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Widespread pain and altered renal function in ME/CFS patients.

Discussion in 'Latest ME/CFS Research' started by Snow Leopard, Jul 10, 2016.

  1. Snow Leopard

    Snow Leopard Hibernating

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    https://www.researchgate.net/public..._and_altered_renal_function_in_MECFS_patients

    Article · July 2016
    DOI: 10.1080/21641846.2016.1207400
    Neil R Mcgregor, Christopher W Armstrong, Donald P Lewis, Henry l Butt,
    Paul R Gooley

    No further details yet, I don't even know what journal it is published in at the moment...
     
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  2. JaimeS

    JaimeS Senior Member

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    Very interesting. I had some odd kidney function stuff at the start of illness, and high urine output volume (max is supposed to be 2-L/day).

    It suddenly occurred to me to wonder if we aren't peeing out glucose we can't use, which osmotically increases our urine output, which decreases our blood volume, which causes our OI.

    -J
     
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  3. alex3619

    alex3619 Senior Member

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    When I was in a hospital, looking at my urine output, an astonished nurse: "you aren't a horse!'. I didn't have the gumption to ask for another bottle as I was not done. 2L per day would mean I was dehydrated.
     
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  4. Sean

    Sean Senior Member

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    I have measured my urine output a few times over the years, and it is at least 2 litres a day.
     
    Last edited: Jul 12, 2016
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  5. Richard7

    Richard7 Senior Member

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    About six months in I did a 24 hr urine test.

    The day before I started they gave me two 4 litre containers, I had to go back in the afternoon for another two. All up it would not have been quite 16 litres as I was not filling them to the very top (that would require incredible bladder control) but maybe 14 or something like that.

    I had chronic migraine as well and was told at the time that this sort of thing was not uncommon with chronic migraine.

    @JaimeS That would be diabetes milletus. I gather most of us who have this problem have diabetes insipidus.
     
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  6. JaimeS

    JaimeS Senior Member

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    You're right, @Richard7 -- maybe the pituitary giving up the ghost (i.e. not releasing enough ADH), since hypopituitarism is often seen in ME and CFS. Could be an HPA axis issue, where hypothalamus is not 'communicating' with pituitary clearly, so you get function in stops and starts.

    I love the assumption that these people must be tired because they get up to pee. No, you morons, it's because having low blood volume means less efficient everything. (Le sigh).

    Super-rare, too. :rolleyes: Everything's rare if you don't test for it.

    When I was first ill, it seemed every autonomic and endocrine problem one could have, I had. I had raging thirst with lots of peeing for a few days and then the symptom would go away. Happened a few times before that symptom departed for good...

    -J
     
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  7. roller

    roller wiggle jiggle

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    as a child i didnt have to pee for days. this was well noticed by the environment as my friends of course (as normal for children) needed all the time to the toilet. i dont remember any times of frequent/highvolume urination at all. at least the first 10 years were extreme urinary retention only.
    the bladder was full, but even then there was no (natural) pressure to see the loo, i could wait a few days... as a baby, i wouldnt wet the diapers at night.

    sometime, with menstruation it changed: there are phases with extreme urinary retention followed by hyperurination (frequent and with high volumes, in no relation to the liquid consumed).
    i read, this may be normal in women. not sure, if its that excessive for everyone.

    this period of frequent urination started (always) the day i got my menstruation.
    and with this, i came back to life again.
    that i had to get up at night is relatively new, perhaps from 40 on, i dont know.

    despite all treatment, i still have these cycles. but not that lasting and severe anymore.
    my kidney pain (as if they would burst) is gone so far.

    i
     
  8. roller

    roller wiggle jiggle

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    and beer - hyper-urination in some ppl.
    other alcohol not really.
    is it the hops?
     
  9. ryan31337

    ryan31337 Senior Member

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    Jeez. And there I was all proud of myself for almost brimming a 5L jug :thumbdown:
     
  10. rosie26

    rosie26 Senior Member

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    I still get this symptom but not as frequent now where there is increased need to pee. I'd love to know what shifts and changes in my ME causes it. I got it more often in my severe years. I had it about a week ago for about a 24hr period. Quite a distinctive symptom that you get familiar with. I am used to this as one of my symptoms of ME, it's a very noticeable change in function.
     
  11. taniaaust1

    taniaaust1 Senior Member

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    I noticed for quite a while now, that the more unwell I are with the ME the more Im thirsty and needing to drink and pee. It certainly does go hand in hand for me and when Im very bad with my POTS, my kidney tests can come back to show they are struggling (dr told me to drink even more).

    Good to see these aussie researchers still at it.
     
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  12. JaimeS

    JaimeS Senior Member

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    ANS / HPA very screwed up. At this point I don't get thirsty at all anymore, and just literally tick off how much water I've drank in the day. Otherwise I drink nada.

    I only notice it when my mouth is dry.
     
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  13. mango

    mango Senior Member

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    Widespread pain and altered renal function in ME/CFS patients

    Neil R. McGregor a*, Christopher W. Armstrong b, Donald P. Lewis c, Henry L. Butt d & Paul R. Gooley b

    Author affiliations

    a Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Parkville, Australia
    b Department of Biochemistry and Molecular Biology, Bio21 Molecular Science and Biochemistry Institute, Parkville, Australia
    c CFS Discovery, Donvale Medical Centre, Donvale, Australiad Bioscreen (Aust) Pty Ltd, Yarraville, Australia

    Fatigue: Biomedicine, Health & Behavior Volume 4, Issue 3, 2016 pages 132-145
    Received: 24 Apr 2016. Accepted: 24 Jun 2016. Published online: 29 Jul 2016.
    DOI: 10.1080/21641846.2016.1207400

    ABSTRACT


    Background: Widespread pain is noted in many patients with chronic fatigue syndrome (ME/CFS), fibromyalgia and temporomandibular disorders. These conditions usually start as a localized condition and spread to a widespread pain condition with increasing illness duration.

    Purpose: To aim was to assess the changes in biochemistry associated with pain expression and alterations in renal function.

    Methods: Forty-seven ME/CFS patients and age/sex-matched controls had a clinical examination, completed questionnaires, standard serum biochemistry, glucose tolerance tests and serum and urine metabolomes in an observational study.

    Results: Increases in pain distribution were associated with reductions in serum essential amino acids, urea, serum sodium and increases in serum glucose and the 24-hour urine volume; however the biochemistry was different for each pain area. Regression modelling revealed potential acetylation and methylation defects in the pain subjects.

    Conclusions: These findings confirm and extend our earlier findings. These changes appear consistent with repeated minor inflammatory-mediated alterations in kidney function resulting in essential amino acid deprivation and inhibition of protein synthesis and genetic translation within tissues.

    Keywords: Fatigue syndrome, chronic, fibromyalgia, kidney concentrating ability, facial pain, acetylation, betaine

    http://www.tandfonline.com/doi/abs/10.1080/21641846.2016.1207400?journalCode=rftg20
     
    Last edited: Jul 31, 2016
  14. JaimeS

    JaimeS Senior Member

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    Authors just sent me this one thru Research Gate. I will check it out soon.
     
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  15. Flash of Hope

    Flash of Hope

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    +1

    I'm constantly around 6.5-7.5l/day. I take extra salt for 7g/day. Normally when I tell doctors I take extra salt they look me in weird way and when the discussion goes to urine output they quickly tell me its the extra salt which causes this. And when I tell them before I started taking salt my urine output was higher (didn't measure then), but they don't believe.

    Second weirdness is loss of potassium which I take supplemental 2g/day. I have very good endocrinologist who contemplates carefully and so far he can't explain where all the potassium is going. If I understand correctly, salt should increase potassium retention, but lose potassium too.

    But Its all mental, at least that what public health care think for me. Tho there is list of measurable and so far unexplained symptoms, which they like to ignore as they don't fit to their all metal picture.
     
  16. Snow Leopard

    Snow Leopard Hibernating

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    I've had a look at the study, it's not that exciting to be honest, beyond potential associations with diabetes insipidus in some patients.
     
  17. PennyIA

    PennyIA Senior Member

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    I definitely have high urine output and high frequency. Was relating it to becoming middle aged.

    Though I remember the last time I was getting scanned for a Pulmonary Embolism - and they wouldn't let me use the toilet and instead insisted I use a bed pan. Ummm.. yeah... couldn't stop the stream it was URGENT - and overflowed down the bedding onto the floor ... full bed pan. Bet the regretted that decision. I did try to warn them.
     
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  18. mango

    mango Senior Member

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  19. Sing

    Sing Senior Member

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    I have had high thirst and urine output for 30 years. I drink at least a gallon plus a quart of water per day, as well as additional bevereges like soy milk. Too much inertia to dig through my medical file to get the amount of urine in 24 hrs. Tested twice over these years. It was called "Partial Central Diabetes Inspidus" because it wasn't the typical kind. This 24 hr test seems to be one of the few standard tests which will reveal this particular ME/CFS symptom, but then even then they may not know how to interpret it, treat it or what to relate it to since they know nothing about ME/CFS. I speak of the majority of doctors and all that I have ever seen.

    This is another point--maybe peeing brought it up-- but I feel like saying that I am tired of the whole medical system. It is so exhausting, expensive and almost entirely useless for someone with ME/CFS. I have gleaned a few medicines and supplements which do help. These, my standard kit, I use daily and consider myself to have a good regimen. It took years of trial and error to find the few things that help without excessive side effects.

    Once in a while I get motivated to try something new or go to a new health care provider. These are almost always energy-taxing disappointments but I may learn a little more. I also try to educate them a bit. My attitude overall varies from negative, to positive acceptance to hopeful. Mostly I feel, "For now they don't have anything for me. It is better to make peace with this situation and live as well as I can within the bounds of what I have."
     
  20. Chelby

    Chelby

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    I consulted with Dr Neil McGregor the author of this paper. He said this SNP was the sole cause of ALL my symptoms (constant migraine, fainting, fatigue, widespread body pain, sensory overload etc).

    This is the study that he linked with the SNP I have in the NF-Kappa- β inhibitory protein α. I have read the letter and this paper a million times, but I don't really understand what it means.

    @JaimeS Would love if you could have a look at this short letter and translate it into english?

    The treatment he recommended was BCAA's 2x a day and a high protein diet.
     

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