Extreme Arm Pain at Fistula site while Doing Dialysis

[Strugglingthruthis]

Sept 9,2019 my husband was diagnosed with End Stage V kidney Renal failure. He had no symptoms or complications of kidney failure up until the blood test for a yearly check up with his GP. A year in to struggling thru this, we are at a point now, where he does dialysis 3 times per week in center and has a few side effects from the disease. The most recent one he developed about 2 months ago. It is extreme pain in his arm at the fistula site while doing dialysis. Pain to the point he explains it to me as, it feels like someone is sucking the inside of his arm out. This man has a very high threshold and when he tells me he was crying during his session today and cut it short for the first time because of the extreme pain, I know there has to be something going wrong here. Has anyone every experienced this kind of pain ad if so what was the outcome? If anyone has any suggestions for changes please let me know. The center has been trying different things but nothing seems to be working.

[cs65 NKF Ambassador]

I experienced nerve pain in the lower part of my fistula when staff tried to use that section, so I made sure that only the middle section was accessed since I also had a stent in the upper part. Also, I would ask about the rate of dialysis and possibly using smaller needles. Has your husband been evaluated about the need for a fistula gram lately? Treatment for a narrowing in the fistula can be indicated by excess bleeding after a dialysis treatment, having infiltrations (bruising and swelling at the needle site), inability to get blood flowing from a needle site.

[Strugglingthruthis in reply to cs65]

Thank you for the information.

[TheOther_MrsRobinson]

I strongly and firmly echo cs65 Strugglingthruthis .....the pain he is experiencing could most likely be infiltration, which causes extreme pain during treatment. He needs to URGENTLY see a vascular specialist, preferrable the one that made his fistula as they would be most familiar with your husband's fistula history, however, if the original fistula surgeon isnt available, your dialysis center should be able to refer you to one. If all this fails, he unfortunately should go to he e.r. and tell the staff he is having a dialysis emergency with his fistula and needs to have an emergency fistula gram, which will either confirm infiltration or another issue. Also, in the future, the moment he feels ANY discomfort he should have it examined then. I know all this is alot and may be new, but dialysis isn't supposed to hurt as bad as you've described, and difficulty in receiving treatment could turn small concerns into bigger issues. Hope this helps, and I apologize if I said anything here in a condescending tone. I hope your husband feels better soon and your nerves are soothed. Dialysis is alot to deal with, but proactivity does help ease toll just a bit, and any bit helps.

[Strugglingthruthis in reply to TheOther_MrsRobinson]

Thank you for all the information. This is his second fistula as the first one never matured like it was supposed to. We will be seeing his dr on Friday.

[WYOAnne NKF Ambassador]

You need to contact his nephrologist ASAP. That shouldn't be happening.I wound up having a AV Graft in my arm due to the fact they were unable to form a fistula. I still have issues with nerve pain. I think the arm needs to be looked at by the surgeon that put it in also. If it winds up all is fine, maybe he needs to start taking a nerve blocking drug like Gabapentin. Start with your nephrologist....

[Strugglingthruthis in reply to WYOAnne]

Thank you for your reply. We will be seeing his nephrologist on Friday.

[WYOAnne NKF Ambassador in reply to Strugglingthruthis]

Best of luck to you! Let us know how the appointment goes.Take care.

[Hidden]

I suspect a call to the vascular surgeon who created his fistula is very much in order. An ultrasound or Doplar could determine whether there is some problem going on in the inside of the fistula, some thickening of the inside wall, or twists and turns. Has he had any « infiltrations ».? That’s what it’s called when the needle isn’t totally in the vessel and blood or fluid is leaking out into the tissue. This doesn’t sound normal and needs to be addressed by the vascular surgeon team.

[Strugglingthruthis]

Hi everyone. So, we went to his appointment with his vascular surgeon, and we have also had ultra sound and vein mapping done on his fistula, they have found nothing wrong with it. They have also tested him for steal syndrome and that also came back negative. We are next going to have some tests done on his parathyroid glands, really not sure how they would cause arm pain but I will take anything right now.

[cs65 NKF Ambassador]

I had a kidney transplant last month and I couldn't take the usual narcotic painkillers without vomiting, so the doctors found a med for nerve pain called Gabapentin. I had no nausea or vomiting on that. I wonder if he has nerve pain (that would not show up on ultrasound). Try checking with his doctor for that or using different areas of the fistula for needle access.