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kidney pain worse in AM.

Chronic Recurring Kidney Pain..Esp in the mornings. (complicated issue) I have stage two kidney disease. (Stemmed from my spina bifida- neurogenic bladder. Previous known reflux. Had uretors reimplanted for this in 1995.) I self cath. (Only way I can go.) I have kidney stones also. Last CT showed 8mm. (was 4mm a year ago). Many gravel-like ones also. Dont know why urologist has not offered medicaion to break up the stones or surgery.  I have SEVERE pain on several mornings upon waking. Sometimes better as day progresses. Others, like today, lasting all day and several days. I have this almost every week at least a day to four days. Been that way for years with no resolve. I had my uretors coated with TEFLON in 1995, to prevent reflux, so that is globbed up in my kidneys. Not sure if that is cause for my pain or not. They cant remove it because it has adhered to my kidneys and i cant lose any more kidney tissue. I take Cymalta, Vicodin, Ultram, Metoprolol for hypertension, Neurontin 600mg, BuSpar, Klonpin, and occassionally Ambien or Trazadone. My most recent blood test results are below: Creatine Clearance: 89ml Creatine Urine 63.5 Cystine 144 umol Albumin 4.5 ALT is 27 total protien 7.3 g albumine 4.3g alpha 1- .3g alpa 2- .7g beta-.8 g gamma 1.2g metabloic panel: BUN- 18 sodium- 141 potassium- 3.9 chloride- 10.3 CO2- 28 glucose- 75 creatine- .77mg GFR est- >60 ml calcium- 8.7 anion gap- 10mmol hemogram: 8.5k rbc- 4.77m hgb- 14.2g hct- 41.8% mcv- 87.6 fl mch- 29.8 pg mchc- 34g rdw-13.3% plts- 249k mpv- 10.4fl phosphorus- 4.4mg intact pth- 53.5 pg/ml vit d- 19 aldosterone- 4ng/dl noreinephrine- 1092 pg/ml epinephrine- 82pg/ml dopamine- below reportable range of 10 metanephine- 42 pg normetanephrine- 149 total 191 renin- .53ng tsh w reflex- 2.72 ulu/ml vit d 1.25 total- 49 vit d 1.25 d3- 49 vit d 2 fractioned- 28 catchecholamines epinephrine- <3 norephineprine- 97 dopamine- 327mcg catchecholamines total - <100 cortisol- 23.8 creatine- 1.05g nometaphrine- 399mcg metaphrines- 195mcg total 594mcg total protien urine 24 hour- 84 mcg aldostrine- 49mcg I am awaiting appt with new nephrologist to go over blood work.......................................................... However, urologist told me that my kidney disease and kidney stones SHOULD NOT cause pain (unless actively trying to pass stones). i can completely tell its my kidneys that are inflammed on and off. And its when I dont have an active infection or am not trying to pass the stones......................WHAT is causing my pain and ANY advice you can give based on my explantion, please do so. I know I am low on Vit D (Dr just prescibed 50K once per week), and that I need to see a nutrionist. Suprised I was not referred to nephrologist and nutrionist before now. But what about my pain????

So can just the years of reflux and pylopherenitis can cause intermittent pain even if not from current infection or stones trying to go through uretors??? My urologist doesnt seem to think I should have pain like this., I see a NEW one in January They get so inflammed and hurt that the pain radiates almost to my shoulder. I have some oxybutinin for bladder spasms when I get those but I just took some to see if helps my current pain- even though its kidney pain not bladder. I guess its still a "smooth muscle"relaxer so hoping this helps. 10mg Vicodin isn't helping. My last CT was Oct 31. I had an appt with urologist and nephrogist this month but had to cancel the appts while my health insurance policy changes until underwriting is complete. Should be any day. I am going to ask they shock them just so they dont try to pass and cause obstruction at a most inopportune time.

From what I am told, I have the % of have one kidney between the two I have. I have a hard time with anti-inflammatories due to having GERD with hiatial hernia due to years of having pain daily with either my kidneys, back, legs, buttocks, nerve pain, etc. I use a heating pad, rest, and Vicodin for pain. Not strong enough.
I also take macrodantin daily at night to help prevent uti since I get them a lot due to self cathing,etc..  Im 41. I have cathed since age 11. Do they make an artifical spincter for the urethra? who would be a candidate for this if so. WHY do they hurt so much even at times I dont have an infection or passing stones? Im hoping my new specialists blast the stones out.
1 Responses
963889 tn?1359677334
not sure on allyour resluts there but the egfr doesnt seem too bad though is low.  it is rare for kidney disease to cause pain, I have stage 3. some of our problems do seem similar though. i had a neurogenic bladder and had a permanent cath, 5I had constant kinfection from cath and 5 years ago had my bladder removed. now have an ileal conduit. the bladder spasms were so severe i was bed ridden.   it was thought that removing my bladder would ensure my upper tract stayed health, sadly this was th eopposite and am now in stage 3 CKD.I have no pain from the kidney disease but do have a number of related symptoms that are getting mroe obvious. O note you say you have VIT D deficeincy, I have this also and it is an early symtpom of CKD as is anaemia.
I cant explain the pain, seems like stones or kidney spasms. I am on transdermal skin patchs of morphine which I find give a steadier pain relief. I havent heard of an artificail sphincter. have you ever had an spc as can also self cath that way?
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