my M.E
  9. BlahBlahBlah

    Has anyone looked at baroreceptors role in M.E?

    Sorry, I did mean the sudden increase in blood volume (due to the saline) puts the stretch on the blood vessels and the receptors. We tried subcut fluids which didn’t make any difference and tried running iv fluids over long periods and that didn’t help much. 1litre over 4 hours seems to work...
  10. BlahBlahBlah

    Saline therapy

    My doctor thinks it’s not to do with just increasing blood volume but the sudden stretch on the baroreceptors by the sudden increase in blood volume that does it, not the actual blood volume itself. It makes a lot of sense when I read what the singnals sent from the baroreceptors send when I...
  11. BlahBlahBlah

    Saline therapy

    I have a central line. I left the house on average once a year, I now go on holidays (but only to the same couple of places which involve not long times in cars), can spend so much more time sitting in my wheelchair, more alert and feel so much better. I have 3 holidays planned in the next 4...
  12. BlahBlahBlah

    My experience of IV saline in the uk

    Forgot to say my saline, supplies and nursing support (which I only use over the phone as my parents and I manage) is now all provided by the NHs
  13. BlahBlahBlah

    My experience of IV saline in the uk

    Found my old thread. 3.5 years on its been a life changer still. I’m still gaining strength. I still live life in bed on the whole but armed with massive doses of morphine and onsdenstron I can push myself and have amazing experiences, in the summer I spent a week visiting longlete Safari park...
  14. BlahBlahBlah

    Saline therapy

    Sorry old thread but was just searching saline. I’ve been on it daily for 3.5years, best thibgthats ever happened to me and has helped me so much. If I don’t have it within 2 days I’m really bad again
  15. BlahBlahBlah

    Has anyone looked at baroreceptors role in M.E?

    ive been on daily IV saline for 3.5 years now and it helps far more than just boosting my BP to help me sit up. My doctors theory is the sudden stretch on the baroreceptors changes the signals they sent. Reading about their role in the body makes a lot of sense but I never see it mentioned in...
  16. BlahBlahBlah

    Is it hard to convince docs to give IV saline?

    To throw in an extra thing I had a month of IV ringers lactate which has electrolytes. I still felt better than no IV but switched back to saline
  17. BlahBlahBlah

    Is it hard to convince docs to give IV saline?

    Tad insensitive comparison considering some of us (me included) have never had a drink in a pub or could never drink a pint! Luckily my 2 specialists understand and have started to give me life outside of been vedbound all my adult life
  18. BlahBlahBlah

    Is it hard to convince docs to give IV saline?

    I'm under 2 ME specialists, they would disagree with you there
  19. BlahBlahBlah

    Is it hard to convince docs to give IV saline?

    I used to do the try drinking a pint of cold water to push up BP thing but didn't find it worked. Could drink 6litres plus, was put on slow sodium but still felt constantly dehydrated and with salt cravings
  20. BlahBlahBlah

    Is it hard to convince docs to give IV saline?

    No it's given over 2 hours although I sometimes run the first few hundred mls in on full and then slow it down
  21. BlahBlahBlah

    Is it hard to convince docs to give IV saline?

    Second blog http://blogfullofhope.blogspot.co.uk/2017/04/iv-saline-2-years-on.html
  22. BlahBlahBlah

    My experience of IV saline in the uk

    I've lost my log in for when I posted this original thread but I've now done a blog post about coming up 2 years on saline http://blogfullofhope.blogspot.co.uk/2017/04/iv-saline-2-years-on.html
  23. BlahBlahBlah

    IV saline 2 years on

    Thanks :) there's more info on my original blog post http://blogfullofhope.blogspot.co.uk/2016/02/iv-saline-for-pots-and-severe-me.html I run 1L every single day, I find I start feeling better after about 500mls but the last half bag does carry on making a difference. I would still opt for...
  24. BlahBlahBlah

    IV saline 2 years on

    There's no set amount but the max I run is 2L a day, my dr prefers me to have under 1.5 a day
  25. BlahBlahBlah

    IV saline 2 years on

    People have been asking how I'm getting on with IV Saline for severe Me/POTS so I've blogged an update about it http://blogfullofhope.blogspot.co.uk/2017/04/iv-saline-2-years-on.html #pots #me #cfs #mecfs #ivesaline
  26. BlahBlahBlah

    My experience of IV saline in the uk

    I thought entenox was really bad if used too often in people with eds?
  27. BlahBlahBlah

    Is it hard to convince docs to give IV saline?

    http://blogfullofhope.blogspot.fr/2016/02/iv-saline-for-pots-and-severe-me.html?m=1 My first blog about it, I'm in the process of writing a second updated one
  28. BlahBlahBlah

    Is it hard to convince docs to give IV saline?

    Hello, I've been on daily IV saline for nearly 18 months and no one can believe the difference in me. I have to disagree with the cortisol theory as I have it through a central line. Having it daily and accessing my line is utterly routine and def not enough to cause a cortisol spike. My Dr...
  29. BlahBlahBlah

    My experience of IV saline in the uk

    Hi Dr Bansal, prescribes mine in the uk
  30. BlahBlahBlah

    Comment by 'BlahBlahBlah' in 'EXPERIENCE OF STAYING AT BURRSWOOD HOSPITAL, KENT'

    AVOID AVOID AVOID was a regular patient but discharged myself AMA after an awful couple of weeks. They are getting rid of dr Paul from the end of August too