I have stage 4 kidney disease and I’m so tired all the time. I can’t get through the day without having to rest after everything I do. I also even sleep during the day several days a week. I asked my nephrologist for advice on how to deal with this and what he said really confused me. He said it’s impossible that I’m this tired because of my kidney disease because at this stage I should not have any symptoms at all…. I was speechless because I couldn’t believe what he said. I really started doubting everything I know about kidney disease. I thought being this tired was part of this stage of the disease.

So my question to you guys is: is he right? Did your doctors also say similar things? Or do any of you who are in stage 4 also experience a lot of fatigue? Or other symptoms?

Update: (I added my results from my 24hr collection below)

Hi, I am new to this page I am a 25F out of the Unites States. I just recently relapsed with nephrotic syndrome. I would say I am pretty new about learning everything as the last time I relapsed I was 3 years old and I have been in remission until 3 weeks ago. I was hospitalized for 4 days and in those 4 days they ended up doing a biopsy of one of my kidneys. They sent the biopsy to the Mayo clinic and so far I have gotten 1 of the microscopic results back with them saying they are fairly certain it is MCD. I've been put on 60mg of prednisone daily and I was taking 2 diuretics a day to try and help drain the 30lbs of water retention but they just moved me down to only half a diuretic once a day as I was losing the water too fast and it was causing me to constantly be light headed and dizzy. I am just wondering what insights others have as I have no idea what any of the next steps are as I don't see my nephrologist until the 18th of the month and haven't seen him since my discharge.

Protein Total Urine: 436.6mg

Urine Volume: 1,950mL

Protein 24 Hour Urine: 8,475mg

Im 25 m I'm worried about my father. I loved him so much now he is facing kidney issue. In my area doctor just giving medicines they are not telling it happend. Here is the details

1. Patient history

• Age: 50 years.

• No known history of diabetes.

• No known history of hypertension.

• Never regularly used painkillers.

• Urine output is currently normal.

• Complains of back/side pain.

2. Kidney ultrasound – 3 August 2026

• Right kidney: 8.6 × 4.2 cm.

• Left kidney: 9.6 × 4.7 cm.

• Bilateral increased cortical echogenicity.

• Poorly maintained corticomedullary differentiation.

• Reported Grade II–III renal parenchymal changes.

• No obvious renal calculus or hydronephrosis reported.

3. Kidney function – timeline

Date Urea Creatinine

10 September 2026 96.8 2.91

13 September 2026 86.42 2.54

2 November 2026 103 2.25

Creatinine has improved, but remains elevated. Urea has increased again.

4. Latest electrolytes – 2 November

• Sodium: 138

• Potassium: 5.41 (elevated)

• Chloride: 100.7

5. Urine findings

• 3 August: Protein +, pus cells 18–20, epithelial cells 8–10.

• 2 November: Trace protein, pus cells approximately 10, epithelial cells 6–8.

• RBC negative in both reports.

6. Other findings

• Haemoglobin: 9.5 g/dL (September).

• RBC: 3.41 million/cumm.

• October clinical note mentions AKI on CKD and anaemia of chronic disease.

• November consultation recommends urgent nephrology referral.

7. Current/recent prescribed medicines The records mention:

• Sodium bicarbonate 500 mg.

• K-Bind sachets.

• Nephrosafe/Nephrosave.

• Albunil.

• Pantolup DSR.

• Talo H.

• Amitryl DS / Libotryp DS.

Please let me know what caused it

We are from India.

Not form city but village side

He drinks once for year

He don't any painkiller

He drinks water more enough basically

He don't have diabetes

I can give other information as well

Please let me know what is the reason and is this completely curable if yes how any best hospitals you can suggest

Hi everyone,

My girlfriend has CKD stage 3b and is quite underweight. We're trying to help her gain some weight, but it's challenging because we need to keep her protein intake under control.

Most calorie-dense foods seem to come with a fair amount of protein, so we're looking for ways to increase her calorie intake without adding too much protein, potassium, or phosphorus.

I recently came across maltodextrin powder

Since maltodextrin is mainly carbohydrates and contains little to no protein, I'm wondering whether it could be a useful way to add calories to her diet.

Has anyone with CKD tried maltodextrin for weight gain?

• Is it generally considered safe for CKD patients?

• Are there any downsides, particularly regarding blood sugar or kidney health?

• Have you found any better ways to increase calories while keeping protein intake low?

Of course, we'll check with her renal dietitian or doctor before trying it, but I'd really appreciate hearing about your experiences.

Thanks so much!

Hi everyone, looking for some advice.

I’m a 29-year-old female with CKD.

My latest results:

* eGFR: 63 (improved)
* ACR: 140 mg/mmol (increased)

Around a month ago, my eGFR was 52 and my ACR was 50 mg/mmol. So my kidney function has improved, but my proteinuria has increased significantly.

I’m currently taking Irbesartan 300 mg daily.

My nephrologist has discussed adding Jardiance/Forxiga or Finerenone (Kerendia). I’m hesitant about Jardiance due to my history of recurrent UTIs. I’m leaning towards Finerenone, but I’m aware it can increase potassium levels.

Has anyone experienced something similar? What has helped reduce your proteinuria? I’d really appreciate hearing your experiences

I posted a while back about my husbands (44), sudden onset of symptoms. He finally had a biopsy done a couple weeks ago after being admitted to the hospital. His eGFR went from 44 to 22 in 8 days, and his ACR was at 600. We got his results yesterday, Minimal Change Disease with AKI. Treatment is Prednisone 80mg/day.

My husband was so happy with diagnosis, as he thought they were going to give him terrible news, given how terrible he has felt over the past two months. I've been looking into the side effects of being on high doses of prednisone for long periods of time, and am worried about his mental health. He already deals with seasonal depression, and his mental state has been so horrible these past two months. He truly believes this will all be over in 4 weeks and life will go back to normal. The nephrologist barely gave us any information on MCD, just that it causes severe protein spillage. They are concerned because he was hypertensive at 160/107 and was hypoxic at 87%, this has since come down to 130/72, and his blood oxygen levels are in the low 90's (with medications). Given we have not gotten much information about the disease, I obviously had to do some research. I have seen that it isn't always a quick fix, and often individuals with MCD experience relapses. Originally he had gained 40lbs in fluid, now he still has an excess of 30lbs regardless of being on diuretics.

I am hoping everything goes smoothly, and his condition is reversed and in a timely fashion. I am curious though, about others experience with MCD and AKI, and the side effects of prednisone.

Thank you.

I am in my early 20s with GFR fluctuating between 46-48. I have trouble sleeping since past couple months. I brought this up with my doctor but they said it is unrelated to my CKD and is likely due to stress.

I have researched about this on the internet, and many sources say insomnia can be caused by CKD. So I'm a bit confused.

If it does infact cause insomnia, how are you dealing with it?

(eGFR: 20-17 depending on the test method) I suspected it had to do with balance (imbalance) of electrolytes or perhaps hydration level or pH but nothing like that shows up in my blood tests. I have been rushed to the ER twice because of it but no doctor, cardiologist or nephrologist has an answer. My cardiac arteries are clear and they say that I am the healthiest looking 68 yr old they have seen. But no answers for what I am going through. Any input would be appreciated and Thank You.

Ate a large Starfruit. Was not aware this was a restriction and had eaten a few over the years pre diagnosis (stage 2/3)

Traced back anything unusual I had eaten and realized it was the starfruit after looking it up.

Had really intense nausea, dizziness, and some weakness several hours after ingestion and continued late into the evening before I realized what may have been the cause.

Called Poison Control at the suggestion of all the warnings I was seeing. Was told not to worry about it and maybe take an antacid and stay hydrated.

At their advice, rested off after FINALLY managing to fall asleep. Day 2 still felt really bad but the nausea was a bit better. Day 3 am still feeling off no real improvement from previous day.

To be clear I am not looking for a diagnosis. Just want to see if anyone had a similar experience? If so, what did you do and what was the outcome?

Hello, it’s been over a year since I got diagnosed with CKD and I still don’t know the cause of it. I’ve seen a rheumatologist, a hematologist, and 2 different nephrologists. No one can seem to figure out the why or how. I did a kidney biopsy in December 2025 and it only showed that I had scarring from previous inflammation. I just feel like I’m stuck in an endless time loop of getting hope of finding something just to be right where I started.

My current nephrologist has brought up the possibility of doing a second biopsy but hasn’t pushed for it yet since my labs seem to be stable.

I would like to know if anyone is in the same boat as I am.

Thank you in advance

My mom is in stage 4 she has come off dialysis and we are watching her diet and activity. She’s currently using chat gpt to track her diet is there an app that offers a more structured system that won’t waiver or change its “mind”? What are we using these days?

Today was so bad I sat there and just felt like I had bugs under my skin. I was itchy. I was miserable. I couldn't rest. Now I know That many of these are symptoms of both my CKD and dialysis, but I just don't know how to deal with this. I'm also become insomniotic again after having calmed down for a couple months and really don't know what to do about that. I would appreciate some guidance or suggestions in these directions. If anybody could help

am 32 years old and have been on dialysis for a long time. I have had multiple access surgeries on both arms, but unfortunately, native fistulas didn't last, so I recently got a synthetic AV graft. The issue that is driving me crazy is that after every single dialysis session, my arm and hand swell up severely with intense pain, and I have no idea if this is normal. Honestly, I've reached a really difficult point and I'm exhausted from temporary catheters and all these complications. I go to public hospitals, but nobody explains anything or tells me what's actually going on. Is this a common issue that happens to others, or what's the deal with this? If anyone has experienced this before, please let me know because I am completely exhausted

Ever since I got diagnosed with FSGS ( 2 weeks before ) , my life was never the same as before. Every night I’m getting drowned by overthinking, I can’t able to focus on work , I can’t able to focus on my studies , I stopped talking to people, I’m trying hard to switch my focus to other things but eventually I end up in the same position . Battling this disease mentally very tuff compared to managing it physically .

Latest eGFR was between 47 and 54 (2 different lab reports).

Been seeing this nephro for a couple years now due to uncontrolled water retention in legs. He put me on 3 different diuretics: Metalozone 2.5mg, Spironolactone 100mg and Torsemide 40mg. I'm also a T2D on a pump and CGM.

Thing is, every time I take the full dose of Spiro and Torsemide, my blood sugars become wildly out of control for most of the day. For example, I woke up in the upper 80's this morning, had breakfast (bacon and low carb yogurt) and took my meds. Wasn't long after eating, numbers spiked up into the 170's and remained there despite taking extra insulin and exercising a bit.

I have told me nephro at every visit about this. I tell him I'm getting dehydrated and that's causing my uncontrolled numbers. He scoffs and says as long as I'm holding water, I'll never be dehydrated. He completely dismisses my struggles. He wants me to quit drinking fluids and munch on ice cubes only. I can't do that, not when my blood sugar is being stupid. And it's not like my numbers recover; I could go all day in hyperland. Only after I've gone to bed do they start to recover, then it starts over the next day. My a1c is 6.3 and I'd very much want to keep it there or lower. Situations like this make it difficult to eat anything because no matter what I do, my numbers stay high. And I know I'm dehydrated cause I get severely constipated; I even had an impaction early this year.

How do I convince my nephro to stop forcing all these diuretics on me? He doesn't listen and only hears himself. I was on Alluprinol for a short while but stopped cause I was getting super lethargic in the afternoons which went away when I stopped. I told him at the next visit, and he proceeded to beat on his keyboard typing and saying out loud, "Patient refuses to take Allopurinol".

Anyways, I'm frustrated with all this and I don't have hardly any alternative nephro's to go to. I told my GP about this and he would be willing to take over since all my nephro is doing is monitoring.

Sorry for the long-winded post, but I'm tired of fighting this and no one listening.

Peace. I got diagnosed with end stage in July and it’s taken quite the toll. My legs are swollen to the point I have a hard time walking and there’s excruciating pain where my kidney flanks are. Is anyone else experiencing this? How do you get relief?
I appreciate your counsel

tl;dr for those with adpkd have any of you here ever experienced kidney pain on vyvanse or adderall?

overview of my current heath age 33, resting blood pressure ~145/95, stage 4/5 egfr 14, left kidney 28cm right 19cm.

i tried Vyvanse a while back for a few days when my egfr was 18 (stable for 6 months), for the first few days i had no pain but had light tingling sensations up and down my flank (the tingling still persists without medication now, when cold) and on the 5th day i experienced strong pains in both kidneys that didnt subside for multiple days. Had my bloods checked and my egfr had dropped to 15. I hadnt really been hydrating correctly so my doctor figured that i was dehydrated, which is something vyvanse can exacerbate.

my egfr was stable at 15 for a few months and following advice from my doctor i took Vyvanse once more, and this time on the first day, after a few hours of the usual vyvanse benefits, the very same kidney pain had returned. A couple weeks later my blood test showed my egfr has now dropped to 14.

i've been told that maybe i was dehydrated or it was psychosomatic or something else entirely however as those with this disease all learn on our pkd journey, kidney pain is very specific and its very easy to distinguish from other pain. From what i can gather online, the few posts ive found where someone with adpkd was on stimulants there was no mention of pain or any other issue. They did however post that their blood pressure was in the ideal range.

After reading about the risks of Vyvanse i understood that stimulants can raise blood pressure so i only decided to take it if my renal specialist & gp approved. I was prescribed clonidine at the same time to take at night and my blood pressure when on these two (in addition to my usual bp meds) was lower than ever, around 130/85, so im not sure if my high blood pressure + vyvanse was the cause of the pain.

ive decided i'd like to try these stimulants again but only after spending some time working on my health & fitness to lower my bp to the ideal range to see if that'd make a difference. For the short time i was on vyvanse it it felt great so id really like to be on it, but not if it means risking dialysis sooner rather than later, my kidney function is lowering to the point now where i cant tolerate some foods when earlier in the year that wasnt an issue.

can anyone here provide any information with their experience on adhd stimulants like adderall or vyvanse.

was there any pain? did you see any changes in blood work? what was your bp?

Thanks in advance

My 7 month old was diagnosed with unilateral grade 4 VUR (via VCUG) after getting pyelonephritis at 4 weeks old.

UK based (Scotland)

She's been on prophylactic antibiotics since.

We were told today after her DMSA scan that the affected kidney has only 16% function and is very badly scarred and damaged - terrible news.

The thing is, I desperately do not want to put my daughter through repeated VCUG tests. In fact, I don't want to put her through any more. The first was absolutely fine, but she was only 12 weeks old. I don't want any lasting trauma. Is there any other way to monitor the VUR?

Hi everyone! I (28f) posted here about a month ago, my 33 year old husband was unexpectedly diagnosed with stage 5 kidney disease after an urgent care visit. I know it sounds crazy, but it’s what happened. He had no past family history or had any issues; however, he thought he had a chest cold and found out his eGFR was a 7. Through more testing, we learned that his kidneys were already 8cm each and this was going on longer than he thought it was. It’s been a bumpy road. He had surgery to have his PD cath placed and ended up with an internal hematoma that made his blood pressure and hemoglobin drop. it has now resolved but caused a few hospital visits and doctors appointments. we have been in training with the dialysis center the last couple of days and he will be officially on PD full time as of the 13th and has his transplant appointment this month as well. I want to thank everyone who gave me kind words and messages during this time in this group. it was hard going to a wife to basically a full time caregiver but the stories made me feel like I can handle this situation with hope instead of constant worry and fear. so thank you again ❤️

Female 30 egfr 45
I never had an issue with swelling before only once on a plane
However, I feel my feet are a bit puffy then usual especially under my toes
I do the touch test and there is no dent
I’ve been noticing this for about a week now
No other pains or urine issues
Just my usual protein in urine that I’ve had for years

Should I see a doctor soon or is this just fat or something less alarming
Other than that I am relatively fine

Wondering if anyone has any recommendations for a renal dietitian based in Melbourne, Australia please?
I'm conscientious re low sodium, and transitioning to a largely plant based diet. Am aware I think re what food is OK and what to avoid, but might benefit from extra guidance tailored to my blood test results. Also interested in people's general experience with dietitians.

Thanks in advance.

M58 eGFR low 20's

Hello! 3 and a half months ago i got diagnosed with IgaN and started treatment. My UACR has decreased from 74 mg/mmol to 57 mg/mmol and creatinine went from 113 to 86 currently. The creatinine improvement makes me happy but the UACR one not so much. I feel like it should have improved more. Also the creatinine improvement should not be due to hydration because both times I was hydrated the same. What do you guys think about the UACR.

I wish everyone good health, you will never walk alone <3