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strange new symptoms

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Sundancer, Apr 4, 2018.

  1. Sundancer

    Sundancer Senior Member

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    everything went well really, Since methylcobalamine I slowly inched up. Was able to take the stairs in the daytime, found that sometimes I go down the stairs without holding the rail. OI was clearly less, slept better, started walking outside most days ( 5 to 8 minutes)

    as I told friend, as if I've gone from 3% energy to 6%, may not look much from the outside, for me it is double. Very careful not to overdo, jotting down sleepquality/symptoms and things done.

    then some days ago I started to deteriorate, but it's not the usual PEM, with PEM i always have sore throat and swollen lymphe and totally unable to fall asleep.

    First i got constipated again, so took a little extra magnesiumcitrate, problem solved, then I found that I was a little nauseous, not too bad though. Such is life.

    Then I woke up after 2 hours sleep, could not get back to sleep and felt real bad...that dead feeling in the body, the heart doing all kind of strange things etc...scary...I do not want that again. then I needed to crap so went down the stairs. After that i could hardly stand so crawled into my downstairs bed. No sleep...just that awful hell of everything coming back. So whole day on my lazy chair reading

    the night after I slept quite well but had very dark poo in the morning, reasonable day, keep calm, don't do things, rest and wait.

    So tonight I again had a very bad night, this morning a had a sort of musclecramp in the calves, but very different as the usual thing. Now I can hardly stand/walk. It is as if my calves can't keep it up.
    And (almost) black poo, getting softer and softer and hurting my but, as if it is acidic.
    Plus brainfog much more then usual.

    But is not PEM, unless PEM has taken a brandnew way to present itself :cautious:
    Is no new virus either, then I would feel really ill, no abdominal pains either.

    so it's strange, if there's someone outthere who can relate to this I'd be interested to hear her take on this.
    I suppose it will go away after some time ( i do hope so anyway) but would like to know what it is.


    ( Visitor I had today told me I should call GP because I'm hardly able to walk :rolleyes::D...I told him I save up the GP for hen I'm really worried... :nervous: )
     
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  2. geraldt52

    geraldt52 Senior Member

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    I can't help you with your specific new symptoms, but something I learned long ago is that any new symptoms I have are usually do to some new drug, supplement, or food that I've started. That's where I'd start looking for the culprit. Also, for me, it has been more common than not that things that first "appear" to be helping something pretty quickly reveal themselves as harming something else. I don't think that people appreciate how screwed up you can get yourself with drugs, supplements, and foods.
     
  3. Shoshana

    Shoshana Northern USA

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    @Sundancer
    I am concerned about the very dark, nearly black bm's you mentioned, twice.
    Without having taken charcoal or know of a specific reason for that part.
    I would watch and hope that color, resumes to more usual.

    It all could possibly be a new, worse type of PEM, but I don't know, of course.

    I am so sorry you have added confusion and feel so awful.

    Keep us posted, please!
    I hope you improve soon, but if not, it seems like you might need to try to be checked.
    Ugh. Not that!
     
  4. Sundancer

    Sundancer Senior Member

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    thanks both of you, @geraldt52 and @Shoshana

    yep, that was the first thing I thought of. I've stopped the latest addition ( ubiquinol) to be safe on that side. See how it goes and later try again. Effects in the long run are much harder to puzzle out, but I am careful. No meds here btw, body cannot handle them and very careful with food and sups.

    thanks, you're lovely. Strange thing is, I'm not concerned really...it is what it is, i try to puzzle out what I can and worrying will not help me. Belly does not hurt. ( not more then the usual I mean)

    I started to take old fashioned bitters for digestion, oh..months ago. Small dosage, about a third of advise. Found that it worked, seem to digest food better and stools that were too light became of normal color. Maybe the bile-production is getting over-enthusiastic now.

    I just wait and see, one of the legs seems to go back to normal, the others hurts like I've walked up a mountain without training, I'm gonna give them a gentle massage with some arnica before bed.

    It's good that you mention the colouring agents though...I do take a herbal supplement that darkens the stool. So when the colour stays as dark, I could try to go some days without. But I'd rather not. Without it I'm bedbound.
     
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  5. lafarfelue

    lafarfelue Senior Member

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    My first thought went to a possible refeeding syndrome resulting from the supplements you take, similar to @geraldt52 's thoughts.

    Maybe your body has used up a lot of the other vitamins and minerals needed to process the methylcobalmin or magnesium citrate, and you need to feed to more of one/some of those? Perhaps worth looking into the body's processing system (sorry, am brainfoggy and forget the term) for the main supplements you take?
     
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  6. Shoshana

    Shoshana Northern USA

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    Thinking of you @Sundancer
    Let us know how you are doing, when you get to it.
     
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  7. Sundancer

    Sundancer Senior Member

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    Thanks @Shoshana
    legs seems to be recovering, left leg still much pain.
    Stool still so dark but normal consistency, and have slept tonight :sleep::sleep::sleep::), I keep as much rest as I can, reading in my lazy chair and waiting for it to get better again.
    This illness teaches patience in gobs...
     
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  8. Mary

    Mary Moderator

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    @Sundancer - You are so right about this illness teaching patience! (that's a positive spin on a horrible condition! :bang-head:)

    I'm wondering about your potassium levels. Starting to take methylcobalamin and/or folate can rather quickly deplete potassium, because they cause your cells to start dividing more rapidly and doing what they are supposed to do. This in turn uses more potassium, inducing a functional potassium deficiency. This is extremely common, it happened to me. My chief symptom was severe fatigue (after an initial energy boost after starting folate). Other symptoms of low potassium include cardiac symptoms (palpitations etc. - you mention your heart doing all sorts of strange things), and muscle cramps. I tend to get cramps or spasms in my feet and lower legs when my potassium is low. And also low potassium makes me lethargic, hard to function.

    A simple thing you can try is to drink several glasses of low-sodium V8 (or low-sodium vegetable juice) which is high in potassium. I don't think one or 2 bananas would do it. And if low potassium is an issue, I think you would start to feel a little better in a few hours.

    When I first started methylfolate in 2010, I'd already been taking methylcobalamin for many years. Anyways, my energy picked up noticeably after adding in the folate for 2 days or so, and then I was hit with severe fatigue. I'd read about the potential for low potassium and started taking potassium, titrating up to 1000 mg a day over 2 or 3 days. And the horrible fatigue went away. I learned that I had to keep taking potassium and still do, 800 - 1000 mg of potassium gluconate a day in divided doses.

    Also, people with ME/CFS can be low in intracellular potassium despite normal blood work. Former member Richvank (unfortunately he died suddenly some years ago) explains why here: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422
     
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  9. Sundancer

    Sundancer Senior Member

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    oh, thanks @Mary , that ties the things together.
    This is so great of all of you, brain was so befuddled but thanks to you I now see what happened.

    The dark stools is detox, now I remember I've had it before, in the year health was going south fast. My former GP ( wonderful guy) told me that. It's the burning acidic feeling + a strange consistency, I do not remember what I had done at the time to trigger detox but he told me to keep it up at a slower rate not to become more ill.

    With such toxic poo in my belly no wonder I got soo sick in the night.:rolleyes:

    the potassium shortage ties in with that, when body is trying to repair itself, you'll get lots of rubbish, with bile flow going again then the rubbish can get out.

    And did have more tiredness indeed, some two weeks already, plus in the last weeks titrated op folate to 400 mcg , and since that bad night strange cramps.
    So I'll take some potassium ( citrate I have) and see what happens.

    It had not occurred to me that I should keep taking it, but it does make sort of sense.

    Me happy:):):), thanks all
    I hope one day to be well enough to contribute here too ( not only ask) but of late I'm mostly on twitter, that's about my attention-span plus, things are going on in the Netherlands, and not all for the good...battle ahead with the psychobabble-boys...:(:mad::cry:
     
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  10. Mary

    Mary Moderator

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    Hi @Sundancer - I'm with you, I think this board is a lifesaver, literally - I have learned so much here!

    Re the potassium citrate - when I first took potassium, I took potassium citrate, and it ended up causing or contributing to a bladder infection. So I switched to potassium gluconate, and have had no problems with it, I've been taking it since 2010.

    Also, you generally should work up to a dose of potassium that works for you - don't take a huge amount all at once, your body can have trouble processing that. I take mine in divided doses, 200 mg with each meal and 200 mg before bed and sometimes even 200 more in the middle of the night.
     
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  11. Sundancer

    Sundancer Senior Member

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    Yes @Mary , I'm a newbie but have learned loads already, great

    never had bladderinfection ( unless you count the time i had been sitting on the ice for too long as a kid :whistle:) but will keep it in mind. I chose the citrate because I tend to get constipated and have used up to 800 mg of magnesium citrate, know that body can handle citrate, no idea about gluconate.

    that is about the way I dosed when potassiumshortage first knocked on door, Just took my second drink of today, feel much better. Even took walk outside for some minutes. Heart is back to baseline again, occasional palp and frequency 80. much better :):):). Good sleep tonight and now sewing dollclothes instead of lying back reading, good!

    thanks a lot :hug:

    Hopefully I'll remember it now, the combination of constipation, heart doing funny, and cramps is my signal of potassiumshortage
     
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  12. Sundancer

    Sundancer Senior Member

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    Thanks @Mary ,:hug::thumbsup:

    this is amazing, I take the potassium now 3 times daily and when i wake up in the night another dose. Then when symptoms receded I started again with the ubiquinol. And now I have energy....and a very deep sleep, and can do things I have not been able to do for years, without PEM...

    I hardly dare to believe this.

    I had forgotten the potassium this midday and took them when I found out about that. Some half hour later energy came back, I've been clearing out the clean dishes etc ( that I mostly leave until dry) then up the stairs to do some dusting. Having cleaned some dusty shelves. Up the stairs,:eek::eek::eek: just like that, :D:D:Dwithout feeling crushed and having palps....:angel::angel:

    yesterday i have been cutting a large mop of ivy ( I had asked neighbor to do it, the looked at it and thought, I can make a small beginning...)

    and no PEM, not at all...very good sleep last night deep and refreshing. ( my first and biggest problem concerning overexertion is always not being able to fall asleep)

    so I'm baffled, happy and hopeful.:):):)
    I'll buy me another bottle of ubiquinol :lol:

    ( and be very careful not to overdo it too :balanced:)
     
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  13. Shoshana

    Shoshana Northern USA

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    That is definitely nice to hear about @Sundancer !
    Thanks for sharing your update!
     
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  14. Mary

    Mary Moderator

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    @Sundancer - I'm so glad to hear all of that! :thumbsup: Dang - that's amazing! Potassium has not prevented PEM for me, but I would be much worse off without it. After I experienced that awful fatigue after starting methylfolate, which I then knew was from low potassium, I realized I had had it off and on for several years, only never knew what it was. My potassium blood work was always in the normal range, albeit on the low side. But there was nothing to indicate a potassium deficiency, until I read Freddd's posts about methylation and low potassium. And then Richvank's post (referenced above) was the icing on the cake.


     
  15. Sundancer

    Sundancer Senior Member

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    I do not think the potassium prevents PEM, I think it's the ubiquinol. And not preventing it really, but giving me more leeway.

    I remember the first time I had potassiumshortage, I was waiting for the bottle to arrive and that waiting period coincided with bloodwork, potassium was low but in range, not even on border.

    It still goes well here. Of course I have overdone...and then had a day of very tired, but not PEM. Yesterday I friend of mine took me out to buy some plants for the backyard, that was my first outing in eh...2 years or so, my, that was much. So now I think I'm done in, but not too bad. But I do have sore throat..... so wait and rest again.

    further, yesterday I ate some salad ( I rarely eat greenery because my indigestion has troubles with it) tonight the potassium shortage peaked, cramps in calves and feet, so I emptied my potassiumdrink and it went away. So nice that I now know what it is and how to deal with. Maybe I have to reduce the amount of folate when I wanna eat salads in the evening.

    But this morning again I had that strange overdark poo. ( not so bad as the first time though) So there seems to be some relation.
    The story goes on, but hope that it will end in " she lived happily ever after" is growing.
     
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  16. Mary

    Mary Moderator

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    :thumbsup:
     
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  17. soundasacrystal

    soundasacrystal

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    @Sundancer and @Mary
    Hi! I'm jumping in late to this conversation. I just wanted to ask you both a question about your potassium deficiency symptoms. I'm recovering from the horrid flu that's been going around this year and my potassium needs seem to have skyrocketed. My question is: do either of you end up with polyurea (having to pee a lot and with greatly increased volume) when you have low potassium? Also, is your low potassium accompanied by low blood pressure?
    I'm trying to figure out if this is just CFS or if I need to be checked for something like Gitelman syndrome.
    Also, I'm very glad you're feeling better @Sundancer !
     
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  18. Mary

    Mary Moderator

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    Hi @soundasacrystal - No, I don't get those symptoms with low potassium. I primarily get severe fatigue and muscle spasms or cramps in my feet and lower legs. It also contributes to insomnia for me and if anything, my BP would go higher. Low potassium is generally associated with higher BP.

    You might check out diabetes insipidus (no relation to diabetes mellitus) which involves polyuria and also low potassium: https://www.niddk.nih.gov/health-information/kidney-disease/diabetes-insipidus
    There have been a few posts on this board about this issue, do a search at the top of the page.
     
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  19. Sundancer

    Sundancer Senior Member

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    Hi @soundasacrystal , I've had it only twice, symptoms for me are cramps, palps, constipation, general dryness ( dry skin, much thirst and thus much peeing, but not more then goes in) No idea about bloodpressure

    (btw, I did overexert and have PEM, but it is not as bad as t could have been.)
     
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