I have been following this forum because my mom had to start dialysis. I find it so interesting but also quite perplexed of all the issues that so many people have with dialysis. You are all amazingly strong people who are so willingly to help others. It’s so gratifying to know that other people are willing to help those with problems.
I am not writing for myself, but trying to find information for my mom who has been on dialysis for a year now. She is 86 years old and suffers from chronic renal failure. When diagnosed years ago, her comment to me was that she would never do dialysis. She was faithful in following doctor’s orders and her diet. She did manage to avert dialysis for six plus years, but at the end of March 2017, her numbers were so low she had absolutely no energy, no life. She gave in and started dialysis. It’s been a long, hard adjustment for her, but the life is back in her and she wants to go places and do things. There’s only one major problem. Most days she has pain develop in her fistula arm during her dialysis treatments. Sometimes it just stings but more than not, it’s a very intense pain that develops. She has convinced her doctor that she cannot tolerate the pain so her treatments are for only 3 hours and 15 minutes (which she doesn’t mind but would like to shorten up even more!). She even told her doctor that she doesn’t mind the dialysis procedure but dreads coming because of the pain. She has asked other clients at the dialysis center if they have pain such as hers in the arm, but there is no one. We have been back to the vascular surgeon and has had ultrasounds to see if her veins are of correct size, mapping of her other arm to see if it would support a fistula, and fistula grams done to see if there’s any blockages and normal maintenance, all with no success of finding the problem to alleviate the pain. We found out that her right arm is good for a fistula, but the surgeon believes she still would have pain no matter where it would be placed. He said her pain is real, but it’s the way in which her brain processes it. I say this because there are people (my siblings and dialysis staff) who believe the pain is in her head. She does put lidocaine on an hour before the actual needle pokes, but when the effects of the medication wear off, her pain seems to start. Just last week she was prescribed lidocaine patches which seemed to help one day or else it was just a good day which are far and few between. My question to this group of is there ANYONE out here who’s had arm pain during dialysis. ANY information would be of great use as I continue to try to find a way help her be more comfortable in this lifesaving process.
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I use the lidocaine cream myself, which helps when they insert the needles. To me it sounds like they're putting the needles in too close to nerves. I have had intense pain when that happened and the tech took the needle right out and tried a different area. That's the only thing I can think of. I'm so sorry she's going through this. Take care!
Also there is such a thing as referred pain. My mother had this when she had cancer in her bones. The actual pain comes from a different area but the nerves refer it further on down your arm, etc.
Is she resting her arm on a pillow or a warm blanket during the treatment? At the beginning I would lay my arm on the armrest and it would begin to hurt from being stretched out straight. I find if I keep it bent at a slight angle on a pillow or blanket it feels better.
She rests her arm to the point of it being rigid. She does need to relax more. Your support is immensely important and I think she'll listen to what others like her have said. Thank you so much for your help.
Maybe her problem could be some anxiety or fear about the pain. She could ask the nurse or doctor to prescribe something for that. It also might help if she could do things to take her mind off of dialysis while she's there. Does she read, watch tv, do crosswords or word search or play computer games? Or would she rather sleep (benadryl can help her sleep).
Yes, I do (raising hand)! After many years I've decided (after consulting doctors, nurses and others) my pain during dialysis is from holding my arm still in an unnatural position. My muscles spasms some days in that arm. I've found that using a pillow or even a folded up towel, neck pillow of any type has saved me from stopping treatments. Your mom may have to experiment with a few pillows until she can find the one that works for her. And after a few months she may have to change it again. It has made a world of difference to me. Also try applying the lidocaine cream up to 2 hours prior to sticking and cover with plastic wrap until the sticks. I've personally never used the lidocaine cream or injections. I don't find the sticks nearly as painful as having my arm/shoulder in a confining position. Also try some tylenol (check with doctor) about an hour prior to beginning of treatment and see if that helps. Let us know how it goes. Best wishes & Blessings
I am so glad to hear your response as well as cs 65's response about moving the arm. I've told her she needs to move it, but she is so afraid of the pain that she is very hesitant. She even asked the vascular surgeon if she should move it, and he said no, but I'm sure he meant not to move it excessively. I even demonstrated to her the way she could move it just so that it wouldn't tense up, but she said I didn't understand! Other clients at the center move around but she is pretty much rigid! I am going to read the comments that I've received to this post so that she knows what others in "her shoes" are saying. Your support is immensely important and I think she'll listen to what others like her have said. Thank you so much for your help.
I just thought of something else. I developed a frozen shoulder which was very painful for several months until I saw my primary care practitioner and got a a referral for physical therapy. With doing the exercises over the course of a few months I have gotten a lot of my range of motion back - moving my arm across the front of my body is fine, but I'm still having pain moving my arm across my back. I believe the reason I got the frozen shoulder was by deliberately not using my fistula arm for lifting and carrying, but now that I think about it the way I held my arm out during dialysis could have had something to do with it. I was overly afraid about hurting the fistula, but it is ok to lift and carry smaller weights and to do stretching and strengthening exercises. I am only 66, but I think this applies even more as you get older. Good luck to your mom!
I frequently have pain with the needles because of my fistula. My sticking area is rather limited because I have 'walls' that developed in my fistula. It looks like twists and turns in that huge vein! I have to get an angioplasty or thrombectomy every time I see the vascular surgeon. I'm prone to stenosis so I have to go every 4 months. Maybe that's what is going on? Also we use EMLA cream which is lidocaine/prilocaine mix. You put it on an hour before and wrap saran wrap over it after applying so it doesn't rub off on to your clothes. May help better than patch. Best of luck to mom!
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