Hi, I’m Gavin. I have recently been diagnosed with CKD stage 3. I have joined the group to get more information and support.
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Hi,
Very new to this,I have been told about my kidney disease in November last year, I am now at stage 4 with an egfr of 16, really hoping to find some advice along the way
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Hi @Gav! I really hope you find this a useful space to get more information. Is there anything specific you’re looking for? 
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Hi @Debs! Thanks so much for joining Kidney Community. How have you been coping the past few months since your diagnosis? 
Hi Brogan,
Not particularly well to be honest, you don’t realise until you have been diagnosed how it can affect you mentally aswell as physically.
Trying to find out information about diet is so confusing one says you can have this then somewhere else you can’t but I have settle on nhs websites and will be pushing for a dietician at my next appointment.
Thankyou for asking
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I’m really sorry to hear that it’s not been a easy time for you! Diet really is one of those confusing topics, and a lot of other Kidney Community members also find this too.
Some others have popped in some really useful tips and their go-to’s here, which might be worth checking out:
Hi,I’ve just been diagnosed with chronic kidney disease state 3.I also have high blood pressure.I’ve recently noticed loss of feeling in toes and pins and needles in feet plus swelling,is this unusual?I’ve had no help from my doctor,just told to cut out salt.I would appreciate any advice please.
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Hi all I’m.new to been diagnosed with CKD around a month ago . This weekend my whole body hurts. My back is killing me. Feel like I’ve got man flu. So my question is. is this the CKD. Starting.. as I’m new to this .
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Morning all. I’m Izzy. My daughter is CKD stage 5, on dialysis 3 times a week, Diabetes type 1 for most of her life, also she has Carpel Tunnel and Charcots foot, as well as mental health issues. She has been on the Kidney/pancreas transplant list for 19 months now. I support her as best I can.
I have been turned down as a kidney donor due to Rheumatoid Arthritis and age! My other daughter has to lose weight to be considered as a donor and my son can’t donate due to diabetes. Anyone else find it really frustrating that they can’t help?
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Looking for people around my age (27) to speak to. Drowning in my own thoughts with everything going on. Mentally not coping at all, just interested in how it affects others mental health? Stage 3 chronic kidney disease, type one diabetes and very anaemic
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Welcome to Kidney Community @Cath1!
Swelling and tingling sensations are certainly a symptom of kidney disease, so please be reassured that it is certainly usual to have this. In terms of diet, a lot of our Kidney Community members have popped in what tip and advice they have here:
Your top tips for eating well with kidney disease
I hope reading through these will help!
Brogan
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Hi Brogan,
My workplace has been incredibly supportive, but I know in most corporate spaces there is a lack of understanding and awareness of kidney disease which is isolating for many.
Workplace culture in many places must change positively to allow patients the confidence in maintaining their careers, financial stability and normalcy without facing potential negative stigmas.
I have been fortunate enough to be able to work with management and ensure a proactive plan that accommodates hospital appointments, fatigue breaks and emergency contingencies for dialysis or hospital stays when/if they emerge.
Alleviating workplace stress on managing kidney disease helps immensely. But, even with great support in the workplace, navigating the daily reality and symptoms of kidney disease will still remain a constant firefighting struggle that is almost always fought in silence by many.
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Hi @DavidKnight6801!
Welcome to the forum 
Flu-like symptoms are indeed similar to that of having CKD: extreme fatigues, weakness, loss of appetite and even achy muscles.
Hi Izzy! Thanks so much for joining us here at Kidney Community and for sharing your difficulties.
I know you won’t be alone in feeling frustrated and helpless, but your support to not only your daughter but your whole family will go such a long way. Just know that we’re here for you through this tricky time .
Brogan
Hi @Sophiebowie! Thank for your post here on Kidney Community .
I’m so sorry to hear that you feel like you’re drowning in your own thoughts, but just know that so many people here will be able to connect with your journey and understand what it is you’re going through.
Is there anything in particular that is on your mind that you’d like to ask about?
Brogan
Hi
My son is recently diagnosed at age 15 with idiopathic primary FSGS. Not in remission yet. I know everyone is different but has anything worked for you?
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Hi, I’m K-Ann. I just turned 50 year’s old. I’ve been newly diagnosed of CKD. Had proteinuria since about 10 years now after having lots of diagnostic tests of MRA, MRI with contasts, and CT angiogram, treated with gama knife radiotherapy from cerebral AVM/ brain hemorrhage ×2. From this then, protein in the urine, then diagnosed with IgA Nephropathy and then the Nephrologist diagnosed me with CKD. I am on Dapagliflozin tablet for treatment 
I want to be here in the community so that I will be informed and widen my knowledge about the disease.
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Hi everyone. I’m 47, a mum of three from Mid-Kent with ADPKD, which runs in my family. I’m now at stage 5 CKD. I was preparing for a kidney transplant when I was diagnosed with cancer last year, so the transplant list is postponed for another 3 to 5 years. I’m finding the side effects of chemo, long-term hormone treatment and ckd quite challenging. The combination of fatigue, aches and the day-to-day impact of both conditions has been difficult to navigate. I’m currently trying to decide between peritoneal dialysis and haemodialysis, although I’m leaning towards home HD. It’s been a very lonely journey, and I’m hoping to connect with others who understand what this is like. I’m here to learn, hear about your experiences, and pick up any advice that might help along the way.
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Hi I’m Tracy nice to meet you all!
I’ve been diagnosed with CKD 4 but now fluctuating 3-4 which is good.
I was sad to hear that I have had this for 8 years and no doctors told me. It was only because I became seriously ill last year.
I’m scared I’m not being looked after as I should.
I’m in Suffolk.
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Hi Everyone, im sam, 34 from Kent. I have stage 3 CKD, diagnosed in 2019, had a kidney removed in 2021. Looking forward to hearing all your stories too a d how people manage, any tips or advise? Thanks
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