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Why am I suddenly so much worse?

Discussion in 'General ME/CFS Discussion' started by NilaJones, Aug 17, 2016.

  1. NilaJones

    NilaJones Senior Member

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    Hello folks :)

    I have not been around much lately... I have been too sick much of the time, and too busy catching up when not sick. But I have reached the point where I think there is some reason I have been sicker, and it's not just from overdoing things when I am feeling better. I am hoping maybe some of you folks can help me figure it out!

    My life has changed a lot in the last couple of years. I have found that my health is a lot better if I spend winters in a warmer climate, and have arranged my life to make that possible. It is a lot of work, though, basically moving house twice a year. Most of my newfound energy goes into moving and recovering from moving.

    But this year, starting around january, I have been not doing as well. I have had 3 multi-month crashes, and am in one now. Today is kind of an up day so I am grabbing the chance to post while I am well enough to think.

    I have been trying so hard to figure out what has changed, why I am feeling worse. I am wondering if it could just be some sort of cumulative effect if I am missing something in my supps. Could you guys take a look at my list and see if anything seems amiss?


    Medications:
    Daily:
    2x200 Celebrex
    2 Claritin
    1-2 mg amytriptiline
    About 10 sprays Nasalcrom
    Topical methocarbomyl
    Topical arnica
    Topical methyl salicilate blend

    Supplements:

    200mg magnesium
    200mg calcium
    18mg iron (I have IDA)
    4mg copper (not the past couple weeks because nausea)
    6mg zinc (not the past couple weeks)


    1-2 mcg B12, sublingual drops or transdermal (yes, mcg, not mg. This is the max I can tolerate. I am like @caledonia)
    scant niacin, transdermal
    Vit D as needed
    0-5 grams vit C as needed (currently 1.5)
    Fish oil
    Capyrilic acid
    100mcg vit K (not the past few months, ran out)
    400mg vit E / tocopherols, gamma-heavy blend
    vitamin A
    B vitamins
    Trace mineral drops

    Diet:
    Tons of greens and fruit and potatoes cooked in oil. A little meat each day. Occasional eggs. No dairy for much of this year due to a bad reaction to some yogurt. Was starting to add dairy back in. It seems to give me increased muscle soreness, but I don't think is affecting fatigue and malaise. Not certain, so stopped again.

    Thanks for any insights!
     
    justy likes this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Sorry to hear that you are declining. I've had moments of much worse than my baseline functioning and it's awful.
    I can't advise in the way you are asking but because I know nothing about how things work I would start by just stopping anything I'm taking (or tapering as needed) unless it's essential to take. That might give you an opportunity to assess how you're doing without them and then you can reintroduce things in an organised way (just like I always do cause I listen to my own advise--NOT).

    But it might be an option if all else fails.
    But I hope you just improve even if there's no rhyme or reason to it.
     
    Hutan and NilaJones like this.
  3. Snow Leopard

    Snow Leopard Hibernating

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    I personally do badly on amytriptiline, but your experience may differ. I have no insight otherwise.
     
    Last edited: Aug 18, 2016
    Valentijn likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    " I have found that my health is a lot better if I spend winters in a warmer climate,"

    Consider if molds in one area may be worst then the other.

    ...

    it may not be anything you are doing or not doing which is causing a worsening, this illness can just at times go into a decline for no real reason we can tell.
     
  5. Valentijn

    Valentijn Senior Member

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    Amitryptiline made me feel really awful.
     
    Mij likes this.
  6. NilaJones

    NilaJones Senior Member

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    Thanks everyone, for the good wishes :).

    @Valentijn , @Snow Leopard I take a micro-dose of amytriptiline, about 1/100 of a normal dose, because I am very sensitive to it. It helps with muscle spasms. I take it at bedtime, because it does make me tired but wears off by morning.

    @taniaaust1 I react a little bit to mold. Other allergens are worse in one area than the other -- but this flare up has been going on for 8-9 months now, and in both areas.

    @Snowdrop I could give that a try. I did stop and restart a bunch of things recently due to stomach irritation, but not all the vitamins.
     
  7. JaimeS

    JaimeS Senior Member

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    Believe it or not, I'd ditch the fish oil.

    Been recommended to me a bunch of times so for awhile I kept trying it. It didn't induce huge crashes like you describe, but I was significantly more fatigued on it. Switched to phosphatidylcholine and DHA and those I seem to do all right with.

    I am so sorry things are worse for you. I hope you're back to 'your baseline' soon!

    -J
     
  8. justy

    justy Donate Advocate Demonstrate

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    hI, sorry to hear things are worse for you. Sometimes I think small increments of doing more when better can eventually lead to more severe crashes or worsening - I have had this happen to me before now - moving twice a year must be hard! Sorry I have no insight for the meds etc.
     
    taniaaust1 likes this.
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    There has been some recent discussion on other threads about if you use magnesium then also taking some potassium is helpful as it is needed as well. I mention this because you mentioned muscle spasms.

    Obviously, no megadosing on K+ but incrementally increasing along with the Mg. Also found with Mg malate the malate helps as well.

    These things can be hard to sort out. As always the best tactic is rest.
     
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  10. TigerLilea

    TigerLilea Senior Member

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    Have you always taken the magnesium supplement or is this something fairly new? I know of several people (who don't have CFS) that find that magnesium makes them very sleepy, even at low doses. I used to take 500 mg of magnesium twice a day (as per doctors instructions) and after about a month, it left me pretty much comatose until I stopped taking it.
     
  11. Mary

    Mary Senior Member

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    @NilaJones - I get muscle spasms and very tired when my potassium is low, even though it's always low normal on blood work. I drink a lot of low-sodium V8 and also take a potassium supplement, in addition to magnesium and a ton of other stuff. Since I started the extra potassium, I've avoided one major cause of fatigue for me.

    BTW, I did horrible on amtriptiline also - I could only stand it for 2 days. I always thought it had the worst brand name - Elavil - because it did the opposite of elevating anything --
     
  12. caledonia

    caledonia

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    Couple of ideas -

    1) If you're taking the caprylic acid for bad gut bugs such as candida, it may have worn out. You could try switching to grapefruit seed extract or another herbal antifungal and see if that helps.

    I used to rotate between caprylic acid, grapefruit seed extract and cat's claw - each one would last about a year, then I'd rotate to the next one, then back to the original after a couple of years.

    The candida caused a crash situation - more fatigue, more achy and flu like symptoms, and even low fevers.

    2) can you specify more about the "B vitamins"? What brand, how much. Are you getting more methylfolate than B12 and thus causing a methyl trapping situation?

    3) Since you're taking methylation supplements, you may indeed be needing potassium as others have mentioned. You may need also need a lot more mag than you're taking. I felt worse on calcium after a few weeks, so dropped it. If your electrolytes are not balanced, you can have things like muscle spasms, heart palps, restless legs at night screwing up your sleep and causing more fatigue and brain fog. Sodium may also be needed if you're craving salt or salty foods.

    4) Learn self muscle testing to determine if the things you're taking are needed or not, too much, too little, etc.

     
  13. Deepwater

    Deepwater Senior Member

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    I also did badly on Amitriptylene - only a very low dose but it gave me muscles spasms and trembling nerves which got worse every night. Only lasted three nights. I too have recently found I benefit from potassium - helps the muscle tightness a lot. Even on supplements I am right at bottom end of normal range for serum potassium, which is odd because potassium-rich foods are all my favourites. I wonder if there is a correlation between potassium problems (whether blood levels or just whole-body due to channelopathy) and intolerance of amitripyelene.
     
  14. Mij

    Mij Senior Member

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    @NilaJones sorry to hear you are feeling worse. Sometimes we just feel worse and it's difficult to know what is causing it. Every year during the summer months I discontinue vitamin D supplementation because I can sit out in the sun for 15 minutes, as soon as I start supplementing again I feel terrible, achy, run down/ and just exhausted.

    You wrote "vitamin D as needed". Have you noticed a difference when you take more?
     
    Snow Leopard likes this.
  15. Kati

    Kati Patient in training

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    Please consider that your medication/supplement/ diet regimen may not be the culprit, that it could simply be the course of the disease, or more stress in your life, or another component adding up such as hormonal changes or other disease process.
     
  16. NilaJones

    NilaJones Senior Member

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    Thank you so much, everyone! The forum software did not forward your replies, but I thought just now I would check in and here you are!

    I will try to answer everyone's questions:

    I get an enormous amount of potassium in my diet, far more than is legal to put in supplements. But I will try taking some in pill form.

    @JaimeS, I get a marked increase in inflammation and pain if I skip the fish oil. Have you found sources for phosphatidylcholine and DHA as stand-alones? Or do you mean taking lecithin and cod liver oil?

    @Mij I feel better when I take the vit D. It could be that I am still too low... my doctor has been 'working' on getting me another test, for the past month.

    @caledonia I ordered some cat's claw based on your post, and I will try upping the magnesium. See above for comments about potassium. I will read up on methyl trap -- I have been at the same dose of folate an B12 for several years, but you make me realise a problem could have built up. I take my B vits individually, not in a blend. I am too tired to look up brands and dosages but will when I can.

    Reading somebody's marvellous thread on PEM yesterday (was that @Hip ?), I tried baking soda. Today I felt less bad than expected, so I took some more today. Will also try adding in vit K (I got a new brand) and maybe taurine. Ordered some Co-Q.

    I am also wondering if I am eating too many potatoes (my only complex carb). Might try cutting them out for a few days.

    I don't THINK I have more stress in my life. And yes, as some people said, it could be random or impossible to determine what's wrong. But I want to try :).

    You folks have given me great ideas of stuff to work with, thank you! More suggestions are very welcome also :).
     
    Snowdrop likes this.
  17. JaimeS

    JaimeS Senior Member

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    Yes, I've found them as stand-alones; but if your symptoms worsen if you go off fish oil, I wouldn't do it! My symptoms worsened ON fish oil...

    Re: CoQ-10. My experience here is that PWME who do well on it need high doses (400+mg). Some PWME, on the other hand, it appears to hype up a bit, so I wouldn't start high like that!
     
  18. taniaaust1

    taniaaust1 Senior Member

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    That moving twice a year could of finally caught up with you. Moving scores quite highly on life stressor lists even if it goes well.
     
    Kati likes this.
  19. NilaJones

    NilaJones Senior Member

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    Thanks @JaimeS and for the coQ info. I didn't know thst and it is very helpful!

    @taniaaust1 you could be right.

    I realise I did not really describe what is going on, what i mean by 'worse', so I will try :).


    What I am experiencing could be described as much increased PEM. Or as a flu that will not quit.

    I rest a couple days, then I feel half better (half as good as my normal), then I do stuff, then the next day I feel HORRIBLE -- nauseous, fevery, etc.

    Been in this cycle continously since july 1 and also most of this year with some 1-2 week periods of normal, every few months.

    The baking soda does seem like it might be helping... I also took 2 vit K last night and was up for several hours in the middle of the night. So maybe running out of that was a bigger factor than I knew.
     
    JaimeS likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    that indicates you are actually doing too much.. you are in a push and crash cycle of things. When we do too much, its normal for us to either rapidly or slowly get worst. You need more rest time, not jumping up and doing whatever you can as soon as you feel half better.

    give yourself an extra day rest between these bouts and when you go back to doing things, try doing half of whatever you are doing now to see how that goes. You need to work out how much you can do and still remain kind of stable with things.

    Once you find a point which seems stable, you can try to increase "a little" to really work out how much you can do without making youself worst to try to work out the ideal activity level for you.

    Dont try increasing again after a small increase for 2-3 weeks as sometimes it can take that long to see a slight negative impact of an activity level.. try rating yourself too and keeping a list of any symptoms you get and how often you do as it makes comparison with a couple of weeks before easier.

    You'll do better when you are more familiar with how much you can safely for you do. Good pacing is one of the best ways we can help ourself at this point of time with this illness. its the foundation of things.

    I suggest to work on this pacing first and then once you have that going well, then play around with other things to see how much further you can improve (otherwise it may be harder to tell what is doing what and could mistake the affects of good or bad pacing with whatever else you are trialing)
     
    Last edited: Aug 19, 2016
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