Weight loss, skin breakdown with burning pain

[Dana66CKD]

New skin issue. I have lost 39# since April, 2022. Trying very hard to eat adequate protein and get some form of exercise, though last couple weeks unable to walk much due to foot pain. Seeing podiatrist for that. Anyway, have had ckd symptoms this week with intake. Couldn't eat usual amount without nausea, palpitations and elevated bp, so I backed off intake for 2-3 days. Symptoms reduced but now skin burning on coccyx and hips. I guess what I'm asking is if anyone has had similar skin issue and if it got better, what helped?I have modified diet to include egg whites, fish and low salt cheese 4 meals/week, majority plant based diet (80%/20%). Am at stage 2, last egfr 81 up from 55 last April, 2022. I understand there's progression, just want to eliminate as many episodes of ill feelings as possible.

And I will f/u with Nephro, pcp and dietitian. Thanks...

[GoodHealthIsAJourney]

I would definitely speak to my doctor. Typically, one doesn't have CKD symptoms until they reach stage 4 or 5. An eGFR of 81 is considered normal by many labs. You may want to share your food diary with your doctor, so he/she can make a more informed diagnosis. Best wishes!

[Dana66CKD in reply to GoodHealthIsAJourney]

Yes, I get it. Just too many times I had symtoms and couldn't eat all my meals, so throughout this past year, I've lost the weight. I didn't start out at 81. It's gotten better with PB diet, but need to eat more protein. I've had appt. with Renal Dietitian last week. She's made some recommendations.

Have contacted MD for f/u. It's definitely worrisome. I'm not a stranger to dialysis or skin breakdown.

Thanks...

Here's to maintaining 81 or better and no more muscle loss or breakdown 🙏

[WildIris]

Was the weight loss intentional? I'm on a vegan diet, lost weight on purpose, and have no trouble with nausea. eGFR over 80 sounds great, excellent, but the variation suggests that there may be something that only affects your kidneys periodically? Obviously, you'd have to ask a doctor if that can happen. Low fat cheese sounds icky, like made by some kind of chicanery. I eat cheese-flavored (baked) sorta salty crackers sometimes. They make me happy though, not nauseous.

[Dana66CKD in reply to WildIris]

Weight loss was welcomed at first, but not intentional though it improved cholesterol, bp (+ medication). Now that I'm down to 124# began having pain over bony prominences. I am only 4'10-1/2", so perhaps pcp didn't mention concern over losing > 5% 3 months or >10% 6 months at two previous visits. I am trying to eat mostly protein (45-50g/day). Renal Dietitian I know PEW is terrible and I don't want to go there. I hope and pray my Nephro will be able to give me some sound advice, check labs, etc.🙏😥

[WildIris]

Your symptoms are unusual to me. Some strange auto-immune thing? Sorry I can't be of more help, and all my best to you. I sure hope you get to see a good doctor soon.

[Dana66CKD in reply to WildIris]

Thank you!! I hope the nephrologist I see periodically will check related labs. I've been reading articles on NKF website about PEW, but it doesn't reveal if symptoms like mine (skin burning), etc., are what other's have experienced?

[renegade70]

It sounds like possible neuropathy. I get those types of sensations in my feet making it difficult to walk long distances. Some days are better than others. I do not get this in other parts of my body. The experience of everyone is different. Best to check with your nephrologist.

[Km5506]

Sorry to hear about your experience, it sounds worse than mine, but I do recognize a couple symptoms that are the same as mine. I am 66 years old, I to lost about 35 pounds from last October, not on purpose, but I think it was from stress, my brother died last September, and he lived out of state, and since no one else would take care of his estate I was elected. Losing weight was good for me since I was to heavy. But then back pain hit and ct scan showed a kidney stone to big to pass plus bladder infection, well they blasted the stone last November, and about a month ago I was back in emergency with another stone via ct scan but my doctor thinks I passed that one with medication, but they also said I have whole new crop of stones in both kidneys. I was wondering if you had stress

as well? Sorry for rambling on this forum stuff is all new to me.

[Dana66CKD in reply to Km5506]

No kidney stone issues ever. Yes, been stressed more about new kidney issue/health plus have arrythmia, but I've gained back 3 lbs., burning on hip/coccyx abated since wt. gain. New issue seems to be low CBC/RBC's & WBC's. Have referral to Hematologist just to find out if caused by poor dietary intake or other problem? Less tired and new insomnia at bedtime, so started long acting Melatonin 5mg every other night, and new Iron supplement for low red blood count. Hopefully that resolves most of issues?🙏🙂

[Km5506 in reply to Dana66CKD]

Sorry for the kidney stones reference, but I was responding to the things we had in common, also you mentioned insomnia, I have had that since I retired about 15 years ago, I think it’s related to stress. I think all of us that have health problems, is stressful. Not getting enough exercise and having stress is cutting into our sleep. Please let me know how the melatonin works out for you?

[Dana66CKD in reply to Km5506]

The melatonin time- released, is working very well, however, if I don't take it early enough at night, I find myself feeling groggy till late afternoon. I consulted my Nephrologist prior to initiating. Also, it causes headaches sometimes and I take time released alternating with quick acting and alternate 5mg and 3mg, so as not to develop tolerance? I'm still experimenting with dosing. I don't take every night, so I can judge if I'm able to sleep without it too.

[Km5506 in reply to Dana66CKD]

That sounds really good, I hope it keeps working out for you. But as I am sure you know natural is always better, I shouldn’t give advice on this subject because I have taken my share of sleep pills, but I did not have this problem until I had to stop working from disability 15 years ago. But any kind of work or exercise that I can do helps me sleep. But with pain it is not possible most times, so I will ask my doctor if melatonin is right for me, I do remember my brother telling me that he had great results from it. Thank you for the reply