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Severe PEM

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Belle72, Feb 3, 2018.

  1. Belle72

    Belle72

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    Hello, I m hoping to find out how severe other people's PEM has got? At the beginning of the week we had some major DIY going on and of course I helped as much as I could and it really was too much. By Thursday I was feeling very unwell, severe dizziness, bodywide pain, my legs felt like heavy lead weights and I struggled to even get upstairs.

    This has continued and still whole of my body is still painful both muscles and joints, vertigo is still there, my scalp feels lumpy which is new, and today I ve noticed my hands feel painful and weak and also I feel tired when chewing and swallowing (I'm not coughing or choking but it's taking numerous attempts to swallow food).

    Can someone tell me if this all sounds familiar or if maybe there could be something else going on as well as the ME. Thank you in advance x
     
    Last edited by a moderator: Feb 3, 2018
    Mel9 likes this.
  2. Wishful

    Wishful Senior Member

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    Not sure if you're suffering from anything beyond PEM, but I've just spent the last two days shovelling snow (30 cm dense snow) without suffering from PEM as I otherwise should have. What works for me is cumin; it just effectively blocks the PEM. See my thread in the PEM sub-forum if you're interested. A level tsp blocks PEM for me for three days.
     
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  3. Runner5

    Runner5 Senior Member

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    PNW
    I do better with PEM if I know it's going to be like - 1 hour of activity and I can prepare for it, have my sport drink, have a recovery shake and get plenty of rest. But all day outings and having to do stuff in a prolonged manner just kills me off. I had severe PEM last week, suddenly had to do something and it took awhile and I wasn't prepared, and crashed later and just got nothing done, I just sat for the full week. That's so hard on the body. But every little thing feels like climbing Mt.Everest.

    Your throat reaction sounds like a gastrointestinal problem, that seems to go along with a lot of people with CFS. I think quite a few of us don't digest our food too well or get the nourishment from it we require to sustain energy.
     
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  4. helperofearth123

    helperofearth123 Senior Member

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    If PEM has been triggered by accident it could warrant some pain relief. I wouldn't know which type is safest to prescribe but GPs can prescribe pain relievers, though regular ones for PEM wouldn't be a good idea, in this case it looks like it was accidentally triggered so you definitely deserve some relief! Getting it sorted might be a hassle though so I don't know what to suggest specifically.

    Hope you feel better soon.
     
    Mel9 likes this.
  5. Wishful

    Wishful Senior Member

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    For me, common pain relievers (aspirin, tylenol, ibuprofen) don't do anything for PEM or ME symptoms. Time works. Rest might help. If you really overdid it, it might take a few days for your body to stop producing cytokines which might be triggering extra PEM. If it were me, I'd take cumin, and if that didn't help, I'd just wait a few more days to see if the extra problem goes away on its own...and next time my friends asked for such help, I'd be more willing to say that I'm not able to help. I usually offered to help friends, but it took a few such incidents to really convince me not to offer help that will cause me severe symptoms. It's just reality for us.
     
    Mel9 likes this.
  6. Belle72

    Belle72

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    How do you take the Cumin? Is it a supplement/tablet/powder?
    Thank you
     
  7. notmyself

    notmyself Senior Member

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    happy for you! any idea why cumin have such an effect on you?
     
  8. Mel9

    Mel9 Senior Member

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    NSW Australia
    CoQ10 helps me. If I think a PEM is coming, I double my normal dose for a few days.

    I also think cumin may have helped me avoid PEM (alyhough it's hard to be totally sure) and cumin tea is delightful.
     
  9. Wishful

    Wishful Senior Member

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    I don't know the biochemical pathway cumin affects, but I'm pretty sure it's the cuminaldehyde that is the active chemical. I think it's affecting the IDO/kynurenine pathway, but really that's just a guess. As for how to take it, a level tsp of ground cumin seems to work well. Larger dose last a few days longer, but don't seem to be more effective. I'm still experimenting with dosage. See the thread in the symptoms/PEM sub-forum for more details. I'm hoping that more people will try it and report on its effect on them. I'm surprised that more people haven't; it's cheap, readily available, and a safe food.
     
    notmyself likes this.
  10. Belle72

    Belle72

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    Thank you everyone that has responded, I m still pretty much wiped out So if I can muster up the energy I will have to pay a visit to the Dr (probably to be told it's all down to ME/CFS/FIBRO). It is making me a bit anxious (and that's not a good cycle to be in for ME) but I have read about the dreaded MND/ALS and am developing an unhealthy obsession thinking are they sure it's ME??? Have I been misdiagnosed???
     

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