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Newly diagnosed with stage 3 kidney disease

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Willowby
Willowby

As from the title I am recently diagnosed with stage 3 kidney disease, my gfr is 56. I have been feeling off colour for a few years now with symptoms getting worse. I have weight loss, swollen ankles, shortness of breath, extreme fatigue, a need to pee all through the night, difficulty sleeping, Itchy skin, muscle cramps, headaches very clammy skin and night sweats, pain in right side front & back, potassium high. I have a problem with iron defiency and vit d defiency & my bp is very high at the moment. My gfr went down by 6 in one year don't know much about the years before. I suppose what I want to find out is how should my gp be helping me at this stage with all of the above. Has anyone out there maybe been in my position, or is in the same position that could help me.

I was diagnosed with fibromyalgia in 2002 but have always thought that the diagnosis didn't quite fit.

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  • kathi70354
    kathi70354 Willowby

    Posted

    Good Morning!  I have been away from this discussion for three months because at that time I started a change in diet (watching sodium) and drinking MORE water.  My neph prescribed one and one half liters a day.  In the beginning it was difficult to accomplish but now it is a daily routine. . .adding a squirt of lemon helps to get it down.  In addition, I limit myself to 1000 mgs of sodium a day.  After three months, I am proud to say, doing both brought my GFR from 32 to 39, creatinine from 1.59 to 1.33.  So, in answer to questions about can kidney function improve, I can say the water and less sodium helped me.  Most foods low in sodium are your fruits and vegetables so you also need to include foods high in healthy fats (avacados) if you do not need to lose weight.  I see my neph on the 12th and HOPE he will agree to take me off my BP med.  He has already cut it from 10mg to 5mg a day.  Hope this reply helps.  We are all in this together!!  
    • Willowby
      Willowby kathi70354

      Posted

      I try to drink 1 to 1.50 litres a day but I am not so good with salt yet, still trying though. It's good to hear that your GFR & creatinine have improved. I'm hoping mine does, just waiting for the results of last test.

    • kathi70354
      kathi70354 Willowby

      Posted

      I found putting the salt shaker down wasn't easy.  So, I went to the salt substitute and actually decided it wasn't too bad.  I had to look at ALL the seasonings I used, too.  Found many of them to be high in sodium so out the door they went.  Found MANY to use in their place.  Also, I never realized how high in sodium most salad dressings have.  Had to adjust that one, too.  

    • Willowby
      Willowby kathi70354

      Posted

      Thanks Kath. I didn't know there was a salt substitute I will definitely try it. I like all the dressings as well so I'm trying to find others for them. That's what is great about this site you can gain so much knowledge that really helps you. Fran

  • james37388
    james37388 Willowby

    Posted

    I'm on hemodialysis, so my stages have run their course.

    If I had a gfr of 56 I would be dancing in the street. I believe that you must get your blood pressure under control. The underlying cause of my kidney failure is uncontrolled high blood pressure. It will wear out your kidneys, your eyes and just about every organ in the body. I'm betting you get your blood pressure under control and everything else will fall into place. It is going to take some time, but it's worth it. I can tell you the alternative sucks.

    • Liliwen
      Liliwen james37388

      Posted

      Yes, it's like your age, you know you won't see the 40's or 50's again! I am puzzled about various symptoms people seem to be getting at plus 40 readings though, unless there is an underlying kidney infection I am pretty certain CKD does not present such symptoms until you are much,  I hope further down the scale. I am fatigued but I have a group of other issues so could not say if it is just CKD related but no pain despite dropping to below mid 30's recently. 

      James, I wish you all the best, do keep in touch. Best wishes to all who have posted here, the good news is anything above 40 is relatively good in the scheme of things, I suggest you all take care of your health, listen to your doctors advice and enjoy life. Often, CKD will remain stable for many years if not all your life as long as you all look after yourselves. Xxx

       

    • Willowby
      Willowby james37388

      Posted

      So sorry to hear your story. I do feel lucky that I'm not too bad, I just hope it continues. I've just had blood test results & my GFR has stabilised. Still having a few problems with bp though but the doctor is raising the amount of medicine I take. Hope you are ok.

  • Iluvbama
    Iluvbama Willowby

    Posted

    I'm not sure if you are still following this discussion or not, but I just got diagnosed with stage 3 ckd today and was doing some research and came across this discussion, and your question concerned me with your symptoms. You mentioned your fibromyalgia, are you being treated for that? And also have you been tested for auto-immune disease? Many of the symptoms you've listed are classic symptoms of auto-immune such as lupus, rheumatoid arthritis, sjogren's syndrome. A simple set of blood work will let you know fairly quickly. ANA, SSA, SSB, anti dna, and rh factor. I have all of the above auto-immunes, and have dealt the majority of the symptoms you listed. Also, if you still haven't yet, I urge you to get that blood pressure under control. I had a similar issue with high blood pressure. It was in the 200/120 range several times, I blew off the doctor. My vision changed, I went to the eye doctor to get a new glasses prescription since it had been a while, turned out, I didn't need new glasses, I had had a hemorrhage behind my retina due to the high blood pressure and wound up having to have a series of very expensive shots in my eye.

    • Willowby
      Willowby Iluvbama

      Posted

      Hi. I have been off the site for some time as I had a very busy spell and didn't have time to check my messages, plus I've been ill over the past few months ending up with pneumonia. I am being treated for the fibro but unforunately the one drug that helped the most which is ibuprofen is probably what caused the kidney trouble.  I've had to stop taking it which is now giving me quite a lot of problems. Still trying to find a safe replacement. The dorctors have checked me for some of the above but not everything My blood pressure is now under control with drugs so that's a good thing.I am waiting for the results of my latest blood test so fingers crossed. Sorry to hear about your problems hoping you are doing ok. 

  • richard87134
    richard87134 Willowby

    Posted

    Hello there, i'm at the same stage as yourself with a GFR in the 50 range. I have severe hypertension which is controlled with meds, loin pain, hematuria, folate defiency and extreme fatigue. It's just a monitoring unfortunately and they add meds as the disease worsens to counteract complications.

    • Willowby
      Willowby richard87134

      Posted

      Hi Richard. Sounds a lot like me. I've had loin pain for years now but they never seem to associate this with the kidney problems. I also get the exreme fatigue which is a real pain it stops you doing so much, suppose it could be worse though.Hope they are looking after you.

  • affine32198
    affine32198 Willowby

    Posted

    All - thank you for sharing your stories here. We are working on creating an app-based program for CKD patients to help them navigate CKD; help their caregivers and their physicians remotely monitor their health; and provide diet, coaching and other assistance through the app (video calls, CKD-specific recipes, exercise adherence etc.).

    If you are a CKD patient or a caregiver for a CKD patient, it would be great if you can fill out our 3-minute survey form at: ...This will help us improve our program based on specific patient needs, before we release it. As a thank you for participating, we will also be randomly selecting 3 survey participants to win $100 Amazon gift cards.

    Thank you for your time and we hope to work with you to make navigating and dealing with CKD a better process for all patients.

    Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

    http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • angie3364
    angie3364 Willowby

    Posted

    I know this discussion is old but I’m hoping someone will see this. I’m newly diagnosed as well with stage 3 kidney disease. My doctor told me I had stage 2 in 2014. Problem is none of my doctors told ME in 2014 that I have CKD. . So in 3 years I’ve gone from stage 2 to stage 3. Does this seem fast? Is that a normal progression?  They think it’s my Sjogrens attacking my kidneys. Does anyone else have Sjogrens and CKD?
    • frederick27437
      frederick27437 angie3364

      Posted

      Hi Angie I too have Sjogrens and had a problem with my kidneys recently where I was hospitalized for two weeks My creatinine rose from .87 to 1.97 and my GFR dropped from 92 to 35 suddenly after having a colonoscopy and drinking fleet phospho soda laxative I believe that caused the problem as two months later I am nearly back to baseline numbers Except for my tea which is alittle high and my parathyroid hormone is elevated as well 
  • karen49105
    karen49105 Willowby

    Posted

    I have stage 3 kidney disease and I have a lot of symptoms that my kidney doctor does not think I am able to feel yet.  I  am extremely tired all the time. So much so that my life is not even close to being the same as it was about 3 years ago.  The fatigue has taken me out of life.  I just want to stay in bed. I have to get up all through the night to go pee, but there’s not hardly anything there.  I get leg cramps.  I feel  nauseous a lot.  I also have had  fibromyalgia  for 18 years.  My sweat has an odor, as well as my scalp, different than a few years ago.  I get irritated so easily.   I am always in a bad mood.  I have become very  forgetful and confused.   I have also become very depressed.  The old scars on my skin are very dark and my skin is very dry and old looking (faster than normal). My fingernails are broken off and peeling.  My feet and legs get very swollen.  The nerves in my hands and feet are very jumpy and jerky.  I feel a lot of tension in my body, like my muscles are trying to draw up.  At times, water tastes sweet to me.  I have a horrible taste in my mouth all the time.  My skin breaks out with acne and sores that don’t want to go away.  I feel like there are so many toxins all in my body.  I am always in pain, I’m assuming it’s the Fibromyalgia. My general practitioner and three kidney doctors don’t think I can feel all the symptoms that I’m feeling.  

     They all believe that my GFR has to be down to 15 before I can feel the things I’m feeling. My kidneys started going bad about three years ago starting off with a GFR of 59.   My GFR is now at 48. I can’t get anyone to give me any advice on what I should be doing to prevent my kidneys from getting worse. I do not want to go into kidney failure. I don’t know how to get the doctors to believe me and take me seriously. This is serious.! This is what I’m feeling!   I really don’t know what to do at this point. I need help!

    • Willowby
      Willowby karen49105

      Posted

      Hi Karen

      I haven't been on the site for a while now but I've just read your post and really feel for you. I like you suffer from fibromyalgia which as we know has many symptoms. It is an awful disease which makes you feel really, really bad.It's very painful and makes you feel so tired. I also think it stops doctors from treating us properly as they put everything down to the fibro. I too have stage 3 kidney disease and have had the later stage symptoms like itchy skin, peeing every hour at night, bad taste in mouth, flank pain etc., but my doctor doesn't seem to want to know about this he says I can't be feeling these symptoms at the stage i'm at.

      I do know that ibuprofen taken at high doses over a long peroid can be the cause of kidney problems. I've had to stop taking them, even though they were the best painkiller I could take for the fibro. So if you do take ibrprofen have a word with your doctor about this and see if they can give you something else. Have they put you on amitryptilene for the fibro? I found that this made me extremely tired the next day so with the doctors help I've cut that right down also. I really feel for you as I know exactly how you feel. I just hope you can get some help. Keep pushing your doctor and tell him exactly how you feel. Good luck & let me know how you get on. I'm awaiting blood tests for my kidney function (with fingers crossed). Fran

    • marj01201
      marj01201 karen49105

      Posted

      Karen, I know virtually nothing about fibromyalgia but I do have chronic kidney disease and know that you can experience many of the symptoms you describe when in Stage III chronic kidney disease--I certainly did.

      You don't say whether you have had a renal panel run or not. If you haven't that would be a place to start. It would either confirm or disconfirm many potential issues with your kidneys. My physician also ran unrine analysis as well to check for excess protein in my urine.

      That being said, there are lots of medical conditions that can cause these symptoms. So when I was experiencing them I asked my physician to walk me through his game plan to figure out what was causing my symptoms. Then I worked with him to methodically work our way through the requisite testing to get my diagnosis figured out. 

      Best wishes,

      Marj

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