My daughter, 23, has had kidney pain for over 10 years. She has been to many doctors. Please excuse the fact that I dont know all the proper names for all the tests and such, but she has had blood tests, ultrasounds, live CT/X-ray thing to check urinary tract functions, something where they filled her bladder up with fluids for some flow check, etc., etc.
She doesn't always tell me things, but she talks to her mom and then I hear about it. My daughter is tired of the same tests over and over. I am tired of seeing her in pain all the time.
She just had a blood panel done and everything is in normal ranges. Kidney and liver were normal.
I was hoping someone out there may have some insight or information about what else may be causing her to have so much pain so often.
Thank you for taking the time to hear me out.
Concerned Dad
Hi, Matthew -- Well, given that all the kidney tests seem to be coming back normal, let's go back to the beginning. . . what exactly made you (or she) think your daughter's pain is "kidney pain"? Where exactly is the pain? What does it feel like? Is it chronic, or intermittent? If intermittent, does anything seem to trigger it?
Also, there are kidney-related problems that are not kidney disease, and aren't reflected in such levels as eGFR and BUN. I'm guessing the doctors did check for this and ruled it out (and her pain would be absolutely excruciating), but did they consider kidney stones? Also, did they consider a kidney infection? (They usually would test for blood, pus, and bacteria in the urine and/or do a urine culture, to see what kind of bacteria are in the urine.)
Matthew, I was going to suggest exactly the same thing as 'chris62384' - kidney stones. Is her pain intermittent or relentless? If the former, it could well be that she is making the stones and they are dispersing by the time of the scans etc. Does she drink plenty of water - essential normally for all of us but especially where kidney stones are concerned. A slice of lemon added can help. Otherwise, it seems that they have been thorough with the scans etc so it doesn't look much like kidney disease per se. Has she got any other symptoms?
Matthew:
Ditto per the other 2 responders!! If all of her panels are coming up "negative" then she needs to get a hold of a diagnostician (Internal Medicine) who can hone in on all symptoms. I would think that if any of her labs display something positive then that surely signifies something is amiss. If the BUN lab is positive than it surely would be something with her kidneys. But CBC's, etc. out of range would signify a problem with her white blood cells and pretty much says she has type of infection somewhere in her
body.
You need to take her to a reputable hospital, preferably a teaching/research hospital, as they love exotic cases.
Just take charge of her health and you won't regret feeling guilty if she has a condition that could have been diagnosed earlier.
Thank you for your response. I didn't think of a teaching hospital. We have San Francisco's teaching hospital within 30 minutes. Thanks again.
Thank you for your response. She has been tested for kidney stones(ultrasound) with negative results. I understand that they may disperse(or whatever) between the time of pain and the test, it's just that she has so many symptoms that I can't imagine it being as "simple" as that.
On a daily basis she has, in her words, dull back/kidney pain(she has had kidney infections before and knows how that feels). Sometimes, the pain is more severe and causes light headedness and nausea.
All the other symptoms are most days, fatigue, night sweats, urgency to pee, getting up at night to pee. She also gets a bad case of hives often. She says they seem to be worse when more symptoms are occurring.
I know this is a wide variety of symptoms. She has had allergy tests for the hives, but I believe the best answer for the hives has been, "She might be allergic to wheat." She has cut out anything that may be causing hives, which hasn't helped.
I really want to thank you again for taking the time to help out.
Thanks for your response.
You are sitting in the lap of the best doctors in the US...San Francisco. You are so fortunate because you have the UCSF Medical Center, including Kaiser Permanente. UCSF is ranked #6 on the BEST HOSPITALS HONOR ROLL for 2018-19.
Good luck and let us know daughter's outcome.
Thank you so much, and I'll be sure to let you know.
Hi Matthew
Why does your daughter think the pain is in the kidney?
Has anyone ruled out other problems with pain in the associated area?
Left upper back could be muscular, spleen, stomache even lower lobe of lung, right upper back could be gallstones, liver, billary colic and again lung or musculoskeletal.
I only mention this as if you focus on one thing only you may miss the real cause of pain.
All the tests for kidney are normal maybe it would be worth an MRI scan for a proper diagnosis.
Good luck I hope your daughter finds a diagnosis and treatment soon.
Thank you for your reply. Up to this point in time, she has been following doctors plans and recommendations. I know that diagnosing a medical condition can take time, but it seems we have been running in circles up till now. Your suggestion is exactly why I've come to this forum. I've been wanting ideas for we places to look, different tests to consider.
Thank you for taking the time to help us out.
Matthew
Another suggestion is to check her spine, from 13yrs to 23yrs is a growing time, I wonder if she has a scoliosis ( slight sideways curvature of spine) which may impact on just one side. Again just throwing out a suggestion, perhaps a private body MRI maybe your only option but expensive, perhaps try and persuade a Dr to arrange this which would save cost on repeated isolated investigations.
Good luck x
Thanks again. Very much appreciated.
Look up nephroptosis and Loin Pain Hematuria syndrome. I went through something similar and ended up diagnosing it myself and then by an actual doctor.
I would also look into mast cell diseases/syndromes. MCAS and mastocytosis causes a wide array of symptoms including the ones you listed. I have EDS which is hard to diagnose, and they say “when you can connect the issues, think connective tissues”. I was undiagnosed my whole life until the age of 32, and the best advice I can give is to research and don’t give up!
Thank you very much. I will definitely have her look into that. It will be a new thing to check for. Thanks again.
did toy find any scars for you daughter???? I'm 10 years sammmme!!! I cant deal anymore. the pain is excruciating I'm in Idaho. no teaching hospitals. so hopeful you found answers n could help me
The same thing is happening to me. I am 22. I have had so many health issues it's ridiculous. I had hpylori for a year before it was ever found. I just got diagnosis with blood clots in my lungs. All my labs are normal but I feel this kidney pain everyday. It's dull, it feels like it burns or is infected or something. They keep telling me everything is ok but no it's not. Something horrible is wrong. I feel both of my kidneys, I know it's my kidneys & I'm peeing like crazy all day. It's horrible pain & it's hard to sleep or be on my back. I seriously feel like I am going to die. I'm more terrified of this than the blood clots!!! I had a ct scan everything showed it was fine. I am getting my gallbladder out Thursday to see if it helps my right side pain but I have no gallstones and my hida scan was good. I think it's a pointless surgery and I'm just going to be in more pain, not to mention I have to come off the blood thinners for 2 days for this surgery. you guys I am Terrified I am not going to wake up. can you please please pray for me. I just want my life back!!!!!! I am so scared and no dr is trying to help me. they are horrible here!!!!!
Hello, I have a similar thing, been in pain on and off since 2005. This week I have had urine, blood and ct scan which is all fine which is hard to understand as I was in pain while having the scan and I was sure they should be able to see something. I have been round and round in circles with all these tests over the years, it gets tiring.
I'm thinking I could be extremely sensitive, so foods that are harder on the liver or kidneys which are causing pain. Tea, coffee, high fat foods, chocolate alcohol can trigger anything from a couple of days of niggles to absolute agony for 3 weeks. I was vegan a couple of years ago and the pain went away but I decided to eat regular foods and it has all slowly come back. This week I have gone back vegan and feel better. Sorry for the long reply. I hope something I have written can be of some help and you manage to get a plan in place.
Thanks.
Hi Matthew
Hows your daughter doing now?
Her symptoms sound like mine, I'm 38, female and in the UK. I started out with having kidney infections with all the symptoms, many years ago in my early twenties, which have very slowly gotten closer and closer together, to now this year their back to back. Sometimes they show up in culture tests but most of the time they don't. I've had such battle with gp's with negative results, though luckily I've found a good one and she prescribed antibiotics which work. I'm now very recently on a low dose daily antibiotic to keep infections at bay, and so far it seems to be working.
Though I've noticed in recent years I'm still in pain following an infection and it can take a while to go. I'm in pretty much constant pain now, the pain gets much worse when I lean back on it, I also get shivers down my side when in a lot of pain. I'm now on a high dose of pain relief (co-codamol ). I'm having regular blood tests and urine tests to keep an eye on it. My blood test does show raised crp and has done for a few years now, its usually around 4-12 though they've said that it could just be normal for me, or it could be something like arthritis in the body. Other than that my bloods are good. I've had ultrasound, ct, camera in the bladder and all have come back normal. I've been referred back to the urologist, though they don't know what it is as my results are all clear. I'm really hoping in time the pain goes away now I'm on a daily low dose antibiotic. I just can't keep being in pain and taking cocodamol.
I've really had enough of this now.
Does anyone have any insight into what it could be please? With greatest thanks Rebecca
Hi Mattew, I go through simular issues, some things are sneaky, I get sent home because tests come back good but then I go elsewhere & get a Urine Culture done & it will show something that the regular urine test will not show
Also often my ultra sound will not show stones but a cat scan will show stones
Somtimes a cat scan isnt even clear enough to tell if im partially blocked by a stone
its so frustrating
Also I just reciently found out that what causes frequent stones in woman is often because of having noduels on the PARATHYROID GLAND
so now I will see an endocrinologist as well
Right this minute I am being discharged from the ER with kidney pain because all my tests were good but i never got a cat scan tonight because they were so busy
So I will go elsewhere for a cat scan tomorrow
hope this helps
Good luck