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PEM vs. med reaction vs. viral die off?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Gingergrrl, Jul 20, 2014.

  1. xchocoholic

    xchocoholic Senior Member

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    Hi @MeSci

    This is why pwcs should keep diaries tho. Most of the non pwcs I know can readily relate certain symptoms to their triggers.

    Since we have so much more going on than non pwcs it's more difficult but doable. It just takes time and patience.

    I was overwhelmed at first but did it because my doctor insisted. She gave me handouts to record my symptoms so that was helpful. When I ran out of those I just used a notebook but the info I recorded was the same as the handouts. It was called the LEAP program. Symptom list was a full page and divided into gastro, neuro, skin, etc etc.

    Recognizing keeping a diary will be confusing and frustrating in the beginning may help. But patterns will emerge.

    This also teaches us how to listen to our bodies. Once you eliminate one or
    More triggers it gets easier too.

    Tc .. x
     
    Gingergrrl likes this.
  2. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Sinclair Believe me, I can't wait to hear the results myself and that is why I've been trying to learn so much about a/v's this week before my follow-up appt. I am hoping my results can help others on the board as much as everyone has helped me. And I was not tested for enteroviruses at OMI as that does not seem to be their focus. My initial infection was mono/EBV with severe throat, tonsils, lymph nodes, etc, vs. a stomach virus so I think that may also be why.
     
    Sinclair likes this.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Oh yes - it is definitely worth doing, and I have figured out a few things as a result of mine (have been keeping a health diary since becoming ill). Mine is on paper so it's not so easy to keep track of what happens when I do this or that - hard to search. But I write it at odd moments and it's easier to carry a small book around than a laptop!

    One thing I have started doing is to note important observations/changes at the top of pages.

    It was my health diary that enabled me to find my PEM delay, which turned out to be 2 days, almost like clockwork, although it's changed since I changed my diet, etc. I'm having difficulty seeing a pattern at the mo!
     
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  4. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @xchocoholic I've kept all different versions of health diaries and at first it was just for meds/supplements (b/c certain ones were with food versus empty stomach, certain ones had to be four hours from thyroid med, etc) and it was too much to keep in my memory.

    Then I started tracking certain symptoms and the most helpful was tracking my tachycardia with different doses of Atenolol and Florinef, amounts of water & salt, electrolytes, etc.

    I have not done anything to track pacing or PEM (in journal form) and not really sure how to best do this?
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Not my area of expertise; I just remembered seeing mention of it. Here is one post that mentions it. Hopefully someone can help (@Sasha?).

    Hmmm - that tag didn't work. Try again - @Sasha.
     
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  6. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @MeSci I read through a lot of the post you linked but some of it was over my head scientifically! Is Professor Jonathan Edwards still on the board now to answer questions? I did not realize he was here!
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    He is still posting on that thread and a few others.
     
  8. xchocoholic

    xchocoholic Senior Member

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    Hi @Gingergrrl43

    Your pem, if you have it, will be clear once you have regular good days. It would be great if you didn't have pem in addition to your other symptoms tho.

    Writing about our symptoms helps us really think about what's happening to our bodies. A slight difference in how we look at a symptom can be important. For ex. I have Paget's of the skull. I'm sure I thought this was just headaches forever before I realized the pain was always above my right eye and on top of my skull. That's when I felt the bone growth. I Googled abnormal skull growth and found paget's.

    I felt better but didn't have good days for the first 2 years after eliminating my food intolerances but I'm a celiac with neuro symptoms and gluten damage can take time to heal. If it heals.
    Having hyperinsulinemia doesn't help either.

    My pem hits within 36 hours but I'm not couchbound until 48 hrs.
    I always have pem after I get out to run errands. So I get out every 3 days. Caffeine pills, minute amounts, were helping me avoid pem but stopped.

    Maybe dividing symptoms into categories would help. The sheets the doctor gave me were divided into categories.

    Tc .. x
     
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  9. xchocoholic

    xchocoholic Senior Member

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    Hi @MeSci

    Great idea to note important changes at the top of each page. I used a red marker but sometimes there were multiples per page.

    On the diet, my doc had me eliminate all common food intolerances, chemicals and anything I knew that I reacted to.

    The idea was to lessen inflammation so my body could begin to heal. It was just the beginning for me. Later tests revealed nutrient deficiencies, leaky gut, candida, parasites, low progesterone, low dhea, hyperinsulinemia, etc etc.

    Gotta rest. Tc .. x
     
  10. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @xchocoholic I guess it is hard to distinguish PEM b/c I do not have regular "good days" yet. I also notice when I have a day in which I go out for a doctor appt and/or errands that I feel significantly worse the next day and it can take 1-2 days to fully recuperate (back to my CFS baseline.)

    I am not able to have anything with caffeine due to tachycardia and don't even have decaf coffee anymore and my body just cannot tolerate it.

    Do you have a copy of a blank sheet that your doctor gave you (of course removing all names, etc!) I would love to see what format you are using as it sounds great!
     
  11. xchocoholic

    xchocoholic Senior Member

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    Hi @Gingergrrl43

    I just tried to get a copy of a LEAP form but I've forgotten how to copy and paste ... lol .... I googled LEAP food intolerance and found it in the fit nutrition site. I think. It was about the third one down and under forms on that page.
    It took me less than a minute to find it.

    I got those forms back in July 2005 so they're long gone. You may find it helpful to list your symptoms by category and make copies of that.

    Feeling worse the day after your docs appt sounds like PEM. Once you feel good regularly this will be obvious. I didn't know what PEM was until I was having good days. I just thought I was fatigued all the time ... duh !! I was shocked when my leg and arm fatigued turned out to be from gluten ataxia. Those symptoms disappeared when my ataxia did.

    tc ... x
     
  12. AndyPandy

    AndyPandy Making the most of it

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    Hi @Gingergrrl43

    I am using a symptom log and an activity log system at the moment. I started this up again due to relapses. I got the daily symptom log summary template from the CFIDS Self Help website. They have a number of different templates for logging symptoms and activity.

    I made up my own daily activity log which has space for an entry for every ten minutes. It reminds me of accounting for time for billable units. Accountants and lawyers out there might shudder at the memory of that.

    I also note symptoms during the day on the activity log. I may expand this soon to include food, but I have a pretty good idea about what causes me problems in that area.

    I am finding these tools useful. They are highlighting how I can improve my pacing and limit activities which make me worse. I realise that although I am doing little, sometimes it is still too much.
     

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