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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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Search results

  1. R

    Walking getting harder...

    Ive been in the stroke ward for a few days for the left side paralysis. No clue there either. No test shows anything at all... Which is when they said it was conversion disorder. Happens to some extent daily... Worst of all my symptoms x
  2. R

    Walking getting harder...

    Sorry I don't know what LDN is? My issue on top of muscle fatigue is like a semi paralysis.. Left side only... But affects whole arm and whole leg. Its like a complete weakness. Would whatever LDN is help with that?
  3. R

    Walking getting harder...

    Thanks all, budget just can't stretch to a car, I'm a new driver so Insurance is just crazy. Hopefully it will start to decrease once I've had my licence a bit longer. I often rest when walking... So the chair/cane idea is a good one. Thanks for all your replies x
  4. R

    Walking getting harder...

    So I used to walk roughly 40 miles a week... I've never been a gym goer so this gave me all the activity I needed. Two children (8 and 2) and a sole parent I have lots of getting around to do... School runs, clubs, work, supermarket etc. I left my job as a project manager at the end of Feb...
  5. R

    When you're too exhausted/sleepy to open your eyes...

    I use binaural beats too, not just when tired, but when over sensitive to sound and activity, or in one of my many periods of motion sickness... It helps to rebalence me I find!
  6. R

    Heartburn... Not sure if right thread?

    Evening all, new to ME.. Only a couple of months into diagnosis so symptoms are still all over the place. Short and sweet... Does anyone get heartburn really bad? Ive only ever suffered during my pregnancies but its so extreme lately that I've done 3 tests in the last 10 weeks! It just won't...
  7. R

    Similar time of day - energy outbursts?

    @Wolfcub thanks, I have my next telephone apt with GP to discuss blood results... I've asked to have my b12 levels checked...bizarre they haven't checked it in the 12 blood tests I've had since November! I read that b12 injections can help with energy levels for sufferers. Whether I'll get it is...
  8. R

    Similar time of day - energy outbursts?

    @taniaaust1 @Wolfcub my problem is I HAVE to get up. Doc often says if its that bad stay in bed....however I am solely responsible physically and financially for my two boys so its not as simple as just staying in bed! I would love to, and in fact I do enjoy a lie in or a day on the sofa when my...
  9. R

    Similar time of day - energy outbursts?

    @Wolfcub yes I also have days where there is nothing and I think I'm free of it. My worse symptoms at the minute are neuro, the sharp stabbing pains etc last most of the day, everyday and worsen with PEM. They seem to get worse around 8pm ish... As soon as I rest but my energy like yours does...
  10. R

    Similar time of day - energy outbursts?

    Thanks so much for your reply. I suppose I have this awful feeling that one day I might not have the energy anymore so when I comes I use it. I know it's not the right thing to do but I'm in such a confusing state of denial... Like I know I sick, I know I'm a different person to six months ago...
  11. R

    Similar time of day - energy outbursts?

    So, newly diagnosed, took around 9 months for them to say its ME. I couldn't give you a run off of my symptoms they're so varied. Anything from sharp neuro pain and burning skin, to extreme fatigue and legs in particular feeling like lead. Left my career as an IT Project manager 60 plus hours a...