Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Does anyone not have pain but just weakness?

Discussion in 'Pain and Inflammation' started by nikefourstar, Jan 19, 2017.

  1. nikefourstar

    nikefourstar

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    just curious if anyone that's like me only experiences weakness and not pain
     
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  2. Cheesus

    Cheesus Senior Member

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    I don't have any pain at all.
     
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  3. purrsian

    purrsian Senior Member

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    Me! I get achiness all over sometimes, like the kind you get when you have the flu. But I think that's more to do with days that I haven't been very active, so I start to get stiff and sore, rather than anything to do with the actual illness. The weakness is one of my worst symptoms lately. When I'm in a crash, my muscles feel so empty and weak, even using a computer mouse seems like hard work.

    It goes against what most doctors define CFS as and I get surprised expressions when I say I've never had pain symptoms. But then most of them are also surprised when I say I never get colds/flus etc, which is actually reasonably common in CFS patients. I also used to find all the definitions focused on sudden onset and how patients were super active and overworked themselves (I was opposite of all of that) but in recent years, literature is getting better at describing the range of experiences we have. Hopefully they'll clue in soon that we don't all have pain problems!
     
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  4. AndyPR

    AndyPR RIP PR :'(

    I'm a no pain sufferer too. Aside from PEM if I overexert, my main symptoms are brain fog and lack of stamina.
     
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  5. justy

    justy Donate Advocate Demonstrate

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    I don't have widespread body pain like others, have had eye pain and joint pain that comes and goes, but not of the type you hear M.E patients complain of. Occasionally also get flu like pain, but again its not all the time.
     
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  6. Molly98

    Molly98 Senior Member

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    @justy

    I get really bad eye pain, in the back of my eyes when I am bad it can be bad for months and I am unable to read or use the computer and have to wear and eye mask for a great deal of the day because also light sensitive, but the only way to stop the pain from worsening is to rest and close my eyes. I find it one of my most debilitating and painful symptoms when it's bad. I was wondering if you had any theory as to what may be causing it. I also have POTs and eye pain seems to be worse when I am in a bad flare up so I was wondering if there is a possible connection there and with over stimulation of the sympathetic nervous system. Would be interested to know your thoughts?
     
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  7. Thinktank

    Thinktank Senior Member

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    No, i don't suffer from bodywide pain. Sometimes aching joints and a stabbing sensation in the brain.
     
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  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    No pain, no muscle weakness.. Lactic acid build up in legs, more pronounced after exertion.
     
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  9. TiredSam

    TiredSam The wise nematode hibernates

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    No pain except headaches, occasional aching muscles but nothing major.
     
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  10. UKmum

    UKmum

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    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.
     
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  11. nikefourstar

    nikefourstar

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    Your son sounds a lot like me,, so we're all his symtoms immediate? Also how long has he had this sickness? @UKmum
     
  12. AndyPR

    AndyPR RIP PR :'(

    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. :)
     
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  13. UKmum

    UKmum

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    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.
     
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  14. Snow Leopard

    Snow Leopard Hibernating

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    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.
     
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  15. Zombie_Lurker

    Zombie_Lurker

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    For over 15 years I have had constant muscle and joint pain as a symptom. When I am at my most severe I also have muscle weakness as well.
     
  16. JamBob

    JamBob Senior Member

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    I don't get pain - weakness and lack of energy are my main daily symptoms.

    If I over-exert I get a really bad lactic acid pain in my calf muscles (mainly) but I try not to over-exert.

    I always assumed that pain was more of a fibromyalgia issue.
     
  17. JaimeS

    JaimeS Senior Member

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    Sometimes I get pain, but it's one of my least concerning symptoms (a 2 / 10 on the pain scale, usually). Weakness is a far more pressing issue in my case, as when it's pretty bad I'm effectively paralyzed.
     
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  18. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Right now I ache all over and it's a loud sensation but early on I don't remember it being a concern. For me the specific symptoms have changed quite a bit over time, for better and worse. Weakness worries me more than pain though. Pain is more of an endurance test of character. Can I be in this much pain and not snap at my partner or dog?!
     
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  19. Dechi

    Dechi Senior Member

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    No muscular pain for me, except for bad posture from siting too much. Headaches, sometimes. Lactic acid 24/7 and a total lack of muscular endurance, ie I will start shaking and hurting if I use a muscle more than a few seconds more or less, depending on the shape I am in.
     
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  20. Molly98

    Molly98 Senior Member

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    @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?
     
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