View from the Bed: How to Cope with PD Cycler Pain

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on April 30, 2020.
View from the Bed: How to Cope with PD Cycler Pain

A few months ago, I wrote a post about improving PD retention. Having seen many Facebook threads over the years across various groups, this time, I thought it would be useful to do a deeper dive into the issues of pain related to use of PD cyclers, to help clinicians understand how this pain affects patients and gather the tips PD users found helpful.

DRAIN PAIN

By far the most commonly-reported (and perhaps severe) PD cycler pain occurred during drains, particularly the first and last drain:

  • I laid on the bed just sobbing in pain. It’s hard to explain how bad it hurts at times.”

  • A hot knife being inserted into my lower parts.”

  • I woke up in tears 3 times last night. I am over being woken up every hour and a half. It freaking HURTS!”

  • It felt like the machine was sucking my guts out.”

  • It’s exactly like period pain initially. Then it feels like a tiny, powerful little bird pecking at my insides.”

  • Drain pain is one of the worst pains I’ve had! I’m almost 2 years in and set an alarm to wake me up a few minutes before every drain, because it sucks literally to be asleep and all of a sudden—WHAM—wake up thinking I’m being stabbed, and realize it’s just the drain cycle. I wanted to fight my machine.”

  • It’s like that miniaturized submarine [Fantastic Voyage] trying to get out.”

  • That’s why I’m on hemo now.”

Some patients reported wishing they’d been told that pain could occur, so it wouldn’t have caught them by surprise—and so they could make a more informed modality choice.

  • I was looking into PD and asked the nurse and ___ rep if there was any pain associated with it. Can you believe they both said “No”?! Liars!!! I expect the truth from my healthcare providers.”

  • Overall, I’m glad I went this route. I just wish it hadn’t been presented as ‘an easy, painless option.’”

A number of strategies were proposed to deal with drain pain, and I’ll list these from the least to most invasive.

Wait and See

One clinician noted that, “The cath is simply grabbing on to the tissue once all fluid is drained. Men also have a nerve ending in the bottom of their peritoneum that makes this so much worse for the first few months. I’ve seen grown men sit and cry it hurt so bad, but it does improve and a lot of times go away—usually by 4 months, but can take up to 6.” Personally, I’m not one to tolerate severe pain for 4-6 months—and this attitude may explain why people stop using a cycler for PD. (I also question whether men have different nerves than women.)

One patient’s wife also contributed, “He did have drain pain for the first month, but his body got used to it.” Since he wasn’t the one responding, I have to wonder.

Adjust Cycler Height

A relatively easy fix is to raise or lower the height of the cycler relative to the bed to find the “sweet spot”:

  • Keep the machine even with your bed. Mine was way too high for the first week or two, and then we lowered it.”

  • My fiancé had to raise his cycler somewhat higher than the bed. Now it’s mainly just the last drain where he has pain.”

Avoid Constipation

Patients noted that, “You can poop every day and still be backed up.” “Make sure your bowels are working well, and that will help the PD drain pain.” Home Dialysis Central has a Life@Home article about Constipation with a step-by-step approach and great tips.

Change Position

Some reported that a sort of “dance,” or shimmy, or changes to sleeping position helped to reduce—or even eliminate—drain pain.

  • I just had to lay on my left side, and it drains just fine.”

  • Lean to the left. Lean to the right. Stand up, sit down, drain, drain, drain!”

  • My doctor told me to change the direction of the extendsion, and it worked like a charm. Now, I tape the catheter down while sleeping.”

  • I massage my belly.”

  • I would pretend I was doing the hula hoop on my last drain. Dancing and gyrating my hips made a difference.”

  • I find sitting up helps.”

  • I would bend my knees toward my chest—think period cramps—with a heating pad on my back. Sometimes I slept with my legs elevated on pillows.”

  • Get on your hands and knees and sway from side to side and back and forth.”

  • My husband sleeps with a body pillow. He hugs it between his legs when the drain starts. He told me it helps a lot.”

  • I lived with a heating pad under me every night. I always had it on low, and when the pain would increase, I would turn it up, and my husband would gather pillows for under my feet.” (NOTE: Heating pads can cause burns.)

  • I started sleeping on the couch. Being a little angled/wedged in made all the difference in the world.”

Ask for a Prescription Adjustment

Various tweaks—from Tidal settings to slowing the drain by occluding the tubing—made a difference for some:

  • Tell your nurse. It takes a while before your prescription is perfected.”

  • Your doctor can set the machine so it will leave a small amount in (Tidal), so it’s not pulling you completely dry.”

  • Talk to your doctor about the pH level of your fluid.”

  • If the pain is unbearable and it has taken too much fluid off, you can bypass the last drain when you get the big tugging.”

  • Talk to your nurse about it. Sometimes if you close the white clip for a minute, move around, then open the clip again, it will feel better.”

  • I pinch my line for a second and it will ease up, and just repeat a few times.”

  • I pinch to stop and start the flow. Do it fairly fast. It helps make the tip of the catheter jerk a bit and kicks it away from what it’s pulling on.”

Adjust the Catheter

The most invasive approach to addressing drain pain—short of a switch from a cycler to manual exchanges—is to move the catheter.

  • One thing you can ask them to do is an ultrasound while you fill and drain. Sometimes this way they can see a problem that only appears during your treatment.”

  • It could be the catheter is up against the peritoneum. I had to get mine adjusted a time or two.”

  • They can reposition a catheter using a guidewire (rather than a surgery). It’s best to do this ASAP before it settles into position.”

  • I had to have two surgeries to get it right.”

FILL PAIN

Fill pain is discussed less often than drain pain—but is no less aversive:

  • I feel like I am going to explode when filling.”

  • Mine was so bad I had tears running down my face every time I filled. I called my bedroom the ‘torture chamber.’”

  • I feel like I am going to burst for a few minutes on the first fill, then it all finds a spot to disburse around my cyst-riddled very large kidneys. Next four fills, no problem.”

  • I had the worst pain while filling. It’s not similar to drain pain at all. Feels more like I got punched in the crotch.”

Various remedies were tried. A change of pH (by injecting a buffer into the PD bags) was not mentioned, but is also reported to help, though is a short-term solution due to the increased risk of possible contamination.

  • When I had pain during fill, it helped to recline or lay down. Also, I would stop for a minute and restart, and that helped.

  • Temporarily, I’ve closed the valve to have a break from the pain. I’ve also tried several positions. Didn’t work. There are times that I wake up from it.”

  • I was told that it’s just part of PD. Nothing they can do. I try to not to eat too much at night. That seems to help.”

  • If my fluid is not the exact temperature that I like, it makes my fills cramp bad!

AIR IN THE LINES

The shoulder pain that can occur when air is insufficiently flushed out of the PD lines is legendary among PD users:

  • It is the most Godawful pain. It’s impossible to do anything productive.”

  • The worst shoulder pain I have ever felt. I cried all night in pain.”

  • OMG, it’s killing me so bad. I have to drain and stop treatment.”

  • I can hardly get out of bed because of the shoulder pain. We are talking 10 out of 10 pain. Went for a little walk today and I cried from pain the whole time.”

Fortunately, many have found solutions that made a difference.

  • I lie down with my hips up on pillows, so my exit site is higher than my shoulders. The air bubbles migrate up toward my exit site in the first few minutes of drain. Once the bubbles are gone, I can lower my hips down.”

  • I lay down completely flat and raise my feet in the air. It works fairly quickly, but I stay lying down for 30-45 minutes to be sure it’s gone.”

  • I made big arm circles (like a windmill) and I swear it helped, and that I could hear little escapes of air.”

  • My son would vigorously rub my shoulder and I would rotate it. That seemed to work it out a lot quicker.”

  • I bought a hand-held heat massager and used it this morning. It took the pain away, and I didn’t have to wake my husband up crying because I was hurting.”

  • I was miserable for a week! I put a warm towel on my shoulder, and that helped a bit. I know check the machine and prime 2-3 times.”

  • Clamp off any unused lines really well, so faulty or loose connections don’t let air in.”

  • I bleed the air out of my bags by standing them up, and then the air gets sucked out during priming.”

  • Without a day dwell, the cycler can flush back on the first drain and any air pockets in the line can back-flush.”

  • I had this really bad. I would prime the lines twice, and nothing helped. Finally, I talked with my nurse, and since my clearance was great, we changed my first fill to a lower amount—just 10 mL. This was a game-changer for me!!! We started this a week ago and I have not had any right side shoulder pain since!”

  • Downward dog helps. I do it during a drain.

CONCLUSION

Drain pain, fill pain, and shoulder pain from air in the lines are very real day-to-day issues for some who use PD cyclers. I encourage PD staff to ASK patients if they have pain, and offer real solutions as one way to help improve PD retention.

Comments

  • Hagen

    Sep 12, 2023 4:08 PM

    Some patients reported to have less drain pain when they switched to Tidal dialysis. The drainage will not be completed, in the stomach remains 150-200 ml fluid. This could be enough that the tip of the catheter does not tough the peritoneal membrane, which has a very good blood and nerve supply. Please discuss this option with your nurses and doctors, it is possible with most of cyclers.
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
    • Dori Schatell

      Jul 11, 2024 10:53 PM

      Thank you, Hagen. Tidal is an important approach for easing drain pain.
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
  • Shawna Nuckolls

    May 28, 2023 12:07 AM

    Hi I’ve been on PD for almost three years. I did deal with drain pain but not so much any more, now what I’m dealing with is severe back and side pain where it makes it difficult to stand or do every day things. Has any one dealt with this and any suggestions for help with it?
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
    • Iftikhar Ali Gaur

      Jul 05, 2024 8:08 AM

      Hi Shawna
      My wife has been on PD for the last 10 years. She often encounters pain during the end of some of the drain cycles. We use two methods to relieve it. First, we stop the drain, wait for 5 to 10 minutes, and massage the area of pain to try to dislodge the catheter from its position. More Fluid accumulates in the cavity probably and the pain goes. If it does not go that way and the drain volume is equal to or more than the fill volume already then we bypass the machine to start refilling. Home this helps.
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
    • Jenn Ravert

      Jun 01, 2023 12:49 PM

      Shawna, Is this happening all of the time, or only during a certain phase? Have you had an x-ray to check for catheter position? Are you sure it is pain that is related to the dialysis?
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
  • Lorraine Jones

    Nov 16, 2022 7:43 PM

    This is my first week on dialysis and my first night was in agonizing pain! I felt as I was giving birth all over again! I could hardly move to ease the pain! During training a little cramping I was told to lean left, lean right and it moves!! Every hour and a half it's like get read to push! I lay in tears and pain every night! How can I live like this and try to work a fulltime job! I'm exhausted when I get to work! I've told my pd nurse and she's been trying to assist as much as possible, putting a call in to the surgeon today, hopefully some comfort will come soon!
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
    • Beth Witten

      Nov 16, 2022 7:54 PM

      I am really sorry that you're having so much pain doing PD using the cycler. Have you tried the suggestions in the blog and those that others suggested in their comments below? I'm glad that you've reached out to your nurse. Here's a recent blog about drain pain that has some of the same suggestions but may share others that you could talk with your doctor or nurse about. https://www.renalfellow.org/2018/12/02/lets-talk-about-peritoneal-dialysis-post-3-drain-pain-ouch/
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
  • Tue Wincentz Boas

    Sep 17, 2022 3:48 AM

    I get one jolt of sharp pain per infusion as well as when being emptied at start and end.
    It helps me to raise my upper body for the infusions, but I dont sleep well and after reading this thread is inclined to get my catheter adjusted/replaced or go manual.
    I value my sleep too much.
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
  • Joanna

    May 10, 2022 10:47 PM

    My dad has been using PD for two weeks now and drain pain has been a big issue for him. He told me that he feels like his rectum has being stabbed.

    We are using BAXTER HOME PRO CHOICE. As of this time, settings are as follows:
    Tidal/2000ml/5cycles/Dwell Time 1:35. Last drain 600ml.

    What were you experiences to improve this drain pain. Did you guys raise your machine or lower it?
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
    • Beth Witten

      May 11, 2022 11:09 PM

      Here’s a blog by a doctor about possible things to address. Hope you find something here. You might also call Baxter and talk with a clinical nurse educator. https://www.renalfellow.org/2018/12/02/lets-talk-about-peritoneal-dialysis-post-3-drain-pain-ouch/
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
  • Myrna Winslow

    Apr 22, 2022 11:52 AM

    This is my 5th night on PD. Last night I experienced the horrible shoulder pain I am now reading about. Tonight I still have what I thought was "residual shoulder pain"- it's about a level 5 but I also have upper belly pain - right under my breaststroke. There is so much they don't tell you. Part of me just wants to give up & let nature take its course but a bigger part of me wants to fight for my life. Can someone please tell me what Tidal is?
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
    • Stephanie

      May 28, 2022 7:18 PM

      Hi Myrna, I’ve been doing home dialysis now about 3 weeks. I also have that pain under my breastbone. It feels like I’ve been walking for 24 hours straight. The pain for me does not go away and I told my nurse and she started me on antibiotics. I’ve had the drain pain where it just paralyzes me and I just had my first shoulder pain today. That wasn’t so bad but the way I look at it is I rather deal with this pain then sit in a clinic 3 times a week 4 hours a day.
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
    • Dori

      Apr 22, 2022 1:49 PM

      Hi Myrna. I am so sorry that PD has been so painful thus far! Shoulder pain is typically from getting air in the lines. I'm honestly not sure about upper belly pain. Tidal is a cycler mode that leaves a bit of fluid in, instead of draining it all out. When you have drain pain, it can help. But what you are describing does not sound like drain pain. Please call your PD training nurse and tell him or her what you've been going through.
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
  • Ms.Dale

    Dec 01, 2021 2:04 AM

    I just found this site and TG! I drain 3x a night and every time, I have severe pain. I've been on PD for about a month, doing Tidal as suggested, but to avail.

    At least I'm not alone. My PD nurse was not focusing on my comfort.
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
    • Ms. Dale

      Jun 11, 2022 1:19 AM

      Thanks, Dori. #1 - I have changed PD nurses - much better attitude.
      #2. Had 2nd catheter put in. I didn't know that catheters come in sizes. I'm petite and have a short torso - so the 1st catheter was sucking on my lower pelvic area (genitals and rectum ) and causing severe pain during every drain.
      The new catheter is shorter, had less coils and I have had no pain whatsoever since the surgery. I'm grateful....
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
      • Duayne

        Aug 03, 2022 11:57 PM

        Hi Ms. Dale,

        First off, congrats! I am so happy that you were able to resolve your pain!

        My son (15) has been on PD going on 4 weeks now. He has drain pain daily with the 1st (always) and last (most days); sometimes very severe. He is on Tidal and I have the ability to bypass, which I use as needed once the drains come to a near stop. We have been thinking about asking our team about relocating his catheter or shortening it. Our biggest ?/fear is that if he has another surgery, how long does he have to wait until the catheter is healed enough to use it? We want to avoid a HD catheter placement for short term use.

        My question for you is, did you keep the 1st catheter in while you had the 2nd? If not, how soon could you use the 2nd and what did you do in the interim?

        Thank you, your story gives me hope!
        Duayne
        Reply to a Comment
        *All fields are required.
        Your email will not be displayed publicly
        • Melvin Copeland

          Apr 12, 2024 3:53 PM

          I had my catheter shortened about two weeks ago. they only shortened it 3-cm.. I still am having severe drain pain and am going to try some of the suggestions mentioned above. With that said, I am also thinking of getting a new catheter put in. Did they have a method of measuring where your new catheter we to be located? or was it a shot in the dark?
          Duayne,
          It took me a week to heal up enough to use my catheter after it was shortened.
          Reply to a Comment
          *All fields are required.
          Your email will not be displayed publicly
      • Dori Schatell

        Jun 13, 2022 1:48 PM

        Ms. Dale, you just taught me something new! I didn't realize that catheters came in lengths, either. I wonder how many of the surgeons or nephrologists who put in PD catheters are thinking about that?
        Reply to a Comment
        *All fields are required.
        Your email will not be displayed publicly
      • Beth Witten

        Jun 11, 2022 3:24 PM

        Ms. Dale - This is great news! Thanks for sharing that changing the length of the PD catheter eliminated your pain. You've demonstrated that one size doesn't fit all and how important it is to look at each patient as an individual.
        Reply to a Comment
        *All fields are required.
        Your email will not be displayed publicly
    • Dori Schatell

      Dec 01, 2021 2:06 PM

      I am so sorry that you are going through this, Ms. Dale, and that your nurse was not taking your pain seriously. Hopefully some of the ideas in here will help you.
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
  • Kellie

    Apr 30, 2021 3:07 AM

    My Machine is very loud i cannot sleep at all until my Cycles have finished which is 4.30am.
    Has anyone else have this problem?
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
    • John

      Jun 03, 2022 6:51 AM

      I’ve been on the Baxter Amia for 16 months and have the same sleeping issues due to noise and cycling. Then I sleep great during the last cycle or after I disconnect. What I would do for a good nights sleep!
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
    • Jackie

      Mar 26, 2022 5:06 PM

      I had the same problem. Mine malfunctioned so I was given another one-much quieter! They refurbish/reuse these things so it may old and somewhat tired.
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
    • Dori Schatell

      Apr 30, 2021 3:10 AM

      Kellie, your machine should not be THAT loud--it sounds as if you need a replacement (or earplugs!). Sleep is important. Call your PD nurse. If you are on Facebook, you may also want to join our Home Dialysis Central discussion group: https://www.facebook.com/groups/HomeDialysisCentral/
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
  • Dori Schatell

    Oct 29, 2020 6:07 PM

    I hope your clinic can help you. If you are on Facebook, we have a closed group for Home Dialysis Central, and lots of our members are on PD. https://www.facebook.com/groups/HomeDialysisCentral/
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
  • PG

    Oct 29, 2020 4:10 AM

    It’s nice to know I’m not alone in this. I’ve started to not want to fall asleep at night anticipating the pain that was about to come. It’s only been two months since I’ve started PD and I already want to quit because I don’t want to deal with the pain every night.
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
    • Dori Schatell

      Oct 29, 2020 1:37 PM

      You are most definitely not alone! I hope some of the tips in here will help you--and do talk to your PD training nurse about tidal or other ideas s/he has to help you. Some folks do switch to manuals and prefer them for this reason.
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
      • PG

        Oct 29, 2020 5:11 PM

        I go back to do my clinic on Sunday and I’m there a week for further testing. Hopefully they can figure something out. In the meantime I will try some of these methods from here. Thank you for replying, I don’t have anyone to talk to that fully understands.
        Reply to a Comment
        *All fields are required.
        Your email will not be displayed publicly
  • Adella Thorne

    Oct 15, 2020 9:28 PM

    Very helpful having trouble with the final drain will try some of the ideas also had a couple of low drain alarms
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
    • Rachel

      Aug 18, 2022 12:03 AM

      Hi Adella
      My husband also has had many alarms for slow drain. He sits up and moves around but we’re up like 2 to 3 times a night and that’s tiring. We’re only in our first week and the drain pain is horrible for him. I’m going to ask our PD nurse about the tidal. We were for warned of the drain pain. My daughter sent us this webpage and I am so glad. So much info here. Thanks to all
      Reply to a Comment
      *All fields are required.
      Your email will not be displayed publicly
  • John Agar

    Apr 30, 2020 10:31 PM

    An excellent and very helpful blog, Dori. We use a lot of tidal Pd to manage this problem if/when it occurs. It seems to solve the problem for most.
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
  • Gale Schulke

    Apr 30, 2020 10:03 PM

    Nobody should have to endure that kind of pain. How do you sleep when you anticipating having pain every time you drain. Honesty is always the best policy and we should always tell patients that drain pain is a possible complication and to let us know immediately so we can try to fix it.
    Reply to a Comment
    *All fields are required.
    Your email will not be displayed publicly
Leave a New Comment
*All fields are required.
Your email will not be displayed publicly