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just curious if anyone that's like me only experiences weakness and not pain
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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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@justyhave had eye pain and joint pain that comes and goes,
Your son sounds a lot like me,, so we're all his symtoms immediate? Also how long has he had this sickness? @UKmumWriting on behalf of my 15 year old son- No pain, just overwhelming weakness/tiredness and inability to think. Broken internal drives with regard to eating/sleeping/body temperature.Heightened sensitivity to light/sound/smells/pain. Can hardly sit up in the mornings but can function at about 1st gear in the afternoons and evenings as long as stays within energy limits. Never feels refreshed from sleeping and has poor quality sleep despite strict sleep hygiene (I hate that phrase) Trying to do his maths mock gcse this afternoon- poor chap!
I'm strangely pleased to hear of others without pain as it seems to be a key symptom for others. I'm eternally grateful he doesn't have pain as his pain threshold is tiny... Not sure about onset - crashed in PE lesson physically passed out 2 years ago and has never recovered but looking back he did have a few viruses in the preceding 18 months that affected him badly.
Sorry to hear it's hit him so, relatively, young. Sounds similar, but unfortunately more severe, than I was at that age, please let him know that a random person he doesn't know wishes him well.Writing on behalf of my 15 year old son- No pain, just overwhelming weakness/tiredness and inability to think. Broken internal drives with regard to eating/sleeping/body temperature.Heightened sensitivity to light/sound/smells/pain. Can hardly sit up in the mornings but can function at about 1st gear in the afternoons and evenings as long as stays within energy limits. Never feels refreshed from sleeping and has poor quality sleep despite strict sleep hygiene (I hate that phrase) Trying to do his maths mock gcse this afternoon- poor chap!
I'm strangely pleased to hear of others without pain as it seems to be a key symptom for others. I'm eternally grateful he doesn't have pain as his pain threshold is tiny... Not sure about onset - crashed in PE lesson physically passed out 2 years ago and has never recovered but looking back he did have a few viruses in the preceding 18 months that affected him badly.
Hi there- yes all symptoms were immediate- should have also said he now has low blood pressure and feels faint if stood up long and faints with blood tests. Probably neurally mediated kind of POTS- but not tested. He crashed almost exactly 2 years ago the day before his birthday. We knew it was serious as he couldn't even open his birthday present- Xbox one- and it took months before he could play it. He is a very picky eater and GP initially thought eating disorder but this was discarded- no idea if this was a factor but eating continues to be a problem though we supplement with vitamin/minerals/fish oils and more recently amino acids.Your son sounds a lot like me,, so we're all his symtoms immediate? Also how long has he had this sickness? @UKmum
@Snow Leopard what you describe is very similar to my experience, they eye pain and headaches be very debilitating much of the time. No day without headache, sometimes eye pain mild to moderate but can be very bad for months and months at a time, this only started for me about 15 years in too. I was wondering if you had any thoughts or theories on what may be causing the eye pain, or anything that you find helps?I have mild pain in most of my body (not joint pain though) all the time, along with a permanent moderately painful headache, moderate (and distressing) eye pain a lot of the time (this is a new symptom started after 15 years of illness). Along with the other usual symptoms, brain fog etc.