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Anyone ever experience extreme kidney pain?

anncavan

Senior Member
Messages
107
Location
San Francisco, CA
For the 2nd time in 4 months I've found myself in the hospital for what everyone's sure is kidney stones. But results (bloodwork and ultrasound) are negative.

Pain starts out of nowhere at waking. If you have your hands in your waist, the pain starts where the thumbs sit on your back. It radiates about 8 inches up and down my back, around the sides, somewhat into the abdomen, and down my thighs. The pain is so extreme it causes me to throw up. Vicodin dulls some of the pain, but it's still immobilizing. All I can consume is seltzer water, Coke, Baked Lays and a little apple sauce. Nice mix!

Anyone else experience anything like this? Any ideas of cause? The 1st time I attributed it to a new antibiotic I was on for Lyme, but I'm not on antibiotics anymore.

Thanks!
Lannie
 

Min

Guest
Messages
1,387
Location
UK
You poor thing, i do hope that this can be sorted as quickly as possible for you. What other tests are you being offered?


I had the exact symptoms you describe, plus bright red urine, & it was a large kidney stone (that I was told was 'all in my head' for two years).
 
Messages
26
Hi Lannie,

I had similar issues when this disease was severely attacking my body. At the time, I had severe upper right quadrant pain, and a burning ache in my kidney areas. When they would take a urine sample it showed there was blood in my urine (sorry about TMI :), although it was microscopic and nothing visible was obvious. But, when scanning for stones I had none...and my kidney function was normal.

Come to find out after about 7 months of tests and numorous trips in the middle of the night to the hospital, my doctors finally did a simple ASO titer test. Come to find out I had a strep infection in my kidneys. After about 12 weeks of very high dose antibiotics they finally beat the infection.

Even though this may not be the same situation for you, don't give up on your search for an answer. Demand more blood work, scans, etc.

Wishing for answers and health for you!
 

citybug

Senior Member
Messages
538
Location
NY
I just had a kidney stone. Are you sure they didn't miss it? When I touch that spot it is sore, like a muscle attachment. Can you get acupuncture?
 

rlc

Senior Member
Messages
822
Hi anncaven, I agree with idhunter an infection of the kidney's sounds like the most likely cause, if they've done the right blood work and ruled out the likes of glomeruonephritis etc and ultra sounds ruled out stones, these infections are normaly found by analysing the urine. I hope they sort it out for you soon!

All the best
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Pain starts out of nowhere at waking. If you have your hands in your waist, the pain starts where the thumbs sit on your back. It radiates about 8 inches up and down my back, around the sides, somewhat into the abdomen, and down my thighs. The pain is so extreme it causes me to throw up.

I have had this, too, and passed considerable quanties of blood with large clots for several days. Finally a doctor was called, who upon being told that I had a diagnosis of ME, said , 'Oh that doesn't exist' :D and, 'your so-called kidney pain will just be a pulled muscle'. :eek: I had no idea that a pulled muscle could cause you to bleed so much! He refused to re-consider the diagnosis and persisted with it for a few weeks.

Some time later I was finally fast-tracked to hospital by another doctor and was given a diagnosis of glomerneunephritis and, in retrospect, probably kidney stones.

I hope you manage to find a knowledgeable doctor soon and receive appropriate treament.

Best wishes,

C.G.
 

anncavan

Senior Member
Messages
107
Location
San Francisco, CA
Thanks so much everyone! For all the ideas! I'm getting a CBC, CMP and a complete Urine anslysis tomorrow. I have the form and have no problem checking more boxes and squaring up w my doc on Monday. Anyone know what other tests I should be doing to cover my bases?

ASO titer test - would that be "6250 antibody screen w/reflex to ID/titer"?

How is glomerneunephritis diagnosed?

Thanks!!!
 
Messages
35
Location
Western Australia
I suffer, not what I'd call pain, but an uncomfortable pressure where my kidneys lie, especially on my right side.
Four months ago I had an abdominal ultrasound and discovered I have a 9mm hyperechoic mass in my left kidney. It was recommended I have a CT scan; I refused as I don't like the thought of having a big dose if ionising radiation.
Anyway my I had a another abdominal ultrasound around one week ago and it showed I had another hyperechoic focus this time around 4mm is size, also in my left kidney. My GP has referred my to a kidney specialist for further testing. It is suspected the "lumps" are angiomyolipomas.
I think it is odd that I feel pressure on my right kideny and not on my left, where the masses are.
 
Messages
26
An ASO Titer test is a simple blood test to look for Strep in you bloodstream. ASO means "Antistreptolysin O." It is scary to think that my nephrologist was days away from ordering a kidney biopsy! They started to think I had glomerulonephritis or lupus nephritis, but thankfully they found the strep. I would suggest that if you are still not getting any answers, to get an appt. with a Nephrologist asap. They can order more thorough tests and hopefully find some relief for you.
 

anncavan

Senior Member
Messages
107
Location
San Francisco, CA
Thanks everyone. I did bloodwork this morning. CBC, CMP, UA, Urine culture, lipase and amylase. the last 2 were to test for pancreatitis. Of course, Antistreptolysin O! I should have known that! I'll see what these come back as on Tuesday and go from there. Since this is the second time now, I definately want some answers. And I will start hunting down specialists.

Pain subsided today. But I'm just horribly nauseaus. Not sure if it's from the inflammation/kidney stuff or the Vicodin. I wasn't able to really eat anything, and then taking Vicodin. So of course started throwing up this morning. But pretty sure it was just from the drugs. It shouldn't be in my system anymore as it's been 12 hours now though. And the directions are to take every 4. But can still barely think of food.

Well, the mystery will have to continue for a few days. Thanks everyone for the suggestions, and shared experiences!

Lannie
 

rlc

Senior Member
Messages
822
Best of luck, hope the tests show whats going on, if not find a good nephrologist, heres information on vicodin it say's make sure you tell a doctor if you have kidney problems, and in the side effects link at the bottom of the page it says renal side effects are rare but possible. So it might be worth getting them to investigate if it is the right medication for you at the moment link here http://www.drugs.com/cons/vicodin.html

All the best
 

citybug

Senior Member
Messages
538
Location
NY
A friend dislodged his kidney stone by throwing up on vicodin. I'm glad you are getting the tests. In the meanwhile a book by an Indian healer, Sree Chakravarti recommends one tsp of ginger powder mixed with any food once a day for nephritis. Who knows maybe it could help till the tests come back.
She had a lot of success with kidneys and also recommends: no red meat, at least 8 glasses of water a day, watermelon and cucumber juice, avoid tea and coffee (and caffeine), avoid raw tomatoes, raw onions, and cooked spinach, also strongly advises drinking the water in which kulthi grain has been soaked. (common there, maybe an indian grocery would have it).
 

anncavan

Senior Member
Messages
107
Location
San Francisco, CA
Hi everyone! Thanks for all of your suggestions and well wishes. I am feeling much better, and wanted to report back on the findings.

Quick summary. I was feeling better than I'd felt in a while, and suddenly woke with extreme pain in both kidneys (if you put your hands on your waist, it's where your thumbs sit). The pain was so severe I was throwing up, could not walk, sit up, or lay flat. I had to be curled in the fetal position with a heating pad on my back at all times. All I could eat were baked lays and coke (weird, i know).

I was sent for an ultrasound, it was clean. I had labs run. No infection. I had a CT of my abdoment. That was clean too. However, looking back at my old bloodwork, my Creatinine level is alwasy 0.6. (Note normal is 0.6-1.0) Two days before the pain, it had dropped even lower to 0.56. The morning and evenings after the pain started, my Creatinine results jumped to 1.5 and 1.6. In some people, these are normal levels, but since historially I have always been low, this showed an inflammation in my kidneys.

I spoke to Dr. Lerner, my CFS doctor, and THE most experienced doctor in treating CFS with antivirals(decades). He takes incidents like this very seriously and had every test run to be sure all possibilities were ruled out. Once the results were in he confirmed this was a kidney irritation caused by Valtrex. Valtrex can cause kidney stones and/or kidney irritation. Whenever he prescribes it, he requires you drink at least 6 x 8oz glasses of water a day. I thougth I had been, but must not. My Valtrex prescription(for EBV) has now been replaced with Famvir(generic as my insurance wouldn't cover brand) at the same dose of 1 gm x 4.

I've come around now. Starting to feel better again. It took about a week, but getting back to "normal" just in time for holiday madness :)

Hope this finds you all well!
Lannie