Hello, I know some people have posted on various kidney topics but I'm not sure if mine fits into any of the previous.
For the last year or so I have had on and off flank pain (where my kidneys are located). Sometimes it's so bad I have needed to go to the ER for pain medication. I saw my rheumatologist about it and he found that I definitely had tenderness to both sides but my ultrasound looked fine (no evidence of stones or anything) and decided it was muscular.
I did physical therapy to strenghten my back but still have the flank pain on and off. It usually happens when I'm having a flare or a higher pain day. It's just a pulsating pain right where my kidneys are--sometimes one side, sometimes both.
I don't have protein in my urine and only a small amount of blood so I'm not really sure what the cause is. Any ideas? Could this be hydronephrosis?
You've got the same kidney trouble as i suffer with and in the past i've had blood in my urine but not just a small amount but a large amount and what cured the blood then...was pure pearl barley which is used for putting in stew for thickening, cooked on it's own and the juice of it drained into bottles and once cool put it in a fridge to drink cold and you can add a little sugar if you want...it's an old remedy which purify's the kidneys.
I still have the trouble now and no protein in my urine like yourself and i would'nt call the pain Flank more like a quick heavy stabbing pain or sometimes an heavy throb but enough to hurt you....i have both sides swell and i've been examined and they class your sides as tender to touch, my left side i have the most trouble with and it blows out just like as if fluids in their.
I was in the day unit 2yrs ago because of the pain being so bad they wanted to give me prednisone to help ease the swelling but i refused due to it being a steriod...your suffering with inflammed kidney's from the Lupus and sjogren's disease you have, as they can both cause kidney problems.
I've been viewing your profile and you have A1 Diseases overlapping Autoimmune Diseases like myself...where you get alot more complications with symptoms.
It does sound similar to hydronephrosis to me. I have that and it is basically not always caught and named correctly. I've had Ultrasounds and MRI's some of which have caught a blockage with stones, but some that have not.
Also with the hydronephrosis, the pain also (for me anyway) goes around to my abdomen. It is excrutiating like you said and requires a visit to the ER for more pain meds than I have ever been given short of having anesthesia. I have actually screamed from the pain - that is saying a lot because I have a pretty high tolerance.
Also there is bleeding with it - sometimes not much, but sometimes a whole lot.
Does it hurt all the time or just sometimes? When it is hurting, does it stop for a minute or so and then start back up, kind of like labor pain (if you've ever had kids)?
If we were voting, I would vote that you get it checked out and mention the word hydronephrosis while you are in with the doc - a Nephrologist. It sure sounds familiar!
Let us know what you decide to do and how it turns out.
The found that my baldder was to small for the amount of urine i needed to pass and i had an operation to stretch it this year and i'm still having the same trouble with my kidneys and i've had scans, camera's down my throat besides checking me the other end and everything seems ok concerning my kidneys like they've told you but you can get inflammation of Lupus and sjogrens like i mentioned.
Try and get tested furthur to make double sure and please update we. xxx
I have the same thing as you. However, I too have no explanation for it. My kidneys feel like they get inflamed when I am in a flare. I have flank pain and it feels like someone is giving me kidney smashers. I have had all kinds of tests done and they always come back fine. Shot of a kidney biposy they cant tell me anything. My nephrologist told me that my kidneys can become inflamed with lupus. He is the first doctor that told me I have systemis lupus even though my blood tests don’t show that I am positive. I do rarely have protein in my urine however I always have blood. I too have no stones so I think we have stumped the medical profession. My urologist has done every test known to man kind and she can’t find anything either.
I too have only had stones on a few of the occasions. Then the docs mentioned this Hydronephrosis - Ann says it is a symptom rather than a disease and Ann is very knowledgeable so I trust that for sure. No one said to me that it was a disease in itself, but it is written in my medical chart, so I count it as some kind of clue anyway, whereas before all I had was a description of the pain for the docs. So, the word hydronephrosis IS a helpful word for me to have. Perhaps mentioning it will get someone to check out some problems that might relate to that. Like you guys the docs seems to have trouble pinpointing this. They seem baffled even after running test after test after test. Yet, they SEE the pain it causes and they see the blood in the urine, the see the kidney blood testing is off.
Ann is also correct in that this could be one of many other things. This just sounds similar because of the symptoms and all the docs are so baffled and as in Terri's issue they may just come back saying it is because we have Lupus or Sjogren's. I'm sure we all have lots of things that are just because we have these diseases. I just want this particular one to go away. It HURTS.
Draginfli
Dewing3569 said:
JanRN
I have the same thing as you. However, I too have no explanation for it. My kidneys feel like they get inflamed when I am in a flare. I have flank pain and it feels like someone is giving me kidney smashers. I have had all kinds of tests done and they always come back fine. Shot of a kidney biposy they cant tell me anything. My nephrologist told me that my kidneys can become inflamed with lupus. He is the first doctor that told me I have systemis lupus even though my blood tests don't show that I am positive. I do rarely have protein in my urine however I always have blood. I too have no stones so I think we have stumped the medical profession. My urologist has done every test known to man kind and she can't find anything either.
You've had some excellent advice from we all...so i suggest you push it abit furthur and if it's not Hydronephrosis, then you kidneys may be swelling because of the reason i gave you and Deenie, that Lupus can cause inflammation with the organs which as been already stated.
I wish you all the very best with getting a proper diagnosis. xxxx
I have that too. It fels like it is the kidneys though. Not muscles. You know Lupus causes pain and not always can it be seen or read in lab work u know. Thats the bad thing about Lupus. I hope it gets better. Mine gets so bad sometimes it makes me throw up.... Stay strong sweety. We are all here for you
I'm in severe pain with my legs and swelling besides being hot and inflammed red and i'm getting weaker this is one symptom i don't like one bit plus i have my b12 jab tomorrow that's another week of extra pain and nausea. xxx
Ann A. said:
That's great Terri, :-).
So the links that I labelled "lupus nephritis" connect to exactly what you were writing about - inflammation of the kidneys caused by lupus. It is good that we are on the same LWL track. There are soooo many different causes of kidney inflammation.
PS - I hope that you are feeling better. Sending warm wishes your way.
Tez_20 said:
Hi Ann,
I know what the medical term is...it's just that we say inflammation of the kidneys so do alot of specialists in hospitals here. xxx
I love the member's alot and i've had some support since i've joined but i have my legs well supported as i don't want clots starting again....i've had my legs up properly today though and there still seems nothing helping.
Well ste gives me full support and all bruno mainly does is cling to me and keeps smelling my legs.lol
You takecare of yourself also. xxx
Ann A. said:
Terri,
It shows what a wonderful caring spirit you have that you are online helping other people when you are feeling so unwell yourself. Please take care of yourself, mate (I could not resist the "mate"). Your hubby and Bruno want to see you smile. And so do I.
Tez_20 said:
Hi Ann,
I'm in severe pain with my legs and swelling besides being hot and inflammed red and i'm getting weaker this is one symptom i don't like one bit plus i have my b12 jab tomorrow that's another week of extra pain and nausea. xxx
Ann A. said:
That's great Terri, :-).
So the links that I labelled "lupus nephritis" connect to exactly what you were writing about - inflammation of the kidneys caused by lupus. It is good that we are on the same LWL track. There are soooo many different causes of kidney inflammation.
PS - I hope that you are feeling better. Sending warm wishes your way.
Tez_20 said:
Hi Ann,
I know what the medical term is...it's just that we say inflammation of the kidneys so do alot of specialists in hospitals here. xxx
Jan, please let us know what you find out, it seems that there are many of us here with these symptoms and no real explanation for why. While we might not all have the exact same issue - when we are facing the docs telling us they have "no idea" we might have some suggestions for them to at least look at.
I always have difficulty when I have symptoms and the docs all look at each other and say "Beats me!". Then later, they figure it out, but MUCH later after I've suffered.
This message is not filled with medical terminology or anything - just a fellow sufferer of weird symptoms.
Wishing you all the best in getting to the bottom of it!
Best of luck with finding out what's causing it and when you do would you mind please updating we as we always love to know how member's have got on with troubling issues.
Thank you for the thoughtful kind words. All my love Terri xxx
JanRN said:
Hello everyone,
Please forgive me for the delay in response but I have been getting all of your emails and they have helped tremendously! I asked around at the hospital today and got the name of a great nephrologist which I will be making an appointment with tomorrow. It will probably take a while to get in but at least it's a first step.
It seems the pain is always there near a flair but it comes in waves of getting worse. Sometimes it's almost unbearable and I can barely sleep because I am so uncomfortable. My urine always shows blood but has never shown any protein or any changes in BUN and Creatinine (kidney function tests). Just the stabbing pain :(
Thank you so much! I will definitely let y'all know what I find out. Thanks a million for all the input and kind words! You all mean so much! :)
Terri--feel better soon! Good luck with your B12 injection! Hope it brings you some energy
So it's the waiting lark again mate and your right it is weird, did they mention how long an appointment would take...because i really hope they can get to the bottom of it soon for you and thank you for letting we know.
Love Terri xxx
JanRN said:
Called yesterday to make the nephrologist appointment, just waiting for them to get my medical records and they'll call me back with an appointment. Weirdest process to get an appointment but hopefully I'll know something soon!
