CKD 3B - constantly tired and feel nauseous

[Heathercam]

Hi all. I've just joined this forum as thought it would be good to talk to my peers who are in the same position to me. CKD for 22 years and now stage 3B. Went into stage 4 October 2015 and April 2016 but body recovered itself. Consultant seemed dismissive of my tiredness and nausea symptoms last time I saw him and i'm beginning to think I am imagining it all and I should not feel as rough as I do. Does anyone else have these symptoms?

[Celtic]

Heather, certain medications can lead to tiredness and nausea, so if you are taking anything at all do check it out with the pharmacist. I ask because I was put on Ramipril which caused nausea and had to be stopped. I tried it again just to please the renal consultant but had the same side effect, On the other hand, rather than just dismiss your symptoms, did the consultant not recommend a raft of blood tests to rule out anything else going on apart from the CKD?

[Heathercam in reply to Celtic]

Hi Celtic. Thank you for your reply. I am on Ramipril and other drugs but have been for 7 years so possibly not that. He just said he would see me on 3 months - I saw his registrar this time and she was very helpful but couldn't understand about the nausea either. She wants to wean me of my Cyclosporine after November so maybe that will make a difference. Would just be nice to get some answers and I just find it quite frustrating at times. Thanks again for your reply - much appreciated

[nonie2147 in reply to Heathercam]

TRYING GOING ON SITE WITH KIDNEY FOUNDATION OF CANADA. VERY HELPFUL WITH DIET AND WAYS TO RAISE GFR AND LOWER REATININE WITH FOODS- THEY GIVE YOU A LIST OF FOODS TO EAT OR AVOID. MUCH LUCK, PRAYERS AND GOD'S BLESSINGS. HE IS OUR ONLY HOPE AND ANSWER.

[gleongelpi in reply to Heathercam]

Medications can definitely do it. And it can sometimes take years before you feel the effects. I know someone who went through that. Took the same drug from nearly a decade before the doctor's finally admitted that it was that drug. Stress can also do it, in particular to a susceptible body. Add A and B, there you have it. The question is: What are A and B.

[nonie2147 in reply to Celtic]

IT SEEMS THAT ONCE A DIAGNOSIS IS FOUND AND NAMED, FOCUS IS ONLY ON THAT AND OTHER CAUSES ARE NOT EVEN RULED OUT. I WASN'T INITIALLY TOLD I HAD CKD--- MD ATTRIBUTED IT TO NORMAL AGING- AM 78. NOT SO- SEEMS A MED I WAS ON CAUSES CKD- CURRENTLY A LAWSUIT PENDING, BUT THAT SURE DOESNT MAKE ME HAPPY. NOW I KNOW WHAT CAUSED IT- BUT CAN NOT CURE IT. TRYING TO CONTROL WITH DIET AND 60 OUNCES OF WATER PER DAY. WOULD BE HAPPY TO GET BACK TO STAGE 2-AND STAY THERE. PUSH FOR TESTING OF OTHER CAUSES- AND PRAY. GOD IS THE ANSWER-THE ONLY ONE

[Heathercam in reply to nonie2147]

Thank you for your reply. Good luck and prayers sent your way

[Lauriewarm in reply to nonie2147]

Hi. Can I ask what med caused it?

I'm on amiodarone and am getting some abnormal kidney function test results.

[Bunkin]

Hi Heather, you are not alone! I at times feel the same way but the nausea I think sometimes comes on because I wait too long to eat. I do feel tired sometimes too but have found the more I exercise the better off I am. Prayers for you. God can do anything!!

[Heathercam in reply to Bunkin]

Thank you for your reply. I've tried exercising but I am also prone to gout and too much exercise triggers the gout then I can hardly walk with the pain and have to take high dose steroids again. Falling apart I think but trying to stay positive

[Bunkin in reply to Heathercam]

I know, it's like a catch 22 isn't it! I have PKD and really have to watch what I eat. Drives me crazy but I try to stay positive and know God gives me strength to get thru it😀

[derby24]

I am also stage 3 and yes have tiredness and nausea. My gp prescribes anti emetics which I carry with me every day and one taken with water or just swallowed if I do not have water with me, works almost instantly.

[Heathercam in reply to derby24]

Thank you for your reply. I've tried anti-emetic and think they helped - need to get GP to prescribe some more

[nonie2147 in reply to derby24]

TRY NOT TO TAKE ANY MED WITHOUT WATER-MAKES KIDNEY WORK HARDER.

[bellefrank]

Hi Heather... my husband is grade 4....had egfr 27 and dreadful bouts of gout. Great nephrologist gave him allopurinol 300mg daily and has not had any gout since. This drug is supposed to be bad for kidney function but it was so amazing all his aches and pains went, he is less tired I guess no longer suffering dreadful gout pain has helped and 20mg Omeprazole capsule after breakfast sorted his nausea.. In less than a year his egfr has risen steadily and currently 37. Our nephrologist is quite happy with his present readings and progress and we have been able to enjoy holidays abroad and living life to the full. My opinion for what it is worth is being pain free, enjoying eating without nausea and generally being much happier has improved his kidney function. Incidentally our nephrologist agrees with me...... I did say he is great, so encouraging and optimistic we are very lucky or perhaps blessed is a better word. No doctor should be dismissive regarding symptoms we are all different. I wish you all the luck and blessings in the world. Love Belle x

[nonie2147 in reply to bellefrank]

PLEASE BE CAREFUL- OMEPRAZOLE HAS RECENTLY BEEN FOUND TO CAUSE KIDNEY DISEASE IN U.S. LAWSUIT PENDING- WAS CKD 2 MANY YEARS-NOW 3. I AM HAPPY FOR YOU ALL IS GOING WELL- MAY GOD CONTINUE TO BLESS YOU.

[bellefrank in reply to nonie2147]

Thank-you Nonie...The omeprazole was given to my husband as he has a pacemaker, takes apixaban a blood thinner and the omeprazole is to protect his tummy..... It is a bonus in a way that it sorted his nausea. Of course allopurinol is also not good for the kidneys but the lesser of the 2 evils as gout and any infection reduced his kidney function dramatically. Our nephrologist went back over his medical history and discovered his kidney function dropped during any infections including an abcess on his elbow, tooth abcess, chest infection, ear infection gout and upon recovery his kidneys also recovered somewhat but egfr stuck at 27.... For months now it has been around 37, 38... and our quality of life vastly improved.... Hope you keep well and God Bless you.. Love Belle x

[nonie2147 in reply to bellefrank]

SO MANY THINGS THAT HELP ONE MEDICAL ISUUE CAUSE OTHERS. WHAT IS THE ANSWER- I DON'T KNOW- DOES ANYONE? WE NEED TO TRUST GOD. I AM SO HAPPY FOR YOU THAT YOUR LIVES ARE GOING WELL. I AM IN PANIC MODE, WATCHING AND CHANGING DIET, DRINKING WATER, EXERCISING- TRYING TO DO WHAT I AM TOLD- BUT SO FAR, NO IMPROVEMENT, BUT NO DECLINE EITHER. TRUSTING GOD---ONLY WAY TO KEEP GOING. MAY GOD CONTINUE TO BLESS YOU.

[bellefrank in reply to nonie2147]

Please try not to worry as you say trust God... kidney function decreases with age but you can stay at 3B for many years. My husband does not have a specific diet rather all things in moderation... He does try and keep hydrated but does not drink water to excess and certainly not the amount that many people on this forum recommend. The nephrologist advice... if you enjoy a steak dinner then have a full glass of water with it. I guess he is fortunate his blood pressure is fine and he is not overweight and reasonably active also not diabetic. He also had an ultrasound recently was given so much water to drink he vomited most of it back so he is unable to drink excessive amounts of water. The ultrasound was absolutely fine and very clear in spite of his vomiting. We keep optimistic and try and make the most of our lives. Keep well. God bless. Love Belle x

[nonie2147 in reply to bellefrank]

BELLEFRANK- SO GLAD YOU HAVE A KNOWLEDGEABLE AND CARING NEPHROLOGIST- MAKES ALL THE DIFFERENCE. I TRY TO FOLLOW DIET, WATER CONSUMPTION AND FOLLOW DIRECTIONS FROM MY DOCTOR. IWAS BASICALLY HEALTHY-I THOUGHT, BUT KIDNEY STONES WERE ACCUMULATING IN RIGHT KIDNEY-NOT PASSING. REASON?????? AT THIS POINT- NO IDEA WHAT TO DO TO IMPROVE KIDNEY FUNCTION- READ LABELS, FOLLOW INSTRUCTIONS, DRINK WATER, AVOID SOME FOODS-EAT ABUNDANCE OF RECOMMENDED FOOD- AND STILL END UP IN SAME PLACE. I AM 78, SO I GUESS SOME BODY PARTS GET TIRED. WILL CONTINUE TO TRUST GOD- HE IS ALWAYS THE ANSWER. THANK YOU FOR YOUR ENCOURAGEMENT- CONTINUE TO ENJOY YOUR LIVES- WITH LOVE AND GOD'S BLESSINGS.

[curleytop1]

Hello Bellefrank, Am so glad to read about your husband's treatment as it helps to get the situation into perspective for me, and, I hope, for many others. Was told I had CKD (Chronic Kidney Disease for 'newbies') on 24th May this year and to lower my potassium levels and to loose weight! All without any guidance from my Doctor. Will have to wait until August 15th at earliest before I see a nephrologist, Have had no results given to me, even though I've had two blood tests and an ultrasound.

Am not at all happy for myself and for all the other patients in the UK who find they have to 'fend' for themselves. To complicate trying to work out a reasonable diet, no food products in UK need to be labelled with the potassium level, though an MP has a petition organised for this to happen, but he needs 10,000 signatures before Parliament will be legally obliged to consider the matter, and he is a long way from this!

Have spent countless hours researching CKD diets and have started a board on PINTEREST to try to help others. Also, was offered a 'tablet review' by my local pharmacy (I think this is a fairly new service and may not be generally available to NHS patients, but no harm in asking for one) - it proved invaluable, which I did not really expect, as both my blood pressure tablets can cause kidney problems. They are Atenolol and Irbesartan, which I have taken for 30 years and 20 years respectively! I did feel less worried when discussing the diet I had worked out with the pharmacist as she was able to give me further information to research and tell me I was proceeding along the right lines.

I wish you and your husband the best health possible. Curleytop1.

[rabbit01 in reply to curleytop1]

I agree very much with your statement "Am not at all happy for myself and for all the other patients in the UK who find they have to 'fend' for themselves." This has been my experience too.

[nonie2147 in reply to curleytop1]

I AM IN U.S. HAVE FOUND MUCH HELPFUL INFO ON KIDNEY FOUNDATION OF CANADA SITE- LENGTHY LISTS OF FOODS TO EAT OR AVOID. SEEMS WHEN YOU FIRST DEVELOP CKD, DOCTORS DON'T ADVISE YOU- NO MATTER WHAT COUNTRY YOU ARE IN. PARTLY, THEY ATTRIBUTE IT TO AGING PROCESS-AND DON'T CONSIDER IT TO BE ACUTE- OR PERHAPS, EVEN TREATABLE. BY THE TIME YOU ARE AWARE, MUCH DAMAGE HAS BEEN DONE. TELL US RIGHT AWAY, SO WE CAN CHANGE OUR EATING AND LIFESTYLE TO SLOW IT DOWN. OMEPRAZOLE-PRILOSEC- CAUSED MY DISEASE. NOW THERE IS LAWSUIT IN U.S.---GAVE ME THE CAUSE, BUT NOT THE CURE. PRAYING AND TRUSTING GOD- HE IS THE ONLY WAY. SEEMS PATIENTS IN EVERY COUNTRY HAVE TO FEND FOR THEMSELVES- WHY DON'T THE DOCTORS TELL US SOONER-AND BE READY WITH ADVICE?? CHINA SEEMS TO HAVE MOST ANSWERS AND TREATMENTS, BUT HAVE TO GO THERE. THEY ARE CURRENTLY NEGOTIATING WITH U.K AND U.S. TO SHARE TREATMENT, DIET ETC.

[curleytop1 in reply to nonie2147]

Hallo Nonie2147, Thank you for your reply. It seems very wrong to me to keep patients unaware of all the issues that kidney problems can cause.

Best wishes, and good luck to you and everyone - Curleytop1.

[bellefrank in reply to curleytop1]

So sorry curleytop you have had to..fend for yourself.....There was a time when my husbands potassium level was too high. In a way it was fortunate as he had a fairly big banana with his porridge so changed to cereal and a half of a banana . The cereal also improved his iron level or so we decided as that was the only dietary difference from previous... Happy now haemoglobin and iron level has increased, other bio-chemical results within normal range and egfr from 27 to the magic figure of 45 in a year.. He is fortunate I guess having relatively low blood pressure, however he takes allopurinol as he suffered the most dreadful gout but now gout free. Allopurinol is said to be bad for kidney function but our nephrologist has the view that gout and uric acid is the more harmful. Either way being pain free makes for a happier life. In my husbands case, born out by the nephrologists careful graph of his infections over the years, his improvement is most certainly helped by staying infection free.. Have a copy of the graph the neph. did and it is amazing going back over 5 years how any infection caused abig slump in kidney function but rose steadily when infection under control... I realise we are all different and many factors cause CKD and it is a question of finding out what causes the drop in kidney function as well as why does it also improve. Do hope you find your answer and better health is on its way. Love Belle x

[gleongelpi]

I have other symptoms but the doctor tells me I'm just getting old. I replied, "if it was a matter of age, everybody would have the same." Over the last four years, my GFR went from 53 up to 69 back down to 48 and is now 55. They can't tell me what's what. I don't think they know. I don't even know which of my symptoms are really CKD-related.

[Fred1]

Hi all,

I have had CKD for about 25 years with my creatinine clearance starting to increase from 135 and is now 170. This translates to GFR of 33 which I have had for the past 3 years.

Fatigue and nausea are very real. I have found that you get good news and bad news nephrologists.

My first nephrologist told that that I could come to him for 3 blood tests after which he would tell me how many years I had left.

I found a good news nephrologist who tells me that I must stop worrying but follow the diet.

This is very good advice.

I take 270 mg of caffeine to assist with fatigue in 3 daily doses of 90mg doses. (Must be below 300mg)

I also take L-Carnitine, Reservatrol, CoQ10 and other supplements for energy.

Some Homeopaths on internet recommend herbs to clean the blood in order to assist the kidneys but I still intend trying this.

I have bloodwork done annually but since I stopped worrying about my kidneys and started living, I feel better.

This is not advice, only my experience .

Regards

[CKD3B]

I just joined today too. I'm also a CKD 3B with sever nausea ! I hope you keep getting better !

[Becks26]

I've recently been diagnosed with glomerulonephritis iga nephropathy and nausea is my most common symptom, to the point where I am sick on almost a daily basis, sometimes a few times a day and it's not triggered by anything in particular. I also get tired spells that come out of nowhere to the point where I feel physically drained, I sometimes think this could be brought on with being sick all of the time!

With regards to more energy I've recently started exercising more and I've found this has helped my energy more (but obviously too much exercise can be bad for kidneys so consult nephrologist first!) and I have cyclizine for the nausea and sickness but I find it doesn't work all of the time.

Hope you're feeling better soon I would definitely ask for more bloods if it carries on and you want more answers!

Bex

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