1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

Kidney area pain?

Discussion in 'Gastrointestinal and Urinary' started by PWCalvin, Dec 30, 2011.

  1. Patrick*

    Patrick* Formerly PWCalvin

    Messages:
    220
    Likes:
    162
    California
    In all my travels across the ME/CFS web world, there's one symptom I never read about...and it happens to be my 2nd or 3rd biggest symptom: kidney area pain. It makes me wonder if this is a clue to my specific ME etiology.

    "Pain" really isn't an accurate description. It's more like a feeling of swelling or discomfort, and it's a barometer for my fatigue in general. When it flares up, so does my fatigue. I have no idea if it's actually my kidneys, but it's just below the rib cage, on both sides, toward the back. I suppose it could be the liver, as I believe part of the liver extends to the left side.

    I've had standard tests of liver and kidney function, and both were normal (other than high bilirubin). A recent blood test showed that I have reactivated mycoplasma infection. I've read that mycoplasma can attack different organs.

    Does anybody have any insight into this? Has anyone else experienced this? I don't like having one symptoms that nobody else has.
     
  2. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    104
    England
    Is it after a few hours sleep?
     
  3. alex3619

    alex3619 Senior Member

    Messages:
    7,721
    Likes:
    12,621
    Logan, Queensland, Australia
    HI PWCalvin, I have had this for the last year - which means I didn't have it for the first several decades. Sometimes it is after sleep, but it can be any time too, and is often just a feeling of pressure. So you are not alone, but I don't know what it is either. I am not really mobile enough to get it properly investigated either. Bye, Alex
     
  4. Patrick*

    Patrick* Formerly PWCalvin

    Messages:
    220
    Likes:
    162
    California
    Yes, as a matter of fact, I have often noticed that it is worse in the morning after waking. But not always.
     
  5. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    104
    England
    Thats the most common time I get it, in fact it will wake me up most mornings for months on end when its a problem, I've done a few googles on it and it's not an ME specific issue, although what it is seems rather inconclusive (based on my searches) but I've gained most relief from assuming it's a postural problem while sleeping. Keeping arms below shoulder height and the hips at right angles to the spine when lying down seems to reduce it significantly, and the associated (at least in my case) extreme trunk stiffness in the morning as well.

    Doesnt get rid of it, but it does reduce it to manageable levels, been getting it whenever i spend a lot of time inactive or lying down for the last 15 years or so. Like you I was concerned it was a kidney issue but given the size of the affected area it doesnt seem likely.

    edit - oddly I've also recently noticed an association between eating certain types of food in the evenign and it occuring, which isnt to say it wont if i dont but if I do it's a virtual certainty, still workign on that one but one of the main culprits seems to be fruits like apples etc.
     
  6. justy

    justy Senior Member

    Messages:
    2,738
    Likes:
    3,076
    U.K
    Hi, i have had this for years after waking also. Mine is a small area in the back where the kidneys are. I also get ankle swelling on both sides in the last couple of years. Kidney involvement is common in Lupus - which can have similar symptoms to M.E. I am going to get mine checked out in Jan with my GP as im beginning to wonder if i might have Lupus not M.E. What are your other main symptoms?
    Justy.
     
  7. sianrecovery

    sianrecovery Senior Member

    Messages:
    709
    Likes:
    408
    Manchester UK
    Hi Everyone

    Kidney pain is also an issue for me. Partly this is because I have a genetic disorder called Meduallary Sponge Kidney, which means my kidneys are calcifying, and I have many kidney stones. However, the kidney pain is also intimately linked to my experience of ME, and energy fluctuations, and a number of other symptoms. The MSK probably helped predicate me for ME, but they are certainly not identical, as I know from comparing my symptoms to others who just have MSK. I saw an environmental doctor called Dr Freed, who has sadly since died, and he examined me and said he thought I had soft tissue rhematism in the area around my kidneys, not from the MSK, but from environmental toxicity which my ME made me bad at metabolising. I think with my kidneys there is an on-going issue with inflamation. In chinese medicine, the kidneys are often regarded as one of the fundamental systems producing chi. In terms of managing pain, Ray Perrin suggested to me to put a cold pack on my mid spine for five minutes - the bit just above the kidneys, and I find it helps. I also find self care in terms of massaging and stretching the area itself helpful. Its worsened since I began Rich's protocol, as it did when I began Perrin technique, so maybe there's something in there about the release of toxins? I drink shedloads of water too. Soem yoga stretches also help.
    It makes sense to me, given our systemic issues with metabolism, that our kidneys would also be involved. One thing I would say is that if you suspect an infection, act on it quickly and get your urine tested, because if you leave it, and I have in the past, mistaking one set of symptoms for another, you can end up with long term damage that cant easily be reversed.
     
  8. Min

    Min Senior Member

    Messages:
    1,304
    Likes:
    1,626
    UK
    mine turned out to be a huge kidney stone - having of course been told that it was 'all in my head' for years
     
  9. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    If there's any kind of muscular tension/spasm going on, the Miracle Ball Method is worth a shot. It's a daft name, it's just a grapefruit-sized medium soft ball that you place under your back to lie on (or two, but I never got on with using two, plus my neighbour borrowed the other ball and the book that comes with them and then vanished) while doing deep breathing. The idea is that it relaxes the muscles around it, and I find the easiest thing to do is to put it under one part of my back, breathe deeply for a minute, wriggle down a bit so that it's a little higher up my back, rinse and repeat until it's at my neck. It's probably the best thing I've found for back pain, and unlike something like a massage, you can do it in your home and it's a one-off charge so you can afford to do it every day. As well as standard back pain, I've used it to help unknot things a bit when I have migraine and also when I have attacks of calcific tendinitis in a shoulder and everything has ended up a bit wonky.
     
  10. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,711
    Likes:
    10,212
    Amersfoort, Netherlands
    So it relaxes muscles AND makes dodgy neighbors disappear?!? Is there anything it can't do? ;)
     
  11. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    If it could magically expand in such a way that it could lift me back up off the floor afterwards, that'd be pretty nifty.
     
  12. Tony Mach

    Tony Mach Show me the evidence.

    Messages:
    146
    Likes:
    34
    Upper Palatinate, Bavaria
    I had these kinds of pain. They went away after I started eating Paleo (similar to what Terry Wahls does for her MS).

    Was never able to find out what it was (medical "science" seems not to recognize this kind of pain as caused by a bodily problem and puts it away under "somatform disorder" or something), it is unlikely that it was the kidneys (kidney pain is felt in different areas). I suspect it were the adrenals, but I could be wrong.

    -----

    Just a very very very short overview of the Paleo diet, things that usually are OK for all people to eat:
    - Fresh Meat, Fish
    - Fruits
    - Greens
    - All kinds of tubers (but not white potatoes), yams, (real) sweat potatoe, plantains,

    Things that can cause problems for some people:
    - Processed meat
    - All grains, even if gluten free
    - Milk, and to a lesser extent cheese
    - Hydrogenated fat and vegetable oils like canola
    - Artificial ingredients
    - Night shades like white potatoes, peppers, tomatoes

    And to a lesser extent this can be problematic if overdone:
    - Eggs
    - Nuts
     
  13. sianrecovery

    sianrecovery Senior Member

    Messages:
    709
    Likes:
    408
    Manchester UK
    Yep, January the 1st, maybe I need to get back on the horse with my diet. Calathea - those miracle balls sound like a great idea, how hard do they need to be? Is there an easy way to buy them?
     
  14. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    They're not that hard, and they're very easy to buy, just look on Amazon. I heard about them from another ME forum. That said, I've just had a quick look on Amazon and apparently a lot of people complain that the plasticky smell bothers them, so that's the one thing to bear in mind if it's likely to trouble you. I don't remember it being a problem for me, but I'm not as chemically sensitive as some people here. The neighbour who ran off with the other ball was using it for chronic headaches, by the way.
     
  15. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    Wandering slightly off-topic here, but I ended up reading some of the Amazon reviews for those balls and one recommended a book called Get Fit In Bed. It looks rather promising. What do people think?
     
  16. hurtingallthetimet

    hurtingallthetimet Senior Member

    Messages:
    612
    Likes:
    115
    i hurt everywhere all the time so its so hard to tell when something else is going on..

    if you havent {sorry im in pain and fatigue havent read every post} but if you havent seen a doctor you should to rule out uti...i dont know as much as most that have posted it seems so hopefully you will get some great info that will help you out...

    i hopt that you are feeling better take care
     
  17. sianrecovery

    sianrecovery Senior Member

    Messages:
    709
    Likes:
    408
    Manchester UK
    Get fit in bed! sounds more promising than all the damn pills I'm swallowing!

    Good tip on the MCS stuff- I do suffer from that - everything plastic I buy I have resigned myself to a long period of banishment for them to little used room with an open window. I'm going to try the miracle balls, have long terms issues with my spine, so anything that promises to reduce some of the muscular tension sounds great. Thanks for the tip xxxx
     
  18. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    Let me know how you get on with them. Apparently some people put them in a sock to reduce the smell. If I ever end up having two to use again, I might try putting them in a stocking or something to keep them close together, because the main problem when I tried using two before was that they'd roll off in different directions and I couldn't hang on to both at once. Anyway, you need to be relatively comfortable lying on the floor. I lie on a rug, and since I lost weight and somehow managed to lose it all off my bottom, I put a small cushion under my tailbone. I spent ages on the ball last night as I'm having a persistent menstrual migraine this month, instead of my usual 5-10 min, so I put on an audiobook and took the electric heated throw/blanket onto the floor with me. I'm definitely doing that again, it's simply getting too chilly for lying on the floor otherwise.

    Maybe we should start a separate thread on gentle ways of stretching, or exercising lying down? (Apart from the obvious, which incidentally is great for keeping back pain at bay when I have the energy for it.) I could do a more detailed review of the miracle balls, for starters. If nothing else, I am starting to feel as if we have hijacked this thread.

    I'm probably going to get that book some time. As far as I can tell, some of the main problems with exercise are:

    1) Sensory overload from noise etc. outside the home amplifying the exhaustion.
    2) Getting your heart rate up.
    3) Having to change levels from sitting to standing etc., and being at some levels in particular e.g. not being able to exercise standing up. I really loathe having to get onto the floor and crawl back up again.
    4) Getting chilly.
    5) If you do try to exercise in bed, many exercises just don't work because it's not a solid firm surface.

    Exercising in bed sounds like a good way to get past those problems, and the book has rave reviews both from elderly folks and people with fibro. Even if I only find a few good stretches, that'd be something. I'm not at a stage where I'd be up to half-hour workouts anyway! Although I believe the workout is only 15-20 min and you are encouraged to do it in small bits or skip most of it or whatever works for you, so it does sound ME-friendly. My partner is thinking of getting me a Kindle for my birthday, if we can work out whether my eyes would get on with it, so I think I'll wait until we have that sorted out and then get the Kindle edition.

    Going back to the actual purpose of this thread, kidney-area pain, someone mentioned being checked for UTIs. I don't think you feel those in your kidneys, I believe you feel UTIs in your bladder and kidney infections in your kidneys, but one can turn into the other, and it's probably worth checking to be on the safe side. If you're getting bladder-related symptoms but don't test positive for UTIs, look into Interstitial Cystitis, it's common in ME sufferers. Although I don't recall it ever involving back pain in my case, just lots of charming bladder symptoms and countless urine tests coming back negative for bacterial infection, and then some seriously entertaining tests with the urogynaecologist and eventually a diagnosis from a gynae who had her head screwed on.
     
  19. WillowJ

    WillowJ Senior Member

    Messages:
    3,142
    Likes:
    2,839
    WA, USA
    interesting. I get random kidney-area pains, particularly on the left side, and swelling. Often it's as much or more on the side, than near my kidney. My kidneys are fine, other than a tendency to make stones. Liver is fine, too. I have been unable to determine what it is.

    My doctor has been no help (thinks it's likely muscular, as "there is nothing there" as far as organs likely to be inflamed; I am not convinced of this explanation, as usually if I pulled a muscle it would feel tight, not loose and puffy). Maybe that was one of my old, patronizing docs, tho (or maybe my last caring but inexperienced doc who moved away). I should ask new doc, next time it happens.

    regarding e-readers, my sister looked into them and decided to get a Nook. Something about the battery being able to be replaced more easily and cheaply than Kindle, and the e-ink of the first version of Nook being easy to look at (and visible in various lightings, including outdoors). Not sure if that holds for the Nook Color. Either kind of e-reader you will be limited in who you can buy e-books from (Amazon or Barnes and Noble; you might also check your local library to see if they have an agreement with a particular vendor to loan e-books). I have relatively mild difficulties with computer screens and find the Nook very easy to look at. I haven't tried a Kindle, that I can recall. But you might check both Nook and Kindle, if you haven't yet, before settling on Kindle.
     
  20. Patrick*

    Patrick* Formerly PWCalvin

    Messages:
    220
    Likes:
    162
    California
    I was thinking it might be the adrenals too, since they sit right atop the kidneys, but my recent blood tests showed my adrenals are one of the few glands functioning normally.

    BTW, I'm on a diet similar to the Paleo diet. It seems to be helping.
     

See more popular forum discussions.

Share This Page