Wondering how to handle pain when you shouldn’t take NSAIDs

[PepperJack]

Would love to hear how you’re dealing with pain when extra strength acetaminophen/paracetamol just doesn’t cut it. After an unexpected diagnosis of 3b CKD, my nephrologist is telling me to avoid NSAIDs. Unfortunately, several other health conditions find me in daily pain that isn’t managed with other OTC medications. I’m curious how others are dealing with a similar situation - thanks in advance for your input!

[Sapphire187]

My nephrologist told me the same thing about NSAIDS. I’m stage 5 and use Tylenol Arthritis (650 mg acetaminophen per tablet). That usually works for me.

[PepperJack in reply to Sapphire187]

I was so hopeful that the arthritis strength acetaminophen would work, but the maximum daily dose just doesn’t get me through an entire 24 hours. 😟

[orangecity41 NKF Ambassador]

I sometimes use Tylenol, but in general does not do much. My pain is due to neuropathy and I use a nerve cream that helps.

[PepperJack in reply to orangecity41]

My pain isn’t a neuropathy issue, so topical medications aren’t really an option. I’m so glad you’ve found something that helps you, though!

[CuriousCKD in reply to orangecity41]

Would you give me the name of the nerve cream, please? It may be helpful to me as well. Thank you.

[orangecity41 NKF Ambassador in reply to CuriousCKD]

It is Nervive Pain Relieving Cream

[CuriousCKD in reply to orangecity41]

Thank you!

[orangecity41 NKF Ambassador in reply to CuriousCKD]

If you have neurologist, check with them on it too. I checked with mine but was not familiar with it.

[jodaer]

What kind of pain and where is it? Have you tried acupuncture? Massages work well. If you can find one a Bowen therapist is great. There are different kinds of pains and one treatment does not fit all.

[PepperJack in reply to jodaer]

I’m mainly dealing with muscular pain, as well as post op pain (knee replacement) and joint pain. (My rheumatologist is watching me for rheumatoid arthritis, as I have an increasing marker for that in my blood.) Thanks so much for your suggestions.

[jodaer in reply to PepperJack]

Have you ever tried China Gel for your pain? It's a cream and it works great for sore muscles and arthritis.

[PepperJack in reply to jodaer]

I see the main ingredients are camphor and menthol - I’m going to compare the percentages to the multiple joint/muscle creams and roll-ons in the medicine cabinet! Thanks for the suggestion!

[lawntonmedicals]

I'm sorry to hear about your challenges with pain management. Many find relief through alternative therapies like physical therapy, acupuncture, or certain prescription medications that are safe for kidney health. It might also be helpful to explore lifestyle changes or consult a pain specialist for tailored advice.

[PepperJack in reply to lawntonmedicals]

Thank you so much for your thoughtful post. I actually just spent some time with my primary care physician discussing the options several days ago, and come away from that appointment with some hope!

[nonna70]

I have bone and joint pain because of cancer treatment. I talked to my pharmacist. She suggested a turmeric supplement. I think it helps. If it's placebo, don't tell me!

[Reese4 in reply to nonna70]

Not a placebo nonna70! It works for me. Also CBD seems to help too.

[PepperJack in reply to nonna70]

I’m so happy it’s helping to alleviate your pain! All the best to you in your cancer journey. xo

[drmind]

If possible, consult with a pain management specialist. As someone already said, there are different kinds of pain from various sources. I also believe that there are some prescribed medications that are relatively safe for use by kidney patients. Wishing you luck in finding some relief.

[PepperJack in reply to drmind]

Thanks so much for your input. I actually had an appointment just days ago with my PCP to discuss all this - wishing it was a “quick fix” situation rather than trial and error!

[lowraind]

Arthritis strength tylenol and Tramadol help me in the a.m. when it is very difficult to move.

[PepperJack in reply to lowraind]

I had an appointment with my PCP several days ago - he’s having me try Gabapentin first, and mentioned tramadol as the next step. So glad it works for you!

[Beachgirl32]

sorry for your pain I only take tynenol I have a lot of pain from my polycystic kidneys my cyst push on other organs . I have a giant heating pad and lots of hot bath that help me. My brother did acupuncture he said that really work for him

[canadaeh in reply to Beachgirl32]

Hot baths are increasing my itch problem

[PepperJack in reply to Beachgirl32]

Thnks so much for your input. I couldn’t live without my heating pad! ☺️

[barbara55109]

In the US, prescription pain relievers are very difficult to get because of the opioid epidemic. I have a Tylenol 3 script, however it does nothing. It is available OTC in other countries. When I bring it up I'm told to take tylenol. I have HOLES in the bones of my knees in addition to arthritis. Movement hurts, but it hurts less than no moving and then trying to move. I try to remember that. I use ice and heat sometimes to distract me from pain. the Orth Dr. suggest CBD creme, but since I'm on the transplant list I need to check with them first.

[PepperJack in reply to barbara55109]

I’m so sorry you’re dealing with so much! Pain can suck the joy right out of life sometimes! Here’s to better days! xo

[barbara55109 in reply to PepperJack]

Thanks

[Silkdog]

Has anyone used Salonpas Pain Relieving Patch and did it help to ease the pain? I hard good and bad about them but won't mind trying it.

[OldTownhammock in reply to Silkdog]

Dud nothing for me except roll up

[orangecity41 NKF Ambassador in reply to Silkdog]

I tried it , but my nerve cream works better for my pain due to neuropathy.

[Silkdog in reply to orangecity41]

I just tried it last night and it did nothing for me at all. The pain is still there. I researched the differences between "sore" and "pain" and I think mine is a combination of both. The condition seemed improved a little bit, maybe over time, it'll go away eventually, fingers crossed.

[orangecity41 NKF Ambassador in reply to Silkdog]

It took a week or so using the cream before I felt improvement in my neuropathy pain.

[Silkdog in reply to orangecity41]

While I do understand it'll take some time to see any benefits, but I do expect to see at least a little improvement. And it does have quite a strong menthol/minty smell.

[PepperJack in reply to Silkdog]

I’m afraid I’d have to wrap my entire body up into one patch! 😆

[Hidden]

I use a heating pad on affected kidney side, CBD-A if really intense pain (over 5 on pain scale), guided imagery and ASMR, and Reiki treatments. All work, but CBD-A increases heart rate and BP at times.

[03Springer]

it’s a difficult topic as we all know. Lifestyle is huge for me, we are what we eat. Depending on the pain, there are various foods that give us a little for what we need. If not already, and depending on the source of your pain, look for anti inflammatory foods or foods that may be contributing. Tylonal works sometimes. Stay positive, I’ve learned that the pain gets me depressed not being able to do anything for it and things that normally and easily would help, I can’t take.for me, that’s sometimes worse than the pain, so make sure and have your support person on hand to talk to.

[OldTownhammock]

CBD gummies help at night

[2GOB4]

I am just about at the same point. I’m being told to stop my long time use of NSAIDS. I have degenerative arthritis that first began in my late 30’s in my lower back. Over the years it has affected so many areas that only treating the body as a whole helps. The worst areas have been corrected or replaced when steroid injections failed to provide relief. I have set up my first appointment with a nephrologist and I am now fluctuating between 3A & 3B along with finding out I am pre-diabetic and have osteoporosis too. I’m finding it difficult to know what direction to take. My current thoughts are to cut NSAIDS dosage in half or maybe 750 mg to 500 mg twice a day with dietary changes. I do not wish to use any habituating pain medication for chronic pain as I am looking ahead at cervical fusion surgery from C3-T2 to stop worsening pressure on my spinal cord in the spring. Feeling discouraged too but unfortunately no helpful suggestions to offer.

2GOB4

[PepperJack in reply to 2GOB4]

I’m in a situation much like yours…. CKD at the same levels as you, multiple joint replacements, and daily systemic pain. I was just recently diagnosed after an entire summer of high Motrin intake following my knee replacement. I have a follow up nephrology appt and new labs next week - but I’m trying to maintain on extra strength Tylenol and 1 dose of 400mg Motrin late in the day and hoping the much lower dose will be reflected in an improved eGFR. My pcp just gave me an rx for gabapentin to see if that might help with pain relief (despite the fact that I’m not dealing with nerve pain) - we’ll see how that goes.

All the best to you as you deal with the challenges of pain- filled days. I’m right there with you.

[2GOB4 in reply to PepperJack]

Thanks for the reply. I’m also using gabapentin 100 mg @ night. Helps with sleep but can’t take it during the day due to drowsiness. The plan was to use it 3 times a day and increase dose gradually but it’s not working out that way….

[PepperJack in reply to 2GOB4]

I’m also trying to acclimate to the Gabapentin - it makes me so fuzzy headed (a challenge at work!), but it sure makes for a good night’s sleep!

[canadaeh]

My kidney failure was put down to topical prescription Diclofenac use. I work with paon specialists who use live camera directed injections including but not limited to cortisone. I also get live camera nerves ablation, where they burn the nerve in my neck to interrupt the pain cycle, that was causing the pain visible as arthritis pinching a nerve.I still have to take prevailing for leg cramps,

[PepperJack in reply to canadaeh]

Wow! I hope you’ve found some real relief with such a high tech treatment! That’s amazing!

[drmind]

I also had a nerve ablation several months ago to relieve back pain from spinal stenosis. It worked for me. I still have aches from bending but no sharp pain anymore. See a pain specialist who does the nerve ablations. Fairly easy procedure. I was fearful about it, but it went smoothly and only took about a half hour. The only pain during the procedure was momentarily from sticking needles [6] in my spine. Wishing you the best in getting a handle on the pain.

[lawntonmedicals in reply to drmind]

Thank you for sharing your experience! It’s reassuring to hear that the nerve ablation worked well for you and that the procedure went smoothly. I appreciate the advice about consulting a pain specialist—I'll definitely consider it. Wishing you continued relief and health!

[PepperJack]

Thanks so much.

[Hope1999]

Has anyone tried topical Arnica gel for pain. I use it for my special needs daughter who has ckd and severe low back pain including spina bifida occult, bilateral pars defects at L4,5 and S1, and sciatica. She also has neuropathy in her feet and hands. The arnica gel helps with the burning and pain in her hands and feet. I also use lidocaine patches on her lower back. Her pain management dr prescribed oxycodone 10mg and Gabapentin 300mg . I give those to her twice a day. Her nephrologist had said she cannot take more than 600 mg of Gabapentin a day. I also use Tylenol extra strength other times. The Arnica gel also helps the arthritis in my hands when I use it on her feet and hands. We use diet to keep her kidney function in check/ from worsening. I hope our regiment helps someone else.

[Hope1999 in reply to Hope1999]

Also she gets transforaminal injections and sciatic injections under sedation about every 5 to 6 months.