CKD stage 4 - why is it that most days I feel fine yet some days I feel really awful (and what can I do!)

[rabbit01]

Hello all, I hope you can help me with this…I have late stage 4 CKD with an egfr of 18% and am on no medication for anything. I still work full time and have a long train commute. My problem is that most days I feel absolutely fine and can go for a few weeks in good health and with a fair amount of energy yet some days I feel really awful. The symptoms I get are that my hands get cold and ache and my joints ache and I feel so weak and don’t feel like eating or even moving! This lasts for a day or two with me sitting down doing nothing then just as quickly as it came on it is gone and I bounce back to my normal self and feel fine for a couple of weeks. Work are being very good about it (They are fully aware of my kidney problems) but I have had 3 days off in the last fortnight. So my two questions are dear members: a) Is what I have described normal for people with CKD stage 4? b) Is there anything I can do / or take to avoid these episodes?

[Nicolala]

Firstly, well done for continuing to work. And yes, this is fairly normal I think. Maybe your creatinine and urea go a bit higher on these days . Your kidneys are still working away, but it's probably taking its toll and some days you will feel more tired. Drink plenty of water, avoid eating too much red meat as this causes the creatinine to be higher, although don't avoid it completely as the protein is good for you, and generally try to take good care of yourself, get a little exercise daily and don't overdo things. Good luck.

[rabbit01 in reply to Nicolala]

Thanks very much for the advice Nicolala. I do need to up my water intake that is for certain. I start the working day with good intentions to drink plenty of water and then look round and it is nearly the end of the day and I realise I have not actually had that much water. I will have to set an alarm or something on my mobile phone!

[Bunkin in reply to rabbit01]

I do that too! I have always drank a lot of water but sometimes I look at clock and think did I drink enough today. Funny, never used to think about it

[dorri65]

Hi Rabbit01

Really sorry to here you've been poorly, but you did the best thing...rest.

Hope your starting to feel a bit better now. Did you say you were going to hospital August ? Or was it your GP.

Recently saw GP. he said I was (3a) and not to worry, they have caught it nice and early. He prescribed Ramipil ( blood/pressure ) Meanwhile if I feel unwell, not to hesitate and make an appointment. Otherwise see him in 6 months.

Remember go to G.P. If your still not feeling great. Keep in touch.

Doreen

[rabbit01 in reply to dorri65]

Hi Doreen, yes I was quite rough starting Tuesday afternoon but I feel a lot better now. I took three days off sick. Work are very good about it. I saw the occupational health people at work so it is all documented and I have a supportive boss which is great.

I have my regular 4 monthly check up at the hospital next Friday where the specialist reviews the blood / urine tests (had 2 since I last saw her) and normally packs me on my way. She is a funny lady. I think she comes from Lancashire and she speaks very quickly. The longer I am in the room with her the faster she talks. It is like a comedy. Saying that she is better than the first doc I saw as he was in semi retirement and was so laid back it was untrue! I had to book my appointments around his constant holiday trips to France (I think he had a second home out there)

It is good they have caught yours early. I hope you are keeping well and drinking lots of water and not worrying too much.

Look after yourself, I will let you know how I get on next Friday. You take care.

Warren

[Bunkin]

I have not had any weakness. I find that I sometimes have no desire to get up and do things although I feel better when I do. I feel more sleepy but I think it may be bp meds and also have been off for the summer. Am hoping once I start back to school I will feel more energetic!! Depression sometimes hits me out of the blue. Don't know why. Prayers for you. God can do anything!!

[joke]

Hi Rabbit01, your post has managed to lift me as I´ve been feeling down since GFR dropped to 39.36% from 42% 12 months ago...... your impressive working still even if you have to have the odd day off. I have gone on to the National (USA) Kidney Foundation and downloaded an app of theirs ´My Food Coach' this give me a breakdown of the carbs protein and nutrient levels I can have.. they also provide recipes and even though its American and quite orientated to fast food I have managed to find enough info to eat quite appetizing meals. As a result a lot of the itching and aches have disappeared and I have managed to up`my exercise to 2 hour Gym on top of 1.5 hours Breathing exercises (I have Interstitial Pulmonary Fibrosis...lucky me)

[rabbit01]

Thank you Joke, I will certainly check out the NKF food coach app. It sounds like you are doing the right thing to reduce the itching. I get that mostly at night on my legs and I appreciate how uncomfortable it is. You may well find that your GFR bounces back to the 42% or better so don’t feel down. All the best.

[bellefrank]

Congratulations Warren, working full time that is so good. As you know I am sure kidney function can go up as well as down and my opinion for what it is worth is you have probably overdone working, not had enough rest and tiredness has crept up on you. Also, dare I say it sometimes we have such high expectations of ourselves and time to say not now, need a rest. A long journey to work in itself is tiring so I feel you are really a star... Try and have some..me...time....Make time for yourself and do absolutely nothing you don't need to. Wish you so much luck, better health and happy healthy times ahead. Love Belle x

[dorri65]

Hope all goes well to day

Doreen