Body pain in stage 3: Hi, I'm currently... - Kidney Disease

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Body pain in stage 3

oceansplash profile image
29 Replies

Hi,

I'm currently stage 3a and am having whole body aches in muscle and bone? Anyone have any idea what could be causing this? I'm mostly veggies with little meat. Thinking it may be a vitamin or electrolyte problem. Bloodwork good except a little high blood pressure. gfr 51-56. Thanks!

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oceansplash profile image
oceansplash
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29 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

HI Oceansplash, Body aches and pains may not be from CKD. It may be your diet and lack of nutrients. Have you had your Vitamin D level checked? Have you doctor go over your labs with you and look at things like B12, calcium and hemoglobin/ hemocrit and iron levels. These are measurements for looking for anemia. If they are low or off, they might be making you feel achy.

oceansplash profile image
oceansplash in reply toBassetmommer

Thanks, I just did basic bloodwork electrolytes fine, bun 11, five months ago did tests for all the others you mentioned. I'm thinking secondary hyperparathyroidism maybe? Doc's ordering this along with phosphorus - (usually they haven't been testing phosphorus for some reason). Have had constipation the last few days? I don't know. Just feel like I've been poisoned. Maybe I should take a uric acid test? Doctor has told me right along I shouldn't be having any symptoms of ckd at all. They look at me like I'm crazy, but this is not my imagination!!

Bassetmommer profile image
BassetmommerNKF Ambassador in reply tooceansplash

Don't let a doctor make you feel crazy. NO one knows you better than you. Hyperthyroid might make you feel that way. The phosphorous level and PTH levels and VIT D levels are all correlated. Even if the lab says the VIT D is ok, it might be low. See what the next set of labs show and talk with the doctor. If you hurt, there is a reason, but I doubt it is CKD. It took my 2.5 years for them to finally test me for Psoriatic Arthritis and when they finally did, my inflammation rates were off the charts. Keep fighting for what you need.

oceansplash profile image
oceansplash in reply toBassetmommer

Thanks for your reply. I did the extended Vit D test (Vit D, 25 OH, Total IA = 65, and 25 OH Vit = 25) Low 25 OH under 20 means deficient. Calcium at 9.8 last week's test. Phosphorus? - so I'm testing this and the PTH next week. Mag. o.k. etc.

So, I'm thinking (I don't want to believe arthritis!) it's my mattress which is old and cheap, and I recently changed sleeping positions from stomach to side (I hate it, but oh well). And possibly nightshade veggies because I've been loading up on pepper fajitas (no meat), eggplant, and the like. So, I'm trying plant based without nightshades which is very daunting because there is not much left to eat it seems! Oh of course and more stretching/exercise, something I have fallen behind on.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply tooceansplash

The Mattress is a big BIG deal. When you wake up feeling worse than when you went to bed and you are not rested, the lumps and bumps are no longer friendly, time for a new mattress. I am so sensitive to that I have extra pads or what they call mattress toppers on my bed that I change frequently to help from having to replace the whole mattress because they are expensive for a good one. But it is an investment in your health.

oceansplash profile image
oceansplash in reply toBassetmommer

I know!! Been telling my husband I need one. I'll pay for it! But I have to drag him to the store to purchase because if I don't and he hates it then I'd be hearing about it forever!!

Bassetmommer profile image
BassetmommerNKF Ambassador in reply tooceansplash

Take a look at a mattress topper in the meantime and see if that helps. They run from cheap to extreme, but much less than a new mattress. I only have them only have them on my side of the bed. Not sure if you shop Amazon, but it is a place to start looking.

oceansplash profile image
oceansplash in reply toBassetmommer

Thanks, but a new one is in order. I will get my way by hook or crook!! lol

Sophiebun11 profile image
Sophiebun11

Hi,

At Stage 3A it's unlikely those symptoms are from CKD. You could have Vit D deficiency or plain old arthritis, or even Fibromyalgia.

Most symptoms of CKD don't start until Stage 4 or even Stage 5. No pain and fatigue, but you can have increased urine and minor symptoms in the early stages.

See your PCP about your general pains.

Best wishes getting to the bottom of your aches and pains and getting rid of them. I'm stage 4 and starting to have fatigue and pain but it's bearable.

oceansplash profile image
oceansplash in reply toSophiebun11

Thanks, I'll be seeing my gp next week. I'm 60 yr. old always been active but have slowed down, since diagnosis 2 yrs. ago.

RoxanneKidney profile image
RoxanneKidney

Did you have a covid shot?

oceansplash profile image
oceansplash in reply toRoxanneKidney

Sorry, have to plead the fifth on that one.

oceansplash profile image
oceansplash in reply tooceansplash

But no worries here about a reaction!

drmind profile image
drmind

It sounds to me as if you're not getting the complete bloodwork that you need and as often as necessary. You mention getting two lab reports that were not for the same items and were several months apart. How can you determine if there are any changes? You also mention "secondary thyperparathyroid" and this involves abnormal levels of Vitamin D and calcium. Were these measured when you had your bloodwork? And, frankly, its disturbing to me that your nephrologist appears to be making light of your aches and pain. If it were me, I'd be looking to change doctors as soon as possible. Just because he/she cant figure out what's going on doesnt mean the problem doesn't exist. Something doesn't seem right with the care and treatment you're getting. Please keep us posted about your issues and let us know what's happening to get them resolved.

BTW my first nephrologist changed my BP Meds immediately when I began treatment and I was distressed that he ignored my reports of not feeling well as a result. To make a long story short, I wound up in the ER because the new medication caused urine retention and I developed a very serious bladder infection along with considerable leg swelling. That's when I started to advocate for myself and got a different nephrologist who incidentally is the best.

oceansplash profile image
oceansplash in reply todrmind

In the last two years I had blood work every six weeks until last Nov. Now every 3 months. No, not all tests were done each time. I'm sure they would repeat the test if the numbers were in question. I applaud you for becoming your own advocate. I too advocate for myself by ordering my own tests online when in doubt, reading countless gov. research studies (recent ones), and questioning my doctors. Still trying to find the best plant-based diet though.

Bond-007 profile image
Bond-007 in reply tooceansplash

Ocean, may i ask what medications you are on. & where the pain is located, what time it usually occurs, whether it is sharp or dull, and how long it lasts and it’s start date? Keep a pain log. For a plant based diet read “how not to die” by Dr Greger. Also “how to stop and reverse heart disease” by Dr. Eselstyne and “the china study” by Dr Campbell. Avoiding meat & dairy & eggs is the main theme. Get a full pcp workup and show the dr your pain log. It’s a start. Check for: fibromyalgia, cardiac functioning.

oceansplash profile image
oceansplash in reply toBond-007

Hi,Thanks for your reply. I have been following plant based while having an ounce or two of chicken or fish a couple nights a week. I'm not a tofu fan so trying to substitute other proteins.

I've had this bout of pain around 3 weeks ago for 3 days and this time for the last 4 days so far. Worse in a.m. eases up in afternoon but then gets worse around 5-6 p.m. It went away last time but is lasting longer this time.

Between possibly changing sleeping positions to eating a lot of nightshades I'm triggering something. Pain is a bad achey feeling all over. Like it's circulating in my blood. Miserable feeling. It may not be kidney issue but diet. I've read where even too many veggies can be toxic. So I feel like Sherlock Holmes trying to figure this out. Can't continue this way much longer as I am operating at about 20% right now. Just thought someone here might have experienced the same.

I've skimmed over the books you mentioned and they seem really good. Thanks. Dr. Greger has a great video I found in my google search.

drmind profile image
drmind in reply tooceansplash

Thank you for clarifying the issue about lab work and your advocating for yourself. Given all you do, it has to be so distressing not to get an explanation for your pain.

I share your problem locating satisfying plant food diet recipes and never stop looking. But, haven been a "meat and potato" person most of my long life making the shift is not easy. However, I'm trying. To start I've decided to be on a modified vegetarian diet that includes mostly veggies and fruit but also an occasional egg, low sodium cheese, or few ounces of fish or chicken. To keep up with the low protein diet, I make split pea soup and Lima bean +corn soup (from packages) Both are allegedly complete proteins. I keep searching for other recipes that have some protein so I can avoid anemia. Of course, based on my labs, I'm allowed to eat these items, but I'm sure not everyone is. I was told I need at least 46 grams of daily protein. I'm lucky I'd I can get 30 to 35 grams.

Best of luck with your pain and ache issues. I feel for you and hope a solution is found soon

Keep us posted.

oceansplash profile image
oceansplash in reply todrmind

I'm eating about like you. I wasn't counting the one or two grams from the veggies like salad, broccoli etc. I think if I start using the chronometer, I'd be surprised that indeed I eat more protein than I think.

I have taken amlodipine for years. The losartan gave me bad side effects at first. My neph said losartan had no side effects and to see a shrink! It's really helped my proteinuria though.

itzmich profile image
itzmich

Maybe it's a medication you are on causing the problem. Make sure you are drinking enough water and doing light exercize daily. The doctor works for you! Keep questioning.....or maybe see another doctor.

oceansplash profile image
oceansplash in reply toitzmich

Hi,Thanks for your reply. The medication losartan/amlodipine make me tired but no pain. I drink 8 glasses water daily. I am lacking in the daily exercise though. I'm totally unmotivated in that department. Walking and maybe light yoga? Guess I just have to push myself until it becomes a habit.

drmind profile image
drmind in reply tooceansplash

I noticed that you're taking amlodipine. This is one of the medications that the first kidney doctor prescribed for me long with Hydrazaline. Not sure which one or the combination sent me to the ER for urine retention causing a serious infection. The amlodipine also caused me to develop swollen ankles and feet, something that I never had in my entire life. Just passing this information along in the event it has some meaning for your case. Once again, hoping that a solution for you is found fast. Best always.

itzmich profile image
itzmich

I do water aerobics and that really helps and is fun. Still press your doctor for answers. Good luck.

oceansplash profile image
oceansplash

Definitely! I bought pool bar bells last summer. I live in the pool in the summer!

sparkie88 profile image
sparkie88

Gout arthritis vit K deficiency inflamation etc check with primary Dr also get a thyroid antibodies test and if possible a plastic in blood test. Finally GI tract and colonoscopy. If all ok then try Physical therapy and stretch.

oceansplash profile image
oceansplash in reply tosparkie88

Sounds like a plan thanks!

Darlenia profile image
Darlenia

In my view, it's very important to have a primary doctor in your life who looks after your entire wellbeing. In the world of medical specialization, physicians rarely look far beyond their field of expertise. Since your nephrologist has said it's not kidney disease, it's likely outside his area of interest, and that's your clue to seek a appointment with your primary care physician (PCP). In our case, our PCP serves as our coach and works with our care team. He's been instrumental in diagnosing and referring my hubby to a great cardiologist, gastroenterologist, nephrologist, etc. He sees their reports and stays current. Our PCP also routinely orders full lab panels and looks for new issues and then either treats or refers my husband as necessary. A caring PCP is worth gold. As we age, physical problems do pop up, sometimes out of the blue, but none of us can diagnose on this site. Your situation is a puzzle that truly only a professional can solve. Sending encouragement that you find a wonderful physician interested in your entire health, from head to toe, who can point you in the right direction. Life deserves to be lived well.

oceansplash profile image
oceansplash in reply toDarlenia

Well said and thank you. I'm making an appointment w/ gp as soon as possible.

Ziggydoodah profile image
Ziggydoodah

are you on blood pressure medication? I could hardly walk as the balls of my feet were agony at stage 3. Then my knees. I thought it was the steroids but turned out BP pills. Just a thought?

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