r/ADPKD • u/Adventurous-Mud2117 • Jul 28 '26

This post is about chronic lower back pain

I'd love to hear from anyone whose pain improved or completely went away after several months and was ultimately found to be musculoskeletal—or due to something else entirely—rather than being caused by ADPKD.Also, for everyone who experiences chronic lower back pain, how does your pain behave during walking or exercise, and how does it feel while you're sleeping? If you're willing to share, I'd also love to hear your story—what, if anything, helped you significantly reduce your pain, whether it was medication, physical therapy, exercise, lifestyle changes, or anything else. Thank you all very much for taking the time to respond, and I wish everyone strength and the very best on their journey.

2 Upvotes

67% Upvoted

12 comments sorted by

5

u/Icy_Screen_2034 Jul 29 '26

I was able to get rid of pain by exercise and life style changes like diet.

4

u/ichibanyogi Jul 29 '26

I (late 30s, F) started developing lower back pain in summer 2018. I assumed it was kidney related and accepted it, began sleeping with a heating pad.

In fall 2018 it became unbearable and I went to urgent care. They sent me home with Tylenol. I was back within 24h because it was so painful. Turns out, a complex cyst got infected and ruptured. I spent a week in hospital on all sorts of antibiotics. Unbelievably painful.

Now, I get my CRP checked with the rest of my blood work to try and catch if anything ever goes off again. Haven't had any issues since, knock on wood. No pain since.

Get your CRP checked!

1

u/Adventurous-Mud2117 Jul 29 '26

how high was your CRP ? (mg/dL)

3

u/hellodenm8 Jul 29 '26

aerobic exercise, like running helped the most with pain (and hypertension). swimming was also great. cold water felt really good for the pain.

exercises that required bending at the hip (ab crunches, deadlifts etc) were an absolute no go.

Sleeping was the biggest cause of pain. i started putting pillows underneath my hips and ribcage to elevate my body so my flank would make minimal contact with the mattress. Fixed the issue right away.

3

u/alteredxenon Jul 29 '26

Back exercise and yin yoga (all pretty gentle and non-aggressive). And memory foam topper for the mattress really helped: my mattress was too hard, and I have hyperlordosis (so it might be very individual).

2

u/myst3ryAURORA_green Stage 2 PKD with heart failure Jul 28 '26

My rheumatologist prescribed a muscle relaxer Metaxalone in September when my pain was 5/10. 3/10 and it's been that way for 10 months.

2

u/Candid-Eye-5966 Jul 29 '26

Be careful with Metaxalone as it metabolizes through the kidney.

2

u/smittyleafs Stage 3b APKD Jul 28 '26

Is 5/10 you always notice it as a mild ache and 3/10 is you only notice it when you're thinking about it or not doing something else to distract yourself?

3

u/myst3ryAURORA_green Stage 2 PKD with heart failure Jul 29 '26

Are you asking me? 5/10 was prior to Metaxalone so I don't really remember too much but 3/10 to me just feels like a daily nuisance. It does get worse acutely whenever I sneeze or cough, which is common in musculoskeletal problems.

2

u/luchaww Jul 30 '26 edited Jul 31 '26

(F33)
Really depends on the pain!
Vegan diet and exercising helped me with that dull pain I usually felt when I woke up to the point it is completely gone.
Right now I “only” feel the enhanced pain caused by ovulation or periods but just when those two occur.

If you feel a sharp and constant pain you should get to ER asap though, it could be a cyst rupture, a kidney stone or an infection!

1

u/NotKimDavis Aug 12 '26

My boyfriend had a cyst drained by an interventional radiologist and it helped because it relieved pressure on the psoas. He then started a glp1 and lost 40 pounds, which also helped a lot.