Anyone else going or gone through this

@havnenlove welcome to Mayo Clinic Connect. Here you will find that many members are going through this and / or have gone through this (myself included). Most of us find a nephrologist (doctor who specializes in kidney problems). This doctor can help you figure out this reason for your kidney disease and can recommend the best treatment for your situation. Possible treatments include dialysis and kidney transplant. Learn about other lab tests that show how your kidneys are functioning. Get a referral to a renal nutritionist to learn about foods that are harder on the kidneys to deal with and develop an eating plan that works for you. How did you learn that you have stage 4 kidney disease, about your creatinine and eGFR? Have you told your provider about the symptoms you are experiencing?

Hi I have a nephrologist but I recently moved and my insurance atm is not here so I haven't been under care for 7 months and I feel im just killing myself this way I hate not knowing how bad its getting but I feel the symptoms are getting worse and worse in april my levels were not tragic same since last check gfr 25 creatine 1.9 but in june my level got high gfr 20 creatine 2.7 so thats explained it a lil but the exhaustion and my muscles constantly tighten like charlie horses all over so im lost I trully feeling Im gonna die in my sleep I wake up gasping for air its just bad:( I dunno where or what I can do anymore

@havnenlove Let me also add my welcome to Mayo Clinic Connect! How soon will your insurance be able to cover you in your new location? Continuity of care is critical for us once we have a disease process going. Feeling like you are retaining fluids by the swelling can be disconcerting. Are you watching your hydration levels? You may be retaining those fluids and need a diuretic if you are not already on one. Even though you don't feel like it, getting out and walking getting some exercise may help you feel better overall and also help move the fluids out. What do you think about that idea? Ginger

I was in a similar situation in 2023. In fact, just learned from my nephrologist today, that I was really at stage 5 back then. Today, I'm happy to report I'm at 3b. I felt exhausted back then, my body ached, my joints ached, loss of appetite, nausea most of the time, short of breath. My creatinine levels were around 6. I ended up in the hospital for 4 days. Blood pressure was causing damage to kidneys, urine was backing up into my kidneys, possible infection. I was taking aspirin and ibuprofen for migraines, causing add'l damage to my kidneys. Now, through management of BP, eating kidney friendly foods, reducing my protein intake and getting exercise (walking 1-2 miles, golfing, biking) - I'm feeling really good. So, you do need to be seen by a doctor, likely a nephrologist too. Once they figure out the cause of your situation, understand, it may take 6 months for your body to recover. And after a year, by catching and treating the condition, you can feel great again. There is hope!!!

This is probably best news I have heard in a serious longtime I have been in such a dark place you have made me feel I got a chance to live because I really felt it was all over for me I will get a new nephrologist immediately and hopefully turn myself around because I hate where im at right now my body numbs just everything feels alienating to me the swelling and bloating is terrible my stomach burns like theres a tear nothing feels like me my legs arms go so numb I can stick needle in and dont feel it im just scared I want my life back 😢

I certainly can't guarantee your journey will be the same, but I felt the same way you do now. Questions in my mind at the time left me scared, feeling like I would never feel good again. But with a good medical team - Primary care, Nephrologist, Renal Dietician, Urologist and others - I got the medications and information I needed to make the road to recovery. I had trouble walking a couple hundred steps, I was short of breath, dizzy, body aches. After a week, I had doubled my walking distance - still with those symptoms. I changed my diet, fortunately I had a wide variety of foods I liked, but I also realized I had to try some things I usually didn't eat. So, my diet transition was probably easier than for many people. Today, about 19 months later, I can walk 2+ miles, at a pace of 100 steps a minute. I don't have to stop to catch my breath, I make the journey non-stop. IF YOUR DIAGNOSIS were exactly the same - not saying it is - you can get better. We are all different, our ailments can all be different, our outcomes will likely be different. I'm just saying, for me, I've come from a situation with such improvement, I didn't expect to feel this good again. I wish you well.

Your symptoms sound exactly like mine and I am so greatful for you sharing your journey. I have one other very serious issue I am having I have terrible bloating everywhere but in my upper stomach is the worst the pressure that it puts on my chest and the gnawing pain in the center of my rib cage it is awful this a new symptom but far worse then the ones I have I just wanted ask you see if maybe you have had any.

I do have that issue at times. I haven't completely figured out the cause, but suspect it is related to the foods I eat on occasion. Just had this issue in the past week. To celebrate a family event, we dined out, with limited menu choices (sodium & protein levels), I opted for a type of burger. I read recently that 'red meat' can put additional stress on the kidneys and the body compensates as best it can. This can lead to a bloated feeling. It took a couple of days to resolve itself. I don't make a habit of eating red meat, I know it is hard on the kidneys. My nephrologist says it's ok to indulge on occasion, just don't do it daily. So, it seems the stress affects the microbiome in the gut, throws things off balance. Red meat certainly seems to be a cause, but there are other foods that seem to be a factor, still trying to determine a list. You might try using a food tracker/diary system. I use Chronometer on the internet. When I feel a bit off, it's time to start tracking what I eat for a week or two, see where nutrition could be the issue. Hope that helps.