• 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. M

    Will You Be Getting the Covid Vaccine?

    I am not anti vaccines at all but there is no way I am having this. I do not trust it has been tested properly- effectively it is a stage 4 trial with emergency authorization. In the UK we are being encouraged to agree and to comply as if it is our community duty- all very frightening, and as a...
  2. M

    Coronavirus Vaccine(s)

    I am really hoping that a well respected Immunologist such as Nancy Klimas is going to advise us what do to in relation to vaccination. In the UK it is becoming a pressure that appears to be building to comply- no question. For example last night during questions at a press conference "Will...
  3. M

    Coronavirus Vaccine(s)

    I am very concerned about the vaccine myself. I have had ME for 25 years following an enteroviral infection that caused autonomic dysfunction pericarditis muscle problems and a host of neurological symptoms. I know the pressure to have it is going to be enormous here in the UK and I am not...
  4. M

    Mornings- Does Anyone Have The Answer with OI?

    Thank you so much Revel this has helped me more than words can say. I am having a late menopause and I think this is also affecting my pots as well in the way you describe. I am 59 but my last period was only a year ago and I can trace the deterioration in my POTS and OI to the start of the...
  5. M

    Mornings- Does Anyone Have The Answer with OI?

    Thank you so much Revel I will try that. How are you if you don't take it compared to if you do? Do you wake up with a headache everyday or are you dizzy when you stand up?
  6. M

    Mornings- Does Anyone Have The Answer with OI?

    Mornings are absolutely dreadful. I have OI and getting out of bed is a challenge that I have so far managed to do for most of the 24 years I have had this disease. I am thinking it is mostly due to overnight dehydration, so try to ensure I drink some fluids before bed, but still I wake up with...
  7. M

    Sight Test - Visual Field Anyone Find This Hard?

    I wear lenses and glasses so every year I have to attend sight tests and lens after care appointments. Part of the pre-screening includes a visual field test now that until this time was unknown to me. In case you haven't had it it involves looking into a screen concentrating on a red dot and...
  8. M

    Cloudy Urine In Crashes

    Yes CBS I really see where you are coming from and can identify with what you have experienced exactly. I know Nancy Klimas has said we are a litre short on blood volume so maybe as this falls too low the kidneys struggle to filter the urine. I think the brain may also be too tired to control...
  9. M

    Cloudy Urine In Crashes

    Yes I agree calcium is important with regard to kidney stones. I have a family history of kidney stones but have been very lucky to only have one bad bout of them in my twenties almost 30 years ago. This cloudy urine is a finding that is associated with ME crashes as it occurs when other...
  10. M

    Cloudy Urine In Crashes

    I have noticed that when my other symptoms are flaring I have cloudy urine. It seems to be related to dehydration as as I go downhill I need to drink more to boost blood volume. A few drinks of water and it goes clear again. I am not diabetic but I have had kidney stones in the past. Anyone else...
  11. M

    Worse OI After Flu

    I have just had flu on top of ME for the first time in 20 years. High fever, aches and pains congestion and sore throat lasted 2 weeks- some time bed bound completely. Now improving but the OI is so much worse- this morning BP was 99/64 lying pulse 71, but after standing for a few minutes and...
  12. M

    How Do You Feel In The Morning?

    I'm having a lot of trouble getting up these days- it's like I am so drained of energy, like lifting my head off the pillow is an effort. As well as this my sleep is crazy. I go to bed and crash out like I have been unconscious, but then wake up suddenly in the early hours, and then toss and...
  13. M

    Anyone Like Me In The Morning?

    Thank you all so much who have replied so far. I hope you are doing ok Justy- the herbalist sounds good. SOC this is exactly the situation and this is what I have found helps too, so I am convinced that low blood volume is the issue. I crash after long haul flights - dehydration I am sure, but...
  14. M

    Anyone Like Me In The Morning?

    Does anyone experience this?- I wake up drenched in sweat and feel butterflies in my stomach. I try to calm down but nothing works and sometimes I will have to use the bathroom with urgency with the bowels affected rather like you might before a dental appointment you were dreading. This...
  15. M

    Warning Signs: When to STOP

    Mine is always the same. 1. I crave fluids and carbohydrates. I don't eat carbs in response to this any more as gives me artificial energy. 2. If I take my blood sugar it will be low- 3 or 4 in the UK which I believe is 54-72 in The US. 3. My digestion starts to fail and IBS sets in 4...
  16. M

    What Do You All Do About The Dentist?

    I have my yearly check up at the dentist this week, which I am not looking forward to as I am not in a good patch and my BP is low and I am generally wiped out. The trouble is that teeth need care too, and these sort of visits are so draining, and of course if you need treatment it presents even...
  17. M

    Does anyone else feel revolting after a shower?

    I am unable to have a shower at all due to low blood pressure and more especially low pulse pressure. I have found baths to be easier, and on the rare occasions I have had showers I am so ill during and after them, but in hotels if I get the disabled room there is usually a shower stool and this...
  18. M

    B12 Has It Helped?

    Watching an excellent video presentation online by Dr Bell recently he mentioned that b12 has helped his patients by up to 30% so I decided to try it. I purchased some from Prohealth and the difference has been incredible. My energy levels are improved and my sleep has really changed and I am...
  19. M

    How Low Does Your Blood Pressure Go?

    Yes Valentijn- I have the narrow pulse pressure you describe when I stand up too, and also have the inability to tell how low as the machine can't register it either.
  20. M

    How Low Does Your Blood Pressure Go?

    Tes TinyT this describes me completely. A bad day starts with lower pressures and I can raise my BP as you do with fluids and salt during the day.This low BP causes headaches and lots of other symptoms and is at the heart of what makes me feel so ill. I agree too that it also fluctuates...
  21. M

    How Low Does Your Blood Pressure Go?

    Having low blood pressure is something I have got used to since getting CFS 15 years ago. The mornings are the worst -80/63 this morning and I also have NMH which causes even lower readings when I stand. I do all the usual things to bring it up like salt and fluids but just wonder how many...
  22. M

    Professor Mathias + M.E.

    I am really interested in this thread so wonder how you will get on Keenly. I have considered seeing him myself but wonder how he views ME/CFS. Perhaps you could let us all know?
  23. M

    Symptoms Crash

    Thank you so much Justy and Sleepy for your lovely comments. It is so interesting what you say justy about the panic attacks, night sweats and waking all through the night. This always seems to be the way I go when I am in a relapse. I never had panic attacks until I got ME, and had no idea...
  24. M

    Symptoms Crash

    I was doing ok until my husband had to work away from home, so I picked up all the house jobs and pet care during the week. Added to this my father has cancer and is very sick. I was ok for three weeks, and then I started noticing that I was doing more silly things with the brain fog, like...
  25. M

    Palpitations

    I've had heart palpitations now for fifteen years on and off and all my tests have been normal, although I do have POTS and NMH with CFS. I get them mostly at night when I try to sleep, and they often feel like forceful beats and sometimes skipped beats. They are very scary- does anyone else...
  26. M

    Headaches!

    I have suffered with headaches since getting ill in 1996. Several migraines too included in there. I think the headaches in my case are due to orthostatic hypotension and lack of blood flow to the brain, as they also lead onto coat hanger pain across the back and shoulders - especially in the...
  27. M

    Hypoglycemia again

    Hi River, I am battling this too and am in the early days of giving up sugar. I am eating small meals and increasing protein, but am still having the hypo attacks especially at night. I know that in the UK outbreak in The Royal Free Hospital, so closely monitored by the late Dr Melvin Ramsey...
  28. M

    Panic Attack On Waking

    Hi Marg Are you saying that your ME/CFS came back after a remission of 8 years and that panic attacks were the first symptom you noticed? I find this very interesting because I too had a gap of almost 8 years when I was in relative good health, and then crash. I associate this adrenaline...
  29. M

    Living 5 minutes by 5 minutes

    So sorry you have been this ill but you are doing exactly the right thing. Have you seen the pacing video on Vimeo made by an English health board as it is a fantastic guide to the pacing concepts? It is called Setting The Pace http://www.vimeo.com/6826295. One of the people in the video was...
  30. M

    Visitors - Exhausting Aren't They?

    I was wondering if anyone moderately affected like myself finds being sociable with those outside the family totally exhausting. I have several friends who say they understand CFS/ME but have no real insight into the condition. I try to only see people very infrequently in this group as it...