I am 44 years old and have been experiencing a myriad of symptoms for around 2 years now, primarily lower back pain and neck pain with muscle twitches all over my body. During blood tests, my creatinine levels were identified as 120 umol/L (egfr 64) Jan 2023 and 127 umol/L (egfr 59) Aug 2024 - the only blood tests that are at abnormal levels. I am UK based and doctors didn't even call me to discuss the egfr of 59, only leaving a comment on my health record to say monitor this annually with further blood tests. Around a year ago, I went to see a MSK specialist for back pain and he gave me injections in my back for Facet Joint Syndrome, these were ineffective and he suggested that I may have some kind of Arthritis. Since then, I have been waiting to see Rheumatologist to investigate potential arthritis and my question to the group is this really. Does anyone have any experience like this? Is my back pain and muscle twitches all symptoms of stage 3a CKD or is it more likely that I have a Rheumatological problem which is affecting my Kidney function. I am at a loss with this now. I feel pain and weakness daily, but doctors take bloods and say that everything is fine.....apart from an egfr of 59, and even then, that don't speak to me about that, saying they will have a look at it next year. Appreciate any insights you may have.
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Prepared1874
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I’m so sorry that you’re experiencing this. We can’t diagnose on this site. We can only give you our experiences. Firstly I’m not surprised that your GP has ignored your falling creatinine. It’s a problem many of us here have had including myself. It is essential to catch chronic kidney disease as early as possible as it can then be managed easily by diet alone for many years. There are other reasons for high creatinine though, if you’ve recently exercised before your blood test, for example. But perhaps your muscle weakness may have something to do with it. Don’t let the doctor fob you off. You need many more tests to rule out neurological conditions and autoimmune diseases to start with. Also an ultrasound of your kidneys. These are just basic tests. If your GP won’t order them then see a new GP. Two years of all over muscle twitching and pain cannot be from your level of kidney disease alone. If you even have kidney disease that is. The eGFR reading is an estimate taken from the high creatinine result. Please insist on some more testing to get the answer to your problems. At 44 you should be so much stronger. Take care xx
The e in eGFR stands for ‘estimate’ of the filtration rate. It is estimated based on the creatinine result as well as age, gender and other factors. As there are a few reasons that creatinine can be high, like exercising a lot before the blood test, the eGFR isn’t always accurate. Important to look out for a trend of it falling but yearly just isn’t enough. I’m stage 3A and have had my blood taken five times since diagnosis in December last year with another form to have it done again in two weeks time. I was already stage 3A for two years before I did research myself and actually told my GP that I had chronic kidney disease. She said ‘oh yes but it’s only mild’. I then switched doctors and have seen a nephrologist twice. They have both been very proactive. We need to speak up for ourselves and always ask for copies of our results.
Firstly, as others have commented, no surprise that medics seem unconcerned about early ckd. Most likely a combination of following their diagnosis guidelines and lack of confidence in their main "solution" of drugs. Yes, weve all had that response.
Youve basically got 2 choices for your overall health:
1. Rely on the NHS, resulting in various drugs for pain etc...and maybe ckd at a later stage.
2. See a qualified Nutritional Therapist.
My mum has adopted the Nutritional Therapy approach for her ckd3 over many years and found additional benefits eg lower BP (so weaned off a BP drug).
I cant help with 1 but can with 2, if youre committed. Its your call and I wish you luck with it.
My reply relates to treatment, not diagnosis, with Nutritional Therapy (NT) largely for chronic disease prevention plus some early stage disease treatment.
I agree that diagnoses are required and indeed Nutritional Therapists refer to medics for that, before therapy. As we know, a problem (at least with ckd, but also other diseases) is getting a diagnosis. In such cases, NT should start earlier to manage/slow disease progression.
Yes I agree with that. I was just making it clear as you said previously that you ‘basically have two choices’ where absolutely you can do or should do both
If by "do both" you mean get medical diagnosis - yes, do both. If you mean treatment - no, I disagree (at least initially) and didnt mean to infer that. I shouldve put OR between my previous 1, 2.
It would be confusing to suggest both and I'd advocate NT over modern medicine. If that didnt prevent worsening chronic disease, you could/should then revert to medicine which has its place for acute health conditions but doesn't prevent disease.
A relevant example to clarify. My mum's had ckd3 for 14y and only used NT to manage it. Its helped reduce her BP (enabling weaning off medication), thus preventing potential metabolic diseases. If her ckd worsens to the point that NT cannot help further, we would consider medicine (Ive already researched various drugs, in case).
Hopefully that's clear. Apologies if youre agreeing that its choice 1 or 2 (not both) but interpretation of brief responses can differ.
Some drugs do indeed have their place for some acute conditions. Pain is a good example. But big pharma has extended drug use much too far in the opinion of many, including myself. Even "2 paracetamols for a headache" is an example. We find that a drink of water can remove the headache as quickly.
I'm glad you've also been able to come off one (BP) drug - mum is "drug-free". I also believe that "kidney-friendly" diets are likely less nutritious than NT plans so less appropriate for early-stage CKD.
👍We plan to watch a film called "First Do No Pharm" this weekend which illustrates the problem that's grown out of all proportion. The title is a play on medics supposed declaration at the outset of training "First Do No Harm" which sadly has got lost due to big pharma commercial pressures etc.
The thing that gets me, is that in the US, many of the Big Pharma executives are former politicians. I listened to a fascinating Joe Rogan podcast where he had a man named Brigham Buhler who owns ReviveRx, a small pharmaceutical company that is the complete opposite of the big pharma companies, and the things he talked about were absolutely horrifying when it comes to how big pharma and the government operate. It’s episode #2208 on Spotify if you care to check it out.
You’re welcome. It’s both fascinating and sad. But on the bright side, there are some people out there that actually care and are trying to heal people. He also owns a regenerative care clinic called Ways2Well. We need more people like him in this world!
I'm so sorry to hear you're going through this! It sounds like you're feeling frustrated and worried about your symptoms and test results. From what you've shared, it's possible that your kidney function could be contributing to your back pain and muscle twitches, but it's also possible that there's an underlying rheumatological issue at play. I'd recommend pushing your doctors to take a closer look at your test results and symptoms to get a clearer diagnosis and treatment plan.
I had terrible back pain, twitching before I was diagnosed. I was back and forth to my GP for months getting tests. I kept getting told, everything is fine and we will just keep repeating tests. I then recieved a call from a locum. He had accidently read my file and couldn't believed I hadn't been referred to a consultant. I was at stage 3a at that point. It infuriates me. When I read about people trying to get a diagnosis. There is so much ypu can do in the early stages. I put all my faith in my consultant and was put on a huge dose of steroids. Which resulted in almost a year of pure misery. Huge weight gain, joint pain and hair loss. It did nothing to help my condition. I was put on blood pressure pills that also caused awful issues. I then started asking about plant based diets etc and basically I was laughed at and told diet wouldnt make any difference. By then I was so far down the rabbit hole, nothing seemed to make a difference. I am now on dialysis. My advice to anyone experiencing the same issues..be proactive. Ask for all your blood test results. Do not just take their word that everything is normal. Have you had your iron, vitamin D and B12 checked. Then you go through every result and research it. Then change your lifestyle. Start eating healthy. Check your potassium levels. If they are high, start a reduced potassium diet. I really wish I had done all this at the beginning. Keep asking questions and jeep checking your test results. All the best and I hope you get answers soon
Im glad you posted here and asked us to share our experiences. However, you need to be more proactive with your medical people and ask them to explain the symptoms that you're having. The You .may have to change doctors if that's possible.
Oops. I hit "reply" too soon. Anyway, your symptoms seem genuine and should be addressed. From your comments. It appears as if your doctors are not paying attention to your concerns. Im so sorry you are going through this and hope you can speak up again and get some results. Best to you and keep us posted.
I have seen a Neurologist and had an MRI of head, neck and lower back which returned degeneration of cervical and lower spine but no issues with my nervous system. I have also seen an ENT as I have swallowing problems and regular tinitus in left ear, they suspect that muscle tension in my neck is pressing on nerves and potentially causing those issues. I have seen a MSK specialist who gave me 2 injections in my lower back, to no avail. I have seen 6-7 different GPs and had countless blood tests. Of which, only my Vit D was low and Creatinie is high. I now take super strength Vit D and this hasn't really made any difference. I wake up every morning with a stiff lower back and neck and muscle twitches in legs, arms and torso. I suffer headaches every day and I am now concerned that I can't take Naproxen or Ibuprofen as they can do further damage to my Kidneys, when they did actually help in the past, and I can also confirm that I don't live on these drugs. I try to get through the long periods without taking anything. All symptoms are pointing towards extreme muscle stiffness, tension etc. Exercise does help with some of the symptoms, however, I cannot always Exercise as I am regularly not well enough to do it as I am so fatigued. Yesterday was a bad day, I had tremors in my hand which I could also feel throughout my torso, neck and head. This in turn makes me so tired that I struggle to operate. I try to walk 8k steps a day and wish I could do more but this is just a grim situation and unless doctors see an indicative blood test, they are not really concerned. The only concerning blood result I do have (high creatinine) they just say, come back next year, we will have another look at it. I've gone private now so will get things moving quicker as the NHS just sees me as a 44 year old with OK(ish) bloods.
Thank you all for your comments. I have an appointment now to see a Rheumatologist in the coming weeks, although it may be wise for me to see a Nephrologist also, just to rule out one or the other. As I say, it's not clear to me if my low egfr is the result of an autoimmune issue or if my back and neck issues are a result of CKD. I was fit and healthy prior to this kicking off in late 2022 which was shortly after my a bad bout of Covid. One GP suggested that may have triggered an autoimmune response, which ties in with my younger brother and sister both having autoimmune diseases. I've also read that some autoimmune problems can cause kidney damage, like lupus for example. I'll keep you posted on my progress.
I feel for you. Keep working towards a diagnosis. Kidneys generally reflect an underlying problem. The two largest drivers of kidney disease are high blood pressure and diabetes but, indeed, there are many others as well - autoimmune conditions, med toxicity, genetics, polycystic disease, viral illnesses, etc. Apparently, too much physical activity, or not enough of that, can influence kidney health too. It makes my head spin. I hope you find answers soon.
One thing that I haven’t heard you mention was if you have been checked for sleep apnea. I too have aches and pains (like I’m coming down with the flu) and fatigue most days. I wake up tired and achy. It never seems like my muscles recover fully. I have done all the tests, even rheumatology, and nothing. I was at stage 3b (eGFR at 34) and my nephrologist said that my symptoms shouldn’t be from my CKD and suggested that they may be caused from sleep apnea. She said it sounded a lot like sleep apnea symptoms. I did a home study that showed I had moderate sleep apnea when I sleep on my back (which I would have bet everything I owned that I didn’t sleep on my back ). I am going to have a clinical sleep study done to look into it further. Your story sounds a lot like mine.
I'm not a Dr. But CKD is called a silent killer for a reason. I don't know of any symptoms for someone with a eGFR of 59. I have CKD AND age related arthritis in my hands and facet joint deterioration in my spine and avascular necrosis in my knees and ankles from prednisone. Non of my Dr. have suggested any of my joint pain is connected to CKD. There are things connected to CKD that usually show up as CKD gets worse. Things like anemia, high phosphorus, high potassium, and PTH thyroid issues. BUT even those standard related conditions are not universal. Since my CKD is from dehydration my potassium is usually low, not high. I try to read as much as I can, from reputable medical studies and online sources to learn about my various conditions. Many GPs don't do much when someone's eGFR goes down. Nephrologists - kidney drs- don't even want to see your until you get close to dialysis levels. Most of us have had to take personal control of our health. There are no cures for CKD, but you can slow the worsening of CKD with dietary changes.
You mention being tired and Vitamin D issues. Anemia is very common with CKD. Have you had those tests? Also, our PTH impacts the absorption of Vitamin D. Regular vitamins won't help. I take a prescription for activated D. There is a good explanation of the PTH issues and CKD at the Kidney Fund site - kidneyfund.org/living-kidne...
Again, I'm not a Dr., but it sounds like you have multiple issues and one isn't necessarily related to the other. That has been my experience.
The two aren’t necessarily related despite the similarities in time of onset….my CKD resulted from 10 years in the US Army from ‘85-‘94 and the army docs love of the wonder drug of the time, when both Vioxx and Celebrex came to market…NSAIDS were the new miracle cure…as a leader and member of a M-1A1 Abrams tank company as platoon leader, XO and acting CO I was on and off the tank…young and in-shape I’d just jump the 9’ to the ground form the CO’s hatch…running in boots, playing college football, being an active young adult I’m sure caught up to my joints if not me…but I wouldn’t change anything….i digress… in fact unless you’ve lived with RA for awhile it’s generally not associated with immediate kidney issues…eventually CKD can and the scientific evidence is unquestionable and will lead to (if you live long enough) kidney failure, dialysis, and transplant if young and healthy enough to qualify…the British system is typically British tough and it seem the qualifications for the stage 5 necessities of dialysis and transplant are difficult…Thus preservation of current kidney function is key…I believe SGLT2’s are available as a CKD treatment in the UK and EU…the benefits of Farxia, Jardiance etc of stopping CKD progression is now well documented starting with the EMPA-kidney trials in 2017-2021….my best advice for you would be to take control of your health as no one will better advocate for you then you….if the doctor is incompetent find a new one and keep moving on as a bad/uniformed/unwilling to co-manage your kidney issues (as a partner rather than a dictator) with you and keep up with the new developments coming at 1-2 year intervals instead of 15-20 year intervals as in the past has offered the first hope I’ve had in years…no one will care about you health and your disease more than you and if the doc isn’t able to get on board get a new doc…too many out there refuse to keep up and IMHO it’s borderline malpractice…while I’ll take the majority of the blame for my near death in 1996, the idiot ER doc who stuck a tap to drain almost 70 pounds of fluid off my belly is responsible for my AKI/multi-organ failure and hear 7 month ICU stay. Doctors generally are decent some are even excellent but most are too interested in their money/practice/earnings etc and are doctors to enrich themselves not altruistic patient care. Oh to answer your firect question I suspect the two issues are unrelated just had common occurrence dates, but I’m not a doctor, go find one you can trust and my best to you.
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Newbie with 58 egfr… what next?
MY CKD JOURNEY..FROM EGFR OF 11 TO EGFR OF 84.. FROM AKI 5 TO CKD 2.. STRUGGLING WITH LOW SODIUM LEVELS.
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High Potassium Level
