Early CKD Support
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Doctors say “It’s Not From Your Kidney’s”

I have been diagnosed with Stage 3CKD. My GFR went from 59 to 44 in less than a year. I have been going to different nephrologist because they all (3 of them) told me my sysmtoms are NOT from my kidney problems. I am so tired of being told this! I am 63 and I know my body very well, and I know when something is wrong and what my body is telling me. I also have fibromyalgia. The kidney problems started in 2014. I have a lot of symptoms that ARE from my kidney problems.

Fatigue is so bad! No energy or strength whatsoever! I can not do activities with family at all.

Restless leg and hand syndrome. Constantly

Confusion and unable to think clearly.

Depression

Itching

Bumps at different places all over

Bad mood and irritability

Nausea and vomiting

Dehydration-skin, eyes and mouth so dry

Sweats

Now heart palpitations

More Nerve damage, loud ringing in my ears

This has changed my life in the past 4 years. I don’t understand why the doctors minimize this disease with their patients! I honestly think they don’t know! They sure don’t listen to their patients! They should start!!! I know for a fact what I’m saying is true! My cat scan showed both of my kidneys are bad. Small, scarring, and thinning lining.

What bothers me is that they could have kept me from going from a GFR of 59 to 44 if they were doing what they were paid to do as specialists, by TELLING ME WHAT TO DO TO KEEP THEM FROM GETTING WORSE!!!

So I have decided not to go back to a kidney specialist. I will just try to deal with it myself by looking up my own information.

So if anybody else out there is feeling the symptom of stage 3 kidney disease, you ARE feeling them! Do NOT let any doctor tell you that they can not be from your kidneys!!!

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I totally understand where you're coming from.

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Hi, I have unexplained stage 3 kidney disease and last year my GFR dropped from 59 to 53. The doctors shrugged their shoulders and said it was one of those things. I also felt terrible, however I persisted going to the doctors and it turned out I was anaemic and also had low folic acid and vitamin B12. I addressed this all with supplements but still didn't feel 100%. I have food intolerances and did some more analysis of my diet and I now do not eat gluten, dairy and soya. I'm also alcohol intolerant. The biggest impact on my GFR is dairy. My GFR is now back at 60. I now believe my symptoms weren't kidney related they were related to food intolerances and anaemia, however my kidney function was definitely affected by this. Could you get your vitamin/iron levels checked? A lot of the symptoms you mention above could be down to anaemia, and don't let a doctor tell you your results are normal. Get a copy of your blood tests as normal doesn't mean optimal, it can be right at the bottom of the range and that could make you feel terrible. Also keep a food diary to check if a particular type of food makes you feel worse. Good luck.

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Hi Julesboz. I love Greek yogurt but I’ve noticed it makes me feel worse if I eat it.

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Rkgaither, the dry eyes/mouth could point to an autoimmune issue, Sjogren’s Syndrome for instance. Other autoimmune conditions need to be ruled out as many can impact on kidney function - Lupus, for instance - and they can all cause anaemia especially in the untreated stages. A rheumatologist or endocrinologist may be a good place to start - if in the U.K., roughly whereabouts are you? I have experience of an excellent rheumatologist in the South East who thinks outside the box!

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I am in California in the U.S.

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I completely agree with your experience. It has been mine also. My CKD was discovered much later than yours in that I was at eGFR 18% before being diagnosed. That was over three years ago, and I was told at that time I had between 3 and 6 months before dialysis. I received no advice on diet changes from the two Nephrologists that I have seen other than cut down on salt. The only medication I was given was ACE blood pressure tablets which ended up making my eGFR lower rather than helping. Like you are having to do I did my own research on the internet and learned a lot from this forum and that has helped me slow the decline of the kidney function since being diagnosed.

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Sorry you have so many problems. maybe search google for "blood tests" and write all the types of blood tests you think you might want to check...then after the test look over your results for clues and google for more information, then if you find something relevant you can show a doctor. It might take hours or days or longer to gather and read all the information to sort thru it to find the best articles that apply to you that a doctor would also take seriously. I found some information which changed a doctor's mind...they can't keep up with everything. You might also have low dopamine. I think i have that. Also i think there's stuff you can do for ringing in the ears, depending on whether it is the type that gets louder if you clench your jaw muscles...I just live with mine...if it gets very bothersome there's a few things I do to lessen it's emotional impact...also I notice that if I fall asleep with the radio on, after a few weeks of that the ringing is a bit worse...I'm guessing it might have something to do with the mind not having any defense against the sound when asleep....i guess that sounds kindof nuts but that's just my experience.

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Thank you so much JackBurton! This is very helpful! I’ve never heard of the ringing getting louder if you clinch your jaws. I did it and mine did get louder! I’ll try to google it to find out more about it. Thank you again for your post!!

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So what does that say if your ringing gets louder when you clench your jaw?

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Sorry I don't remember. It was about a month or so ago the article caught my attention and I remember thinking it's good they came up with something, so if it bothers me too much there's something I could try. I'm pretty sure it's a new thing. When i have time I'll try to find the article. One of the things I do for myself is reframe my thinking...I imagine that I was unable to hear, and a doctor explained that they had something new that might give me some hearing but with a side effect where I would hear a constant ringing noise...so I imagined that I gave it a shot and now I can hear with that side effect. Put in that perspective, it reduces my anxiety about it a lot. I also sometimes brush the palms of my hands across my ears to drown out most of the ringing, so knowing that i can at least drown out that ringing sound gives me a feeling of some control, which also reduces my anxiety...anyway, I will look for the article when I have time...hopefully can find it in a day or so.

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Have you tried a box fan for white background noise ?

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Hi. I found the information. I guess I didn't read it thru when I first found it because it seems it only reduces the sound volume for a few weeks. When I saw the article I remember thinking "well, at least now there's something that works if want to try it", but I must have been busy or in a rush as usual so didn't read it carefully...still encouraging though i think. You can search google for "Science has a solution for that constant ringing in your ear"

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I am 77 and on Medicare. I was diagnosed with CKD level 3b little over 2 years ago. I too had a GP Doctor that felt was no need to do anything and did not even mention a problem. I relocated to another state and got a new GP Doctor, and took copies of my bloodwork, immediately was diagnosed , and put me on a treatment plan. My suggestion is to take your blood work record to a new Doctor (one who specializes in Chronic Conditions). One who will not have thoughts that "it is just your age".

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Thank You!!! Would you mind saying what your treatment plan was?

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My treatment plan is a pre-dialysis diet which limits sodium, phosphorus and potassium. I was prescribed medicine for triglycerides, cholesterol (non statin). Also a prescribed exercise routine, which is mainly walking.

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Thank you for your reply! No limit on protein?

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Yes. Pre-Dialysis Diet limits protein.

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about protein, I give my mom COQ10 mainly to help her kidneys. I think it has enzymes to digest protein but you will want to search for more information on that. hope you find something to help.

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Oh ok. Thank you JackBurton! Yes that is good information!

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I'm sorry to hear you have had this unfortunate experience. I have just posted in a CKD group about how I know a lot about kidneys from my own journey and because I am a nutritional therapist and yoga teacher which means my view is much more holistic and treats each person as a human being with their own unique set of variables. Many of these symptoms indeed sound like kidney related. Have you got a set of lab results that you can share? This is a great starting point and with GFR at 44, there is plenty you can do to help yourself. I know it's hard but see if you can refocus your energy on taking helpful action and not get too downhearted about your situation. Definitely do continue to get some labs done so you feel more in control. I'm very happy to hop on a Skype call with you to run through the labs you will need - and it might be you already have them. The kidneys look after blood pressure, bone density, vitamin D synthesis, urine output, acid-alkali balance within the blood among many other things. They also from a Chinese medicine perspective hold much of what's called our 'Jing' energy, our vital force. And of course anaemia is a big issue with renal impairment.

Stress also impacts our health hugely so finding ways to bring more calm into your life will be helpful. Walking in nature, taking an Epsom salts bath (magnesium levels are often low in renal impairment and this is a key nutrient for mood and muscle health).

Best,

Ciara

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Yes Hi. I’d be glad to go through my lab results with you. I will be getting some new labs this week. I look forward to talking with you.

Thank you so much for your comment!

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You're so welcome. Ok great. You can book a slot in through here: whollyaligned.com/#/book-in...

Very best,

Ciara

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Mr._ Kidney, are you out there?

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Rkgaitger,

I am so sorry to hear about this. Unfortunately, many medical personnel let too many things slide and think that they are God which they are not. I am sending you all of my warmest thoughts and support to get you through this.

It is what that you can do today, tomorrow and the next day to improve your health, well being and quality of life that matters.

You are entitled to a second opinion and to see as many specialists as needed to get this going in a positive direction. Research but partake of the services of a new renal specialist..asap!

I have looked into nephrology departments of various hospitals and found doctors who specialize in my disorder or have a special interest in it.Health grades and vitals will often give you write ups on various physicians.

Get a copy of your labs, review them and take them to your second opinion with questions and jot them and the answers down in a notebook. You are paying the bill and entitled to a clearly explained opinion in layman's terms.

A kidney friendly low sodium, low protein diet leaning on fresh or fresh frozen vegetables are key. Watch your potassium and phosphorous.

Davita.com is a great site to help.

You have every right to feel as you do, but remember that you are not alone. One of us will always be on the other side of the computer and will always answer.

Life begins tomorrow!

Stay strong and please

keep in touch.

I , as well as the other members of this community care.

Sending healing thoughts,

Bet

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You are right about the doctor's,bless your heart and kidneys,I have to advocate for myself or I'd be dead by now !!!

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