Confused: I'm a 47 year old female with... - Early CKD Support

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Confused

wendyshouse profile image
13 Replies

I'm a 47 year old female with eGfr 36. I'm exhausted most of the time and generally feel unwell. At my renal appointments my Doctor said I should be having no symptoms of CKD as I'm not yet at stage 4. I was just wondering if anyone else suffered from symptoms?

Thanks 😊

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wendyshouse profile image
wendyshouse
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13 Replies
phillen profile image
phillen

That infuriates me when they say that My hubby was also like you he was so frustrated he felt his energy going he used to do hill walking a lot it was his hobby the last time he managed was a real struggle about 7 years ago he was in stage 3 then he kept saying how much a struggle everything was getting & itching he was terrible in stage 4 he would drop to sleep at the drop of a hat & a couple of times nearly fell asleep while driving! so no your not imagining it! & it makes me so angry when i hear a nephrologist saying this!

wendyshouse profile image
wendyshouse in reply to phillen

Thanks so much for the reply. I was beginning to think it was all in my head. I too have itchy skin and restless legs but its the tiredness that's getting me down .

Jjlinden profile image
Jjlinden

This seems to be a common theme. Over the last few weeks I have felt completely exhausted. Just a little light housework finishes me off and if I attempt to mow the lawn, I can't do anything else for the rest of the day. It makes me cross that we are told there are no symptoms at stage 3 which I am also at. I also get gout and restless legs but no itchy ness (yet!). I drink Fever Tree tonic water for the restless legs, it has natural quinine in it, and cherry juice or cherries for the gout. This does seem to help but I know it doesn't for everyone but it's certainly worth a try. I've been at stage 3 at least since 2009 and not one of the gp's at out surgery thought to tell me until last year. And the start of my feeling tired all the time dates from then.

rabbit01 profile image
rabbit01

Yes it is quite common for people in stage 3 to feel very tired as I did and I also have very itchy skin. What surprises me is that your kidney doctor made such a silly remark to you. It is very well documented that some people suffering with CKD feel very rough indeed whilst having a relatively high gfr and yet other people can carry on as normal with only 15% or so remaining. I think you doc should study his subject a bit more thoroughly.

Chin69 profile image
Chin69

I don't understand the doctors you tell them how you feel and they say no it's not how your suppose to feel. It's only logical that if your kidneys are working at less than half what they should you are going to feel something. The kidneys produce new blood as well as filter the proteins (or something like that) so what is our blood like! Not as it should be, when the potassium and salts are high we feel drained and itchy. I don't know how busy with work you are, but if you can take time out to rest properly maybe at lunch time, then schedule your weekend to nap in the afternoon. You are feeling what many at your stage feel.

Mgt8 profile image
Mgt8

....as all of the above, some people have symptoms, some don't.

If your doctor says you shouldn't have symptoms then he/she needs to make sure that you don't have symptoms by suggesting what you should do to prevent them.....

If at stage 3 we should feel fine, then say 'that's great! So how can you help me to prevent them from now on?'

At stage 3, I felt lousy. I had to give up a very enjoyable career because I felt so bad. I am now at stage 4/5 (egfr 12) and feel much better because I have found ways of making sure the symptoms I had then, don't bother me as much.

Our doctor isn't just there to tell us how bad our kidneys are and to treat them but also to help us to feel better and to lead a more healthy life. It sounds obvious but it doesn't always happen unless we ask them the right questions.

Good luck with things; try asking about iron ....and/or Mircera injections for tiredness. I found losing some weight and having a daily walk also helped.

wendyshouse profile image
wendyshouse

Thank you all so much for your useful comments. I'll try the recommendations and hopefully start feeling better. I do work full-time and have a growing family and 2 dogs that I walk for an hour daily. Perhaps I should slow it down a notch. I am 60kg so not overweight. Again thanks to everyone for helping me feel less of a fraud 😊

chima13 profile image
chima13

" Wendy I totally concur with you. I am 59 and at 36 also and I am exhausted all the time as well as feeling sick. My red blood count is at 9.8 which is extremely low and also accounts for some of the fatigued. Unless you have been in our situation you can't tell us how we feel by the so called numbers. I was at stage 2 in 2005 and didn't feel any difference for awhile. I just had lunch and eating a meal at this time doesn't energize me instead I get even more tired."

bellefrank profile image
bellefrank

Hi Wendy, what a silly thing for anyone with medical knowledge to say. We are all different and if you are suffering symptoms then you need help to overcome them. My husband had episodes of gout and tiredness for a number of years before we changed to a G.P. who was and still is a good friend. It was a shock to hear he had C.K.D his level then was grade 3 at 56 but had been lower. No-one had ever mentioned it although it had been noted. So frustrating........Please press for the help you need. These people are not Gods and if you need a 2nd opinion you are entitled to get one. Best wishes. Belle.

googie profile image
googie

I have egfr of 22 , stage 4, and feel very tired all the time, as though I am continually fighting to stay awake. I love my afternoon naps. I told one of the renal doctors this last week and she just suggested checking my thyroid. I can't put my dose up as it gives me palpitations, so I don't know what they will suggest if it is that, but I honestly think it is just my kidneys and not my thyroid. Luckily, I don't feel ill and I don't itch.

Being tired is the only thing that is getting me down.

wendyshouse profile image
wendyshouse

Hi . Means so much to me knowing I'm not alone with my symptoms and that I'm not imagining them 😊 Hopefully I'll convince the consultant at my next visit in a few weeks time.

Pennyruss profile image
Pennyruss

I wonder whether you are anaemic? My eGfr is only 27. I feel much better and less tired since my renal cosultant said I was a bit anaemic and referred me to the Anaemia specialist nurse. I had an iron infusion and then was on Epo injections fortnightly for a while but am now just having a blood test every month to make sure my blood count doesn't drop. It might be worth just asking.

Penny

dizzydi profile image
dizzydi

Hi, my function is at 38egfr, came up one from 37eGFR, but I understand the tired bit, now with my Neph I was told being tired with CKD can happen at any stage as our kidneys are not the same as anyone who does not have kidney disease. However, I do have a son with special needs and I lose sleep at night times because of this, but I do try to take a nap if and when I am able to, so do the same if you can. All my other levels are in normal range, so all other issues are ruled out of the tiredness. Good advice given to you here from other posts x

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