Fistula pain

[barbara55109]

I've had a fistula for 2 years. I have NOT started dialysis yet. My GFR has stayed in the mid twenties, a surprise to all my doctors. In the meantime my hand gets numb and tingling sometimes. Yesterday something new happened. I had a few powerful sneezes in a row, thank you spring, and got a sharp pain in my fistula at the peak point of each sneeze. What's up with that?!?

[Bassetmommer NKF Ambassador]

Tell your doctor about the numbness. It is called Steel Syndrom – this is the result of your fistula depriving the area below it of blood, it can cause your hand and fingers to feel cold and painful or numb. Occasionally, this can lead to more severe symptoms such as ulceration and inability to use the hand due to pain. If steal syndrome is going to occur it usually develops soon after your fistula has been created. Sometimes, this may reveal itself once dialysis is commenced. Please make your dialysis nurses and doctor aware if this occurs so it can be treated if necessary.

kidney.org.uk/fistula-care#....

[Ziggydoodah]

Hi Barbara. Im on Haemodialysis and got my fistula fitted over a year ago. Been on dialysis for the past 11 months. My fistula was fine and working well. However since Christmas, I have been having issues with numbness and tingling at night, to the point, I cant sleep. The only relief I get is hanging my arm out of the bed and feeling the blood rush back to my hand. I also sometimes get a sharp pain around my fistula area. Despite telling staff, about it, they are not concerned. I actually argued with the nurse practioner. She has carpel tunnel syndrome. She insisted this is what I had. I told her it was to with my fistula. Even the designated fistula nurse was blasé about it. After a lot of nagging, she said to she would mention it to the surgeon. I now have an appointment with my surgeon on the 10th May. I experience steal syndrome, when I'm outside and its cold. My fingers on my fistula arm, turn dark blue, almost navy. I can only describe it as severe pins and needles, to the point it is is extremely painful. At the same time, its as if im wearing an invisible glove that is pulling the feeling from my fingers. Please keep an eye on it. As my pins and needles started off gently but has gotten a lot worse at night. I will try and reply to you and let you know the outcome after I have visited my consultant. After all my ramblings, my point is....tell your consultant and if it get worse, make sure they investigate it. All the best.

[Okiksaints1955]

Hi Barbara,

Just to clarify - you had fistula for two years and never used it and your egfr is 20. If so, shouldn't it be considered removing it for now?

My egfr was 8 when my nephrologist asked me to make my choice (as per our schedule) to provide my choice - dialysis or transplant. I chose the later. It took another 6 months and my egfr finally dropping to 5, when we did the transplant.

Not sure if this helps - but it is my personal experience.

[barbara55109 in reply to Okiksaints1955]

I'm on the transplant waiting list. The wait is over 6 years. I have at least three more years wait. Doctors were all convinced my egfr would continue dropping and dialysis was imminent. Since my CKD is from dehydration from my ileostomy doctors just don't know what my prognosis is. They guessed wrong, but it is highly unlikely I will stay in the 20s forever.

[KidneyCoach NKF Ambassador]

On first reading your post without finishing it my thought was "carpal tunnel". This is exactly what I did for years (and I had fistula/graft). I would hang my arm over side of bed for severe nerve pain relief. Which fingers are most bothersome, first 2 fingers and thumb or pinky and ring finger?? It may pinpoint the issue. Blessings