Feet pain post kidney transplant

[Ski573]

I am 2 months post transplant and I’m feeling good. I love to cook so I had my donor over for lunch and I cooked a bunch of food for her. I was standing for a few hours. I had such bad feet pain that afternoon/evening. It felt like it was radiating into my toes. Has anyone ever experienced this?

[Jepsos]

Not foot pain, but horrible hip pain. My other joints are hurting too, especially ankles and elbows.I believe it is the meds we are on.

[bluekidney]

Hi I’m 10 months out. I had the same issue with foot pain when standing, as well as terrible knee pain when it gets cold and groin pain near my transplanted kidney incision. I brought this up to my transplant nephrologist and he said it was most likely due to lack of movement. He mentioned that the muscles tend to cool and cause nerve pain. So he told me the best solution was to walk more and get more physical activity in which has helped me to a certain degree but when the knee or groin pain happen the only thing I can do to help it out is wrap myself in blankets and keep warm. This never happened to me before transplant and it can be debilitating when it happens to me and I have a very high pain tolerance. He seemed to brush off medication side effects but I agree with Jepsos it may be the new medication and our bodies are adjusting to it. Hope you find some answers.

[Ski573 in reply to bluekidney]

I’m so sorry you are dealing with this. Yes I am going to ask my transplant dr next week. The problem is when I have the pain the last thing I want to do is walk…. But get that I will need to walk more when I’m not in pain. Thank you for your response.

[Jepsos in reply to bluekidney]

Bluekidney, funny you mentioned wrapping up in blankets. I live in heating pads for the hip pain. It’s the only thing that relieves some of the pain. I have one in my living room and one in my bedroom. I have a high tolerance for pain, too. But, I wasn’t expecting this!!! I love to garden and am active. But the joint pain is really tough. My 91 year old Grandmother is doing better than me! 😏I hope as time goes by, our bodies will adjust to the new “normal”.

Good luck!

[bluekidney in reply to Jepsos]

I agree with you sometimes I feel like I have an older body and I just turned 36 the body aches, the hand tremors, and having a harder time getting around sometimes when the pain kicks in. Although I know I am still technically recovering from the transplant surgery. The new aches that come after transplant are very unexpected and no one really mentions that. I don’t remember reading on joint pain, muscle aches after transplant. I guess in retrospect I didn’t read up on life after transplant enough.

Hope that our aches get getter as time progresses. Wish you good luck too!! 😀

[BabyTee in reply to bluekidney]

I did a lot of research before my transplant. I researched both kidney transplant and kidney pancreas transplant, because I also got a kid/panc Tx 8 weeks ago.

My opinion is that they don't mention the side effects, because not everyone gets them, and they don't want us to think we have a problem we don't have. Part of the problem is if you don't know what to research before you know what pills you will be assigned, or what possible side effects there might be.

For instance, I had no idea that 75% of kid/panc Tx patients have low blood pressure for the first 2-3 months post-transplant, and for 10%, that continues forever. They have me drinking 2 cups of chicken broth every day, in addition to the blood pressure raising meds, and they want me to salt my food, as much as possible. After 10 years of keeping my sodium low, this is kind of hard to get used to.

Also, the Tx team didn't mention hairloss, until I was getting prepped for surgery and the social worker mentioned it, and said that if I get stressed about hairloss, they are there for me. I knew about it, because that is mentioned everywhere by women who have lost it.

I found this post, because the nerves in my feet have started twinging. I'll discuss with them tomorrow. I guess it might be the tacrolimus. Ugh!

[bluekidney in reply to BabyTee]

That is very true everyone has different reactions to the medications it’s hard to list any and all side effects which aren’t universal. I did find some articles where they mention tacrolimus causes joint pain in the lower extremities so I don’t doubt that’s what is hurting some of us. I continued to seek answers and my primary care doctor mentioned that it may be caused by low B12 levels she checked my B12 and it was on the lower side she put me on vitamin B12 and that has really made a difference for me. The knee pain is now more intermittent than constant and it’s easier to tolerate the pain and control it a little better.

Hope that you are able to get some help from your team and thank you for this additional insight we continue to learn from each other this really helps.

[MattR22 in reply to BabyTee]

I had my transplant 3 weeks ago and have had horrible foot and hand cramps that last for hours at a time. I initially thought prednisone withdrawal or tacrolimus, but it turned out to be low magnesium. So that may be something to consider as well.

[Kaylen_24]

Hello, I have been experiencing foot pain for years, since being diagnosed. I pray that it gets better after receiving a kidney. Praying for your healing.