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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. L

    Are you able to drive?

    It;s funny as the cognitive issues and fatigue were never the main problem for me. It was being unable to use my legs. I changed to an automatic but unfortunately even that was too much. My legs would go weak and fluey after a very short time and my body would go into a kind of shock with heart...
  2. L

    Are you able to drive?

    No one else gets the muscular issues/exercise intolerance while driving?
  3. L

    Delayed post-exertional malaise (PEM): can it be caused by mental over-exertion alone?

    I can tolerate mental exertion better but after an hour I'm done in. My physical tolerance is much poorer. Interestingly socialising is difficult because of the physical effects of talking as much as the mental side. My chest feels v weak after talking.
  4. L

    Fibromyalgia or ME/CFS?

    A relative of mine has a diagnosis of both m.e and fibro but I've always felt her issues are more fibro. Obviously I'm no doctor, but she can't relate to the PEM cardiac or immunological issues. She mainly seems to experience exhaustion and muscle pain, but she has been to physiotherapy (gulp)...
  5. L

    What Is Your Body Temperature? Rethinking 98.6

    Exactly the same here! I always feel like I'm running a temp but it's always lower than normal. I even feel clammy sometimes but it's still below normal. Really strange.
  6. L

    What Is Your Body Temperature? Rethinking 98.6

    Mine ranges from 36.0 to 36.8 depending on my cycle - it definitely seems that a lower temp is common in m.e.
  7. L

    Cardiac issues -is it worth seeing doctor?

    I went to see a different doctor today and I couldnt be more pleased with the appointment. I brought some information and my heart measurements - some are under the 30bpm requirement for pots but some are massively over. It seems to depend on time of day and whether or not I had eaten...
  8. L

    Cardiac issues -is it worth seeing doctor?

    Thanks everyone for your help I really appreciate it. I'm going to go to the doctor next week with info and readings and ask to be referred to the specialist you mentioned Ryan. Fingers crossed I get listened to.
  9. L

    Cardiac issues -is it worth seeing doctor?

    Thank you Samanatha that is really helpful. I hadn't thought about taking readings but that sounds a really good idea. I will take the NHS print out as well as she might take it more seriously if its the NHS. I'm thinking about going to a different doctor which would be a gamble but the one I've...
  10. L

    Cardiac issues -is it worth seeing doctor?

    No worries thanks for taking the time to reply anyway.
  11. L

    Cardiac issues -is it worth seeing doctor?

    Hi thanks for your reply. I probably should have made it clearer that I did have an ecg a few years ago when my cardiac symptoms were especially bad and everything came up normal. I was in hospital overnight then sent home with beta blockers. I've had all the exclusion blood tests several times...
  12. L

    Cardiac issues -is it worth seeing doctor?

    I've had cardiac issues with the m.e for a long time - when they started I'm pretty sure it was POTS as I had to go into hospital with a heartrate of over 200bpm on sitting/standing only. That was a few years ago and I was given beta blockers as cardiologist thought it was stress. These days due...
  13. L

    Poll: What Gives You the Most Hope for a Cure?

    There definitely seems to be more awareness now. A lot of people know someone with it and/or have more understanding about the fact it has been greatly misunderstood over the years. I just hope the funding keeps coming and it provides enough to get some solid answers about what's wrong with us.
  14. L

    New discovery in POTS (and possible reversal of epigenetic origin)

    When I went into hospital a few years ago displaying severe POTS symptoms upon sitting up/movement no one had a clue what was wrong, they did an ECG, decided my heart was fine and told me I was just stressed. Even the consultant cardio said that. Its scary really, for the 21st centuary. There is...
  15. L

    Poll: What Gives You the Most Hope for a Cure?

    The final option made me giggle. But seriously, I have no idea. One thing is for sure: I have much more faith in a breakthrough coming from the US than I do from the uK.
  16. L

    Flare of the

    I used to feel fluey and in a state of PEM permanently. These days I have stabilised more so I tend to feel fluey if I've done too much, which for me is lterally walking 5 minutes or doing too much typing or reading. I have to pace very carefully. This is obviously my opinion, but walking half...
  17. L

    Poll: How Long Did it Take You to Begin Treatment?

    I was never offered any treatment.
  18. L

    Poll: Do You Believe Prolonged Periods of Rest Can Lead to Remission?

    Obviously I don't know for sure and it probably depends on the individual, but my concern about prolonged rest would be that my muscles and heart might get used to not doing much and struggle even more when some activity is resumed. I have found that when my illness is particularly active (i.e...
  19. L

    My biggest fear is deconditioning

    Aurator your post really touched me, it's so true. So many people fighting chronic and invisible battles, often being disbelieved by medics and even loved ones in the process, and yet keep going each day...that is true strength.
  20. L

    My biggest fear is deconditioning

    It would be impossible for me to do any exercise when lifting the slightest thing makes my arms weak and heart pound. Just doing daily living tasks is a struggle- I know it's bad when cleaning my teeth makes me feel like I've done a workout. Just shows any exercise must be considered on a case...
  21. L

    Loss of appetite with pem

    I get the migraines too, they are usually one of the first signs that I've overdone it. They are one of the few things that can make me cry.
  22. L

    My biggest fear is deconditioning

    My leg muscles are non existent. Literally years being mainly housebound have put paid to them. My legs are flabby and horrible but to be honeest after being so severely ill I've got to the point of accepting them along with everything else. Resting and pacing has for me led to a small amout of...
  23. L

    Loss of appetite with pem

    Nellie I hadn't heard that before, very interesting. I definitely get the sense that my body needs time to repair itself. Unfortunately I'm quite thin although not as thin as I used to be, but I struggle to gain weight and dont like not eating especially as I need the nutition. But right now my...
  24. L

    Loss of appetite with pem

    When I've really overdone it, it's as if my body has shut down and I can't eat properly. I try to because I know not eating won't help but my body says no. I wonder if trying to deal with the after effects of the exertion is all the body can cope with and eating just adds more stress? Anyone...
  25. L

    instant flu-like symptoms instead of PEM

    Sounds like I was a few years ago. I would get fluey legs after any amount of walking, going up or downstairs, even walking too fast across my lounge floor. Since I have stabilised a bit, I only get severe flueyness when I have really overdone it, and then usually 24 to 48 hours later. I...
  26. L

    Dormant vs activated immune system

    Deceptivelyslow that makes sense what you say about the loss of control of the immune system. It's def gone a bit haywire. Im going to look into the research a bit more as I don't know much about it.
  27. L

    Dormant vs activated immune system

    That's absolutely fine thanks in advance for taking the time to explain.
  28. L

    Dormant vs activated immune system

    Thanks for your reply. I'm sorry for what your son went through. Sadly I completely relate as I also get severe allergies and sinus issues that are worse during pem and times my immune system is more active. Fortunately I don't get anaphylactic symptoms. I posted about that and it was suggested...
  29. L

    Dormant vs activated immune system

    My experience of M.E has led me to believe that my immune system activates some or all of the time. In the last couple of years when I've been more stable, I feel exhausted all of the time, experience muscle fatigue and general aches and pains, but my immune system isn't so active. It's like...
  30. L

    THE DIET for ME/CFS?

    It's kind of frustrating as I find a healthy diet stops me from getting worse (which especially happens if I consume my main problem foods) so i need to maintain it, but so far I haven't seen any major improvement. Not getting worse is a definite bonus though. I know someone with m.s whose diet...