Understanding pain post transplant

[Saaya]

Hi,

It's been one year I got the transplant. I am experiencing pain on my right side back from shoulder till leg and back (no pain on the right stomach area where operated) if I do more physical work or if I even sit for longer time. Does anyone experience such pain? When I chk with doc he says it's normal and nothing to worry. But am concerned. Please share ur thoughts. Thank you 🙏

[6V53]

That doesn’t sound normal to me. It also doesn’t seem like it would be related (I am no expert and cannot feel what you feel, so take this with a grain of salt). I have a neuropathy that is painful, a burning pain, on my leg. It gets worse with activity. For me standing too long flairs it up. I know I tend to tie everything back to my CKD, but now and then I find new things crop up that are not related. The only other thing I can think of is that maybe a nerve was pinched or otherwise injured during surgery. Either way, it might be good to ask for a consult to a neurologist.

[Saaya in reply to 6V53]

Thank you for replying. Yes, booked appointment this week will check again and will check neurologist.

[Oceansideup]

I am not experiencing pain like this. That said, I agree with 6V53. Persistent pain that is predictable doesn’t sound normal. Whether it’s nerve pain or stemming from something else, it’s important to understand in order for you let go of your concerned about it.

You did not say what, if any, explanation was given to you about the possible origin of your pain. Perhaps asking more questions would help? Keep asking til you get answers that satisfy you. It may help the doc to know the frequency and severity of your pain too, although you may have already shared that.

Sorry you are going through this. So frustrating. Hope you get to the bottom of it soon.

[Saaya in reply to Oceansideup]

Thank you. Hoping for a permanent solution. Will meet neuro. Thanks for your suggestions.

[WYOAnne NKF Ambassador]

It could be nerve pain, but that is usually in the area of your transplant. I had entrapped nerves after my surgery and also wound up with a hernia. Depending on nerves involved you could feel it in different areas, like your back and leg. Probably best to go see a good neurologist. They can test nerve conduction, etc. I had issues with my L arm, where I had my AV Graft for dialysis. For me it was all nerve pain. Dr did surgery making the canal the nerve is in larger. Solved my problem.

[Saaya in reply to WYOAnne]

Sure will do. Thanks for replying.

[Seanthesheep]

Hi Saaya. Had my transplant almost three years ago. Had some pains and numbness for around 18 months but all cleared up now. Good luck. Sean

[bluekidney]

Hi Saaya,

I too have had ongoing pain issues, back, flank groin area near the transplant, abdominal pain both sides. I have been to different specialists and no one knows the cause of my pain. My PCP prescribed Vitamin B for nerve health that seemed to help for about 2 months and then I started experiencing pain again. My neurologist said all my nerves were healthy. I wish they had answers so I am continuing to search for the cause of my ailments. I hope the neurologist can help with your pain. Good luck to you.

[Camppy3]

I am a little over getting my transplant. I have experienced pain through the year. Medicine was I think my reason. They put me on Tacrolimus and Cellcept at first. I had a lot of adjusting of meds. I have had neck stiffness, back, arm, leg, feet pain(not all at same time). My left foot I got a stress fracture , never had. On my right Morton's Neuroma, never had before.My feet ache sometimes too. I feel it is getting better, they said that it would take a yr. To get ironed out. I just wish they would of told me more of what to expect after. If worried make an appointment with Doctor or talk to Transplant Coordinator.