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Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Snow Leopard, Sep 24, 2013.

  1. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    I occasionally exercise *shock horror* ;)

    I have noticed however that whenever I do a reasonable level of exercise (that 98% of the population would take for granted), that my urine is dark with a brownish tinge. Not nearly as dark as the image on Wikipedia, but heading in that direction:

    The colour is likely due to a breakdown of muscle products. I am wondering if this is common among people with ME or CFS?
    Hutan, Mel9 and nandixon like this.
  2. Valentijn

    Valentijn Senior Member

    I always have trace amounts of blood in my urine, since I got sick. No idea if it would get more noticeable if I were to push my limits. I assumed mine was due to chronic inflammation.
  3. xchocoholic

    xchocoholic Senior Member

    I've had trace amounts of blood in my urine since getting this illness too. After getting
    a kidney stone that was too big to pass I decided this was probably from passing tiny stones on
    a regular basis. I have a leaky gut and oxalate problems so it made sense. I didn't realize
    this was a marker for chronic inflammation.

    On the dark urine, mine is dark unless I drink lots and lots of water.
    Mel9 likes this.
  4. Ruthie24

    Ruthie24 Senior Member

    New Mexico, USA
    Having seen patients with rhabdo, I kind of dismissed this when I first read it, but on further reflection I am wondering if you aren't on to something. Maybe a mild form of rhabdo from muscle breakdown occurs?

    This summer when I was doing better and was quite active and pushing exercise, even though I was drinking a lot and getting IV saline regularly, my urine was always very dark. Now that I've relapsed and am mostly back in bed, I'm not able to drink as much, have stopped the saline and my urine is light and clear.
    Mel9 likes this.
  5. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    Hutan likes this.
  6. Marco

    Marco Grrrrrrr!

    Near Cognac, France
  7. Marco

    Marco Grrrrrrr!

    Near Cognac, France
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    When I have over-exerted I get what appears to be osmotic diuresis, followed by apparent symptoms of mineral deficiency. I had an unusually-bad episode in the past week, which gave me a very bad night as I was having to get up so frequently, and passing a lot of urine so getting dehydrated. It is part of my PEM, and the urine is definitely more concentrated than usual, sometimes a bit cloudy, but not brown, although I had that once or twice in the early stages.

    The two episodes of severe hyponatraemia I have had were probably a result of repeated over-exertion.
  9. eastcoast12

    eastcoast12 Senior Member

    Long Island ny
    What's up snow leapord. I guess I can claim I'm some sort of expert when it comes to rhabdo. About three years ago I happened to get it 5 times which I needed to admitted each time.

    So most rhabdo is caused by over exertion. Like you I wasn't exerting myself anymore then I have done in the past. That year happened to correspond with a number of sever infections I had. Different viral infections can play a role in developing rhabdo. I'm inly speculating here but many of us have had pretty severe infections so there could b a possibility. It would b interesting to see if there was a higher prevalence of rhabdo in the cfs community.
    Last thing, which is the most important, is that this is an extremely dangerous situation. Think of your kidneys as a mesh screen. Most muscular byproducts are easily filtered. During rhabdo the muscular byproducts such as myoglobin are to big to pass through. This can lead to complete kidney shutdown and dialysis.
    Also when you get rhadbo the injured area becomes swollen with body fluids. This can lead to the constriction of blood vessels which in turn could cause the death of tissue from the lack of oxygen. This is called compartment syndrome. Then they have to perform a fasciotomy (look it up, it's nuts)
    Moral of the story, if you think you have rhabdo get your ass to the emergency room. Simple blood or urine test can confirm a diagnosis.
    If you have any questions let me know. Drink a shitload of water!!
    Hutan, Mel9 and Snow Leopard like this.
  10. anciendaze

    anciendaze Senior Member

    I want to add my weight to the advice in the above post. If rhabdomyolysis is actually taking place it is extremely damaging to kidneys. What is more we have a number of reports about people with ME who have died indicating kidney failure played a role. Typically this is blamed on patients becoming dehydrated due to "bizarre illness beliefs". Drinking enough water to cope can also be classified as psychogenic polydipsia. (Another example where patients can't win.)

    If there are tests showing those byproducts in urine, the whole clinical diagnostic and treatment picture changes. Doctors will pay attention.

    A friend with an entirely different disease, hypokalemic period paralysis, has experienced this after he became paralyzed while out cycling. He did not need to experience physical trauma, simply lying without being able to redistribute weight was enough. In this it resembled "crush syndrome". This also happens among the elderly who spend time lying on hard floors after a fall.

    I certainly hope this is rare among ME/CFS patients, because it is no laughing matter.

    You might also check on Chronic Exertional Compartment Syndrome.
    JaimeS, Hutan, Valentijn and 2 others like this.
  11. nandixon

    nandixon Senior Member

    I have this same problem, which is definitely not related to dehydration. And likewise mine is not as dark as in the photo; perhaps half that intensity of brownish color at its worst.

    It think it started maybe about 12 or so years into what has been roughly an 18 year illness.

    I think in my case this is almost certainly some form of mitochondrial impairment the ME/CFS is causing, and essentially resembling a mild mitochondrial disease (myopathy).
    Hutan and Mel9 like this.
  12. wastwater

    wastwater Senior Member

    Was going to post about this,but I'll just give it a bump as it's already been covered
    Hutan and Mel9 like this.
  13. pogoman

    pogoman Senior Member

    Haven't been posting for awhile as I've been working on getting better while being treated for my myopathy.
    But I check back once in awhile and saw this thread so I'll toss in some of my experience.

    I have whats known as necrotizing autoimmune myopathy, can be caused by statins, fibrates and unknown.
    I don't think my disease ever progressed to causing rhabdomyolysis (which it can) but if someone has had rhabdomyolysis along with muscle pain and fatigue they should have it checked out.

    Anybody that has had rhabdomyolysis should have a blood CPK ( creatine kinase) to determine muscle damage.
    Other tests for inflammation and muscle damage can determine if its inflammatory (autoimmune) or not.

    The joker in the deck is the newish necrotizing autoimmune myopathies are autoimmune but without the usual inflammation present.
    Its considered one of the "toxic" myopathies, usually caused by drugs or chemicals.
    Its becoming evident that a larger amount of people have adverse effects to lipid lowering drugs that do not end after stopping the drugs.

    It took a couple of electromyogram tests, a muscle biopsy and change in neurologists before I was started on autoimmune treatments.
    I've also tested way over normal for aldolase which shows muscle damage.

    After 10 months of IVIG treatment which ended in September I had improved symptoms but CPK did not drop.
    I started on low dose methotrexate in late July and have slowly been improving since.
    Aldolase dropped almost to normal and CPK dropped about a hundred points three months after starting.
    I also take the B vitamins, mfolate, coq10 and branch chain amino acids that help.

    The University of Washington at St Louis Neuromuscular page is a good source of further information, they've just recently updated the myopathy pages.
    They are one of the top research universities in the US
    The fibrate caused myopathy section (I was on fibrates for 8ish years) show reduced fatty acid and branch chain amino acids oxidation and reduced CPT activity resulting from that disease.
    Rhab section
    Hutan likes this.
  14. Sea

    Sea Senior Member

    NSW Australia
    We have had discussions in other threads but it's probably relevant to add to this thread too that there are primary genetic causes for exercise or illness induced rhabdomyolysis. Fatty Acid Oxidation Disorders - MCADD, LCHAD, VLCAD, CPT1 and CPT2.
    Hutan, Valentijn and Snow Leopard like this.
  15. Hutan

    Hutan Senior Member

    New Zealand
    I `saw @JaimeS's post elsewhere on rhabdomyolysis. It would be very interesting to have more information on the prevalence of this in people with ME symptoms. @charles shepherd, is this something you see?

    My urine is intermittently, but fairly frequently, brown (different to the concentrated yellow of dehydration). I think it occurs most often when I have been pushing myself physically.
    nandixon and Valentijn like this.
  16. JaimeS

    JaimeS Senior Member

    Silicon Valley, CA
    Ditto @Hutan -- much more common early in the illness, happens after I push. This (says Wikipedia, for what that's worth), can be a sign of mitochondrial dysfunction.
    Hutan likes this.

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