Experiencing Pain

[LBatl]

I am on 5mg of Presidone, 1mg Tacrolimus am, .5 Tacrolimus pm and Cellcept daily and am experiencing pain in different parts of my body, ex. hand, fingers, feet, toes, arms, on a regular basis. I have discussed this with my Nephrologist however, he gives me the impression that as long as my kidney is working he's not concerned with my pain. I, to am very happy that my kidney is working fine but am concerned about this constant pain and wonder if anyone else is experiencing this issue. I will celebrate my 3 year kidney anniversary this Friday, (July 22)!

[MToQ]

Could it be fibromyalgia? I take similar amount of immunosuppressants and have horrible fibro. I get pain all over plus fatigue. But I also have a few buldging discs.

Try talking to your primary care doctor.

Must be frustrating not to know. Good luck! Congrats on 3 years!

[LBatl in reply to MToQ]

Thanks for your response. I am meeting with my PCP next week. Hopefully, she will have some answers.

[LisaSnow in reply to MToQ]

Sorry to hear. Did you already have fibromyalgia before ESRD and the transplant?

[LBatl in reply to LisaSnow]

No

[MToQ in reply to LisaSnow]

Thanks. Totally stinks to still have chronic pain but definitely better than dying

Think it started sometime during dialysis but didn't bother to get it diagnosed since it was just one of many pains. After my transplant, found the same type of pain persisted. Finally got it checked out and was told it was classic fibromyalgia.

[LisaSnow in reply to MToQ]

I understand. Fibromyalgia indeed can onset after major physical or emotional stressors. With major impacts of dialysis and transplant surgery on the body, it indeed can get ugly. I hope you find a good coping strategy for the pain and co-live with it in harmony.

[LBatl in reply to LisaSnow]

I'm wondering if it is fibromyalgia, I'll know soon.

[Hidden]

Hi LBatl. I am sorry to learn that you are experiencing such pain. It kind of takes the polish off of the renewal of life one feels after receiving a transplant, I imagine. I wondered if, by chance, you may take other medications and if there could be some sort of interaction happening as a result. Have you had a consult with the transplant team's pharmacist? Just a thought. Also, there is a lot if fascinating literature coming out on diet and the effects of certain foods and food additives on the body regarding inflammation. Just another thought. I wish you all the best as you seek resolution to this issue.

[LBatl in reply to Hidden]

Thanks, I will take another look at my diet.

[Eyak1971]

Prednisone has some likely bad side effects. Bone pain is one. Which is why many transplant patients do everything they can to get off of it, but some like me can not. According to what I research 10% end up with avn. Which I have. Had to replace one hip and am looking at another. Also ended up with gout due to high uric acid. Never had a problem before. My suggestion is go to a bone doctor to be evaluated.

[LBatl in reply to Eyak1971]

Thanks for your response.

[peregrin]

I would get a second opinion from an independent nephrologist.

[LBatl]

Thanks for your response.

[Camppy3]

I had my Transplant alittle over a year ago. I have been having muscle pain and joint pain all over on different days. We have changed the rejection medicines.changed cholesterol medicine. I still have pain, especially in feet and toes. Went this week to appt. And they lowered my cholesterol, we shall see. I am hoping it will straighten out.

[LBatl]

What are the rejection meds/mg you're taking as I'm having pain in the same areas you mentioned.