Kidney area pain?

[Patrick*]

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.

Thanks Justy. (Great Avatar, by the way). I've tested negative for Lupus several times and don't have a skin rash. My main symptoms besides the fatigue and kidney pain are shortness of breath, frequent sore throats, and swollen glands.

It's definitely not a UTI either. I've had many urine tests.

 

[Calathea]

Willow - bless you for discussing it, but as I'm in Scotland, we don't have Barnes & Noble or Nooks. It's a pity, they sound nice. A friend vaguely offered to let me play with her Kindle, perhaps even borrow it, but it doesn't seem to be happening

Going back to the kidney area thing, I'm curious to know whether anyone here who has urinary tract problems of any sort gets kidney area pain in the absence of an actual kidney problem? And if so, what sort of urinary problems are they?

 

[justy]

Thanks Justy. (Great Avatar, by the way). I've tested negative for Lupus several times and don't have a skin rash. My main symptoms besides the fatigue and kidney pain are shortness of breath, frequent sore throats, and swollen glands.

It's definitely not a UTI either. I've had many urine tests.

My Avatar is the warrior Queen Boudicca - the leader of the last british tribe to fight the Romans (thanks!) Lupus can be difficult to diagnose - tests can be negative and only 40 ish percent of sufferers have the rash. Im not trying to encourage the idea though, just trying to be informative. i also dont have a UTI- my kidney pain has been worse and often i dont get it now.
Take care, Justy.

 

[Patrick*]

My Avatar is the warrior Queen Boudicca - the leader of the last british tribe to fight the Romans (thanks!) Lupus can be difficult to diagnose - tests can be negative and only 40 ish percent of sufferers have the rash. Im not trying to encourage the idea though, just trying to be informative. i also dont have a UTI- my kidney pain has been worse and often i dont get it now.
Take care, Justy.

Interesting. How does one find out for sure if they have Lupus? (I'm almost afraid to ask, if it's anything as complicated as getting an ME diagnosis.)

 

[WillowJ]

Willow - bless you for discussing it, but as I'm in Scotland, we don't have Barnes & Noble or Nooks. It's a pity, they sound nice. A friend vaguely offered to let me play with her Kindle, perhaps even borrow it, but it doesn't seem to be happening

lol, silly willow. I saw that you were in Scotland but I didn't stop to check where B&N had or hadn't expanded to. Too used to the internet going everywhere that I forgot to think about stores still not going everywhere. :Retro smile: ty for kind words. Hopefully your friend will think to let you look at her Kindle after all...

I think I have interstitial cystitis. And I seem to get mild UTI's rather often (though, badly, I don't always go in... too much effort to go to the doc, and I'd rather not have the antibiotics unless it gets bad... I try cranberry juice or cranberry pills first).

 

[justy]

Interesting. How does one find out for sure if they have Lupus? (I'm almost afraid to ask, if it's anything as complicated as getting an ME diagnosis.)

I am afraid that you are right - diagnosing Lupus is very difficult, especially as it is possible to have it without having positive tests. there are lots of good sites for Lupus info that you can google.
This is a link to the alternative St Thomases criteria

http://www.lupus-support.org.uk/Crit.htm I fit most of the criteria here apart from all the tests which i havent had. I have had a negative ANA test, but it is possible to have lupus and not be positive on this test. For me the red flag is that i also have lung involvement in my illness and some joint pain and a couple of small swollen joints.
All the best Justy

 

[Gavman]

The kidney area pain is worse for me after sex, heavy exercise or food that doesnt agree with me. I also get pain in the chest. As we struggle with exercise, the cardiovascular system and blood flow are likely problematic and the heart and kidneys would be indicated. Which could also be a tight diaphragm. Lol, we just struggle with everything.

I think thats why CoQ10 and l-carnitine can be effective with CFS. In regards to the kidneys, learning to relax and not get overstimulated/excited would be the idea, of course i find myself struggling with varying addictions as life with CFS can be boring. When exercising, i try to relax enough that my heart doesnt beat fast, therefore the strain on my heart and subsequently kidneys is lessened.

 

[nanciswell]

FOr me kidney pain was related between the relationship of oxalate overload plus ecoli .. I had had chronic ecoli infections of my bladder.for 33 years . Often my kidneys would ache but no infection would show up. Upon going on the low oxalate protocal over a year ago , taking high dose p5p which helps the body to stop producing endogenous oxalates / the ecoli infections in my bladder stopped and my kidneys have not hurt since. I still have to take homeopathic ecoli to deal with ecoli in my gut which causes me fatigue, irritable bowel .

 

[Old Salt]

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.

I have the same complaint. An Ultra Sound of my kidneys and liver discovered (cysts) on both. Nothing malignant yet, except for a Basil Cell carcinoma below my left eye which was removed a couple of months ago. I'm 72.

 

[Old Salt]

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.

I would strongly advise to take 10,000iu of vitamin D3 per day with a substantial amount of Magnesium Citrate. Good for recurring stones as well.

 

[sianrecovery]

Thanks everyone who posted - am taking D3, and used to take heroic amounts of magnesium. Stopped on advice of a doctor who believed it contributed to biofilm infections. I still have problems with infection and kidney and bladder irritation. For a while, d mannose held it at bay. Stress definitely exacerbates it. Just did two weeks on steroids and the pain went - clearly inflammation is a big part of the picture. There are a number of schools of thought on interstial cystitis - I kind of lean to Angela Kilmartins, which sees an underlying infective component - one easily passed backwards and forwards via sexual partners.
Very interesting on the oxalate stuff - will check out.

 

[sianrecovery]

Ps Nanciswell - when you say high dose p5p, what kind of dose do yo mean? And did you do mutaflor for the E. coli?

 

[SickOfSickness]

I have kidney area pain. An ultrasound showed nothing abnormal with my kidneys.

I have two types. The first is an ache on both sides, and now I believe it is from my lower ribs. I have pain and tenderness around other parts of my ribcage too.

The occasional sharp pain I have can last for hours and days IIRC. I haven't worked out why it happens or what it could be.

 

[nanciswell]

Sian ... Sorry long time .. I found taking at least 100mg P5p helped the pain alot.. I had tried mutaflor but cannot remember at what point ? I had no changes on the mutaflor. I found help for the kidney pain also using homeopathic ecoli and also a kidney homeopathic specific for mercury in the kidneys by Kroeger Vibropathics

I am still having problems ... Still convinced the low oxalate is one of a culprits in the kidney pain.. . I have been detoxing ox for two years now .. , treating my bad intestinal tract. etc making small improvments.. hopeful . Recently I have had a chronic return to kidney pain . It got worse with another bacterial problem after taking a soil based probiotic called Prescription Assist . I also have a diseased colon and since taking the PA my colon along with my kidneys are alot worse.. There is one partiuclar fungi in the PA that is related to colon problems but have yet to research any connections to the kidneys ....

 

[sianrecovery]

Interesting Nanc, thank you. Prescript Assist, which I took after reading Ken Larssen's website, made me pretty poorly too. I never really know when that kind of effect should be tolerated and when it's a bad sign. I stopped them, anyway. When you say 'low oxalate is one of the culprits', do you mean oxalate should be raised?