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What is the course of your ME/CFS?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by JaimeS, Nov 12, 2017.

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What is your ME/CFS course like? (Please answer only if you've been sick for 6-mo or more.)

  1. Relapsing-remitting (periods of better wellness and periods of worse wellness)

    34 vote(s)
    31.5%
  2. Secondary-progressive (relapsing-remitting, but with a slightly worse 'recovery' each time)

    32 vote(s)
    29.6%
  3. Primary-progressive (gradually worsening with no relapsing-remitting pattern)

    22 vote(s)
    20.4%
  4. Progressive relapsing (gradually worsening, with occasional sharp drops in wellness)

    20 vote(s)
    18.5%
  1. 1gooddog

    1gooddog Senior Member

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    My pem comes from physical exertion . Which sets off chains of events. But one of the worst, other than muscles giving out is the constant vertigo with eyes not always in focus. Over the past 22 years I thought I had beaten it. Several times. They were remissons. Which became shorter and more incomplete. The relapses have totally taken over.

    Why does my head feel soooo heavy.
     
    Stretched likes this.
  2. Wishful

    Wishful Senior Member

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    Have you read my thread on cumin as a PEM blocker, and given it a try? It's still effectively blocking my exercise-induced PEM. I'm still waiting for someone else to give a definite 'yes it works for me' or 'no it doesn't work for me' response, which really surprises me. I thought there'd be at least dozens of people in this group desperate for possible relief from PEM, and this is a simple, cheap, safe treatment.
     
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  3. Stretched

    Stretched Senior Member

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    What’s the theory of why it works or is it happenchance?
     
  4. 1gooddog

    1gooddog Senior Member

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    I would be interested in the details. I do not do hot and spicy. However I have used cumin in cooking. In a small amount I can tolerate it.
    I recently tried old fashioned plain aspird and true trin. My nasal passages are clear, my heart has calmed down and I no longer feel winded.
    I am in favor if old treatments. No expensive designer drugs with all those possible side effects.
    I will try the cumin.
     
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  5. Mel9

    Mel9 Senior Member

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    I think it works for me. I forgot to take my daily cumin tea this week and was in bed for 4 days with PEM caused by a long car trip. I can never be 100 perc sure but it is certainly worth trying. (And is delicious)
     
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  6. 1gooddog

    1gooddog Senior Member

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  7. 1gooddog

    1gooddog Senior Member

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    I have to apologize for my auto correct.

    It was supposed to read aspirin and ? I don't even know what I write after that.!

    I used to drink cinnamon tea. Then I read the benefits of turmeric. Have both but out of cumin! Will have to wait til next grocery trip. Also ginger has been something I have tried. Will become more intense with these teas.
     
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  8. Wishful

    Wishful Senior Member

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    You can follow my experiments in the thread Possible PEM Blocker in this sub-forum. I don't have a theory for why it works. It's just something I observed by chance, and verified its effect by experimenting.

    Cumin isn't hot, and while I don't really care for the taste, I don't find it unpleasant. I just take a level tsp of ground cumin (no-name store stuff). I hold it under my tongue for a few minutes, since I think it works on the brain, and taking things sublingually is more efficient at getting the chemical to where it does the most good (and least bad if there is any). For me, it blocks exercise-induced PEM 100% for about three days. It starts reducing existing PEM symptoms after 2-3 hrs.

    Cinnamon and turmeric, along with several other spices that are antioxidants or peroxynitrite scavengers, make my symptoms dramatically worse, so I have to avoid them. Cooking doesn't seem to affect cumin's effectiveness.

    Perilla is also rich in cuminaldehyde, so it might work as well. I haven't had a chance to try it yet. Maybe I'll order some seeds this year. It says to plant after temperatures are reliably over 8C, so that's not happening soon (a few years ago I had frost June, July, and August). If cuminaldehyde works for you, but you detest the taste, you can give perilla a try.
     
  9. 1gooddog

    1gooddog Senior Member

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    Thank you for the info and how you take the cumin.
     
  10. Wishful

    Wishful Senior Member

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    The first few times I took cumin (more than 1 tsp) I also felt a reduction in my baseline symptoms, which I haven't felt recently. I'll have to try a larger dose next time to see if that helps. It's still an experiment in progress.
     
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  11. 1gooddog

    1gooddog Senior Member

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    My condition is fully systemic. SEID. A full body hypersensitivity.

    The aspirin therapy turned my struggling heart back into a normally beating heart. It also took the swelling away in my nasal passages. Those other syndromes mentioned are not a good fit. I have spots on the brain. Why, I don't know.

    I contracted strep in 1987. Only symptom was massive headache that lasted a month. A CT scan revealed swelling of the brain. Prior to that strep had settled in back is spinal cord.

    I had erisipilus in 2013, on my face. I feel all of this is very significant.
     
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  12. Stretched

    Stretched Senior Member

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    I’ll be darned... . I’m on 2nd day of awful PEM after moving some furniture Monday. ‘It hurt to walk to the mailbox, very slowly. Well, I took a Cumin capsule and later an infrequent Tramadol and hit the sofa. About 3-4 hours later, now, the fog has lifted and the systemic pain has gone down to tolerable, about 2 out of 10/worst, from a near 8/10, and hardly able to walk normal.

    Your post has inspired this non-scientific effort and I’m usually pretty quantitative with evidence based efforts. I’m enthused - so far, so good. It’s ~11pm here and I’ll hit the sack ~1am. We’ll see how things are tomorrow. I’ll add 2-3 capsules tomorrow and do some research. Thanks for sharing this otherwise anecdote.:thumbsup:
     
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  13. Wishful

    Wishful Senior Member

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    Yay! It's good to hear that it's helping someone else. I hope that it keeps working for you. If it works for more people, it should get some research attention. Something that reliably affects PEM should be valuable for figuring out what processes are involved in PEM. Test sample with PEM; test sample with PEM blocked; what changed?
     
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  14. Stretched

    Stretched Senior Member

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    it’s sill thumbs up on next day after PEM onset and abatement after Cumin. ‘Even got out to do some errands. FWIW, I doubled dosage today.
     
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  15. 1gooddog

    1gooddog Senior Member

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  16. 1gooddog

    1gooddog Senior Member

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    Isnt tramadol a narcotic painkiller?
     
  17. Stretched

    Stretched Senior Member

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    It is. I see your allusion but I’ve used it sporadically for light specific pain, dental, short acting over the years, not for PEM. I’ve tried it in the past which it doesn’t much affect, if at all. If it did I would take it regularly and ongoingly during PEM.

    For example, I didn’t take it today but did double up on Cumin which was a first. Normally, the PEM would continue for about a week, especially having been so severe the first day. Not so this time with Cumin.
     
    Last edited: Mar 30, 2018
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  18. Stretched

    Stretched Senior Member

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    12:30pm: Hmmm, just up for the day - crashed again, from errands out yesterday - weak, tired, sleepy, pained. We’ll see if Cumin works.

    2:00pm: ate brunch, on sofa. Feel like hell. ‘Don’t think anything’s going to help this! Just have to ride it (PEM) out with rest... .

    *’Sorry to be a post hog - just trying to report effects of anecdotal Cumin trial.
     
    Last edited: Mar 30, 2018
    Mel9 likes this.
  19. 1gooddog

    1gooddog Senior Member

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  20. 1gooddog

    1gooddog Senior Member

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    Sorry, no intimation or allusion intended. I was kind if thinking out loud. I occasionally take hydrocodone for pain. I have taken lorazepam for many years as a muscle relaxer. Seldom used, but sometimes drugs are helpful. I have eye muscle spasms, actual corneal muscle issues all leading to lack of focus and double vision. The last time I sat in the sun on my deck, the bright sun glaring in my right eye caused the strangest sensation. Not only was I blinded, but I could actually see the rapid opening and closing of a colorful aperture. Like a kaleidoscope. While wearing sunglasses. Lorazepam helps vision and heart palps/irregularity.

    Have never used tramadol.
     

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