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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. S

    Pins and needles

    you said it wasn't neuropathy? Is your pins and needles constant? What does it feel like? Like what happens when you've been sitting in the wrong position for too long?
  2. S

    Pins and needles

    I have a persistent feeling around my ankles and lower leg that there's a tight band wrapped around it.
  3. S

    Ms vs cfs vs sarcoidosis vs idiopathic

    Mods, It is not appropriate, on these forums, to diagnose another member's medical condition or to urge other members into particular actions (or inactions) regarding their medical treatments.
  4. S

    Ms vs cfs vs sarcoidosis vs idiopathic

    symptomatic help when you don't know what's wrong with you is also like throwing darts. It's even more dangerous than speculation.
  5. S

    Ms vs cfs vs sarcoidosis vs idiopathic

    it's not a question of appropriateness. Nobody here is skilled enough to do it. But that's irrelevant because I'm not seeking a diagnosis. If you want some chance of a diagnosis it involves money, time and plenty of horrific tests eg spinal taps, biopsies, endoscopies etc. And when it comes...
  6. S

    Ms vs cfs vs sarcoidosis vs idiopathic

    Is cfs neuropathy different to idiopathic peripheral neuropathy? How?
  7. S

    Ms vs cfs vs sarcoidosis vs idiopathic

    Well what do you suggest then? There's a thing called a waiting list and I don't get to decide how long it is. Doctors don't care if my neuropathy becomes permanent or not. They can't fix this anyway. That's one thing we can say about all the illnesses in the title
  8. S

    Ms vs cfs vs sarcoidosis vs idiopathic

    But making guesses is not the same as diagnosing. It's the next best thing to it
  9. S

    Ms vs cfs vs sarcoidosis vs idiopathic

    There is no relief from this. I don't believe it. Neuropathic pain is very poorly treated. I want to know what's causing my symptoms so I have some understanding of why i'm being punished
  10. S

    Ms vs cfs vs sarcoidosis vs idiopathic

    Some days I'm convinced it's ms then next I decide it's cfs and sometimes I feel it's sarcoidosis. These are all difficult to diagnose illnesses. We should not underestimate the ability of the patients gut feeling to figure out what's wrong. Doctors are essentially having to guess, alot of...
  11. S

    Ms vs cfs vs sarcoidosis vs idiopathic

    Im trying to decide between them but can't. Can someone help me to decide? I'm not seeking a 100% accurate diagnosis im trying to narrow down the possibilities here while I wait to see the specialists because I just can't sit here and do nothing. I am in pain everyday and I just can't carry on...
  12. S

    Pins and needles

    ME is what fits my symptoms best. Not anxiety. You were the one who insinuated that I was making this up. My instinct tells me it's not anxiety. The patient knows best.
  13. S

    Pins and needles

    Anxiety, stress and psychosomatic disease are just excuses to explain unidentifiable rare or obscure diseases. I don't buy any of it. It's dangerous. Ms is a serious disease. We can't afford to entertain quack diagnoses given the seriousness of my situation.
  14. S

    Pins and needles

    @Sidereal I also said I've been forced to wait to see a neurologist. There is nothing I can do to reduce the waiting time unless I win the lottery. Exercise of course worsens things because it increases breathing so even more CO2 is blown off than at rest. Isn't more oxygen taken in as well...
  15. S

    Pins and needles

    Can peripheral neuropathy actually be tested for?
  16. S

    Pins and needles

    that's an interesting comment about hyperventilation. I have considered it as a cause, but I don't see how it can cause the symptoms I have. If Im getting pins and needles why doesn't it go away if I immediately slow my breathing? And why would it always get worse immediately during a hot...
  17. S

    Pins and needles

    I wish people would stop urging me to see a doctor. I have been put on a long waiting list to see the neurologist. By the time the appointment arrives, all my nerves will be permanently damaged. I am not choosing to not see a neurologist. I am being forced to wait.
  18. S

    Pins and needles

    Yeh but I'm also getting it in both hands occasionally. It doesn't seem typical of spinal compression
  19. S

    Pins and needles

    what exactly were your symptoms? Was it actually pins and needles?
  20. S

    Pins and needles

    Is the pins and needles from ME progressive? Is it actual nerve damage or what's the reason for it?
  21. S

    Pins and needles

    wait a minute somebody just said it's not common in ME and you're saying the exact opposite. It can't be both can it?
  22. S

    Pins and needles

    Does anybody with ME or cfs whatever you wanna call it, have pins and needles in their feet? Or anywhere else? Is this one of the symptoms of it or not? Is it actual nerve damage or reversible?
  23. S

    Suddenly feeling worse

    Gp warned me not to do that. But I'm in the early stages of my illness, whatever it is, so would all these symptoms happen,immediately or could it take months or years to fully develop?
  24. S

    Suddenly feeling worse

    I'm feeling anxious because I don't know what's happening to me and I don't like the idea of living with permanent pins and needles and probably worse symptoms in the future. My symptoms do not seem to fit either with cfs or MS. I generally feel better after sleep. Also I would say I've...
  25. S

    Suddenly feeling worse

    Would a short run confirm cfs If I become fatigued after? Does the fatigue affect only the muscles you exercise or are all of them affected?
  26. S

    Suddenly feeling worse

    Could it be cfs me?
  27. S

    Suddenly feeling worse

    I'm suddenly feeling much worse today than even yesterday. Muscle fatigue, puns needles and vision is going funny. I don't know how this is going to play out