Night Time Chronic Pain with PD

[louman1961]

I've been experiencing chronic pain at night in my shoulders, neck, back and left hip.
I found out last month that I have the start of osteoarthritis on my right shoulder and left hip.
I wake up about a half hour to an hour after I hook up to my cycler, with shoulder pain when I sleep on my side.
I make sure that my patient line is primed before I hook up.
I suspect that it could be bursitis, I will be getting a bone scan on Tuesday to see how healthy my bones and skeletal frame.
Would the % of diasylate solution play a factor, like 2 bags of 2.5%, it seems when I use a 2.5% & 1.5% I don't experience pain that much.
I'm relatively new at experiencing chronic pain, as I have a hard time coping and my anxiety has gotten worse and experiencing insomnia, and the dread of sleeping because of the pain!
On bad nights I get about 3 hrs sleep, and on good nights I get 7-8 hrs.
I've been sleep deprived for about 2-3 months now, since the chronic pain has started.
Writing this post now, I got 3 hrs sleep, it will be hard for me to cope with the day.
I would like to hear from any members of this message board, if they have had similar experiences, and share how they cope with chronic pain at night and insomnia.

[Kathymac2]

Hello louman,

I rarely sleep during PD. I am very lucky in that I have some residual kidney function, so I only have to do three exchanges per night over a six hour period. I hook up around 8 pm and and am finished by 2:30 am. I disconnect and go to sleep until around 7am. So I get about 4:30 hours of sleep per night plus an occasional nap during the day (I'm retired).

I don't have any of the pains you describe. I'm sure you have already tried getting a new pillow and a supportive mattress. Maybe a memory foam mattress pad would help?  I know how difficult it is to lie in bed and not be able to sleep. Could you fit a reclining chair in your dialysis room?  Maybe you could sit up and read/watch tv etc on those nights when you can't sleep.   

I wish you all the best. I wonder how many of us on PD are awake each night across the country?  Probably thousands. Lucky are those who can sleep through it all, wake up, disconnect and go on with their day.

[kickingandscreaming]

Are you sure you are properly flushing the line? What you describe sound like a bubble or too much air was left before hooking up.  The pain from air bubbles feels like shoulder pain.

[louman1961]

Hi Kathymac,
I also have residual kidney function, I have 4 exchanges over a 10hr period, I also have to use my CPAP machine for sleep apnea therapy while connected with the CCPD cycler.
I did buy a cool memory foam pillow which is smaller over my foam pillow wedge that has a cover.
It's a bit softer, I do not get as sore, but looking for a shoulder pillow online, that would ease and cradle my shoulder.
My CPAP sleep tech has suggested to me to buy a memory foam topper, that might help with my shoulder pain.
I did not have that much shoulder pain last night, I slept for about 7.5 hrs.
I think my anxiety over not sleeping and insomnia is contributing to my neck and shoulder pain, it seems when I relax and do some deep breathing and stretching exercises it alleviates some of the shoulder pain.
The calmer that I am during my bedtime routine, I also do progressive muscle relaxation before bed and incorporate it in my bedtime routine might help me cope better with the nighttime pain as time progresses.
I do like the freedom during the day to do my daily activities, that's why I chose to do PD for now.
I do have my ups and downs, but continuing to do PD therapy is not an option, but life saving!

[louman1961]

kickingand screaming,
I do properly flush and prime my patient line before connection to my PD cycler, I even have a note on my bedroom wall to remind me.
That was also suggested by my home dialysis nurse that I check for air bubbles in my patient line, and make sure that I prime my patient line before hooking up at night.
I did check last night before hooking up, and found no air bubbles, all clear.
I do have the beginning of arthritis in my left hip and right shoulder, that was detected in my latest diagnostic imaging scans.
I will be seeing my doctor later, and she will examine and assess me to see if it is arthritic related.

Would like to thank you for your suggestion to check for air bubbles in my patient line.

[Charlie B53]

I have chronic pain and muscle spasms.  Besides my pain meds I take one-half a muscle relaxer to help calm the painful muscle spasms that interrupt my sleep.

For a while I used a cup of Sleepy-Time tea.  I got it from Avon but alas, it's all gone.  I haven't found another brand that works as well for me.

[louman1961]

Hi Charlie,
Will have to try taking Sleepy-Time tea to help me sleep and make me calmer before bed.
I have found some available at Walmart: https://www.walmart.com/ip/Celestial-Seasonings-Herbal-Tea-Sleepytime-20-Count/16915155   

[louman1961]

I'm experiencing shoulder pain tonight, woke up 1hr hooking up to my cycler, it was going well for the past 3 days with hardly any pain.
I've been making an observation, I've been using a 2.5% Dianeal solution bag on the warmer( top) & 1.5 % Dianeal solution bag on the bottom shelf for about 2 weeks, and my shoulder pain is not that bothersome, and I'm able to sleep well and the pain is tolerable.
However, I ran out of 1.5% solution bags, and my new shipment won't be in until Monday.
I'm using two 2.5% Dianeal solution bags on top (warming plate on cycler) and bottom (shelf), where my shoulder pain is very bothersome, when I rest my shoulders on the mattress, it hurts when I have weight or pressure when sleeping on my sides.
Would the concentration of the two 2.5% Dianeal solution bags compared to using a 2.5% & 1.5 % lower Dianeal concentration have a effect and causing my shoulder to hurt more when I use the two bags of 2.5%? As anyone heard if this would cause pain when doing night PD?
I did check my patient line tonight, no air bubbles and I primed my patient line before hooking up.
I do use two 12' extension lines for my patient line, so I can move around my apartment and to my balcony to get fresh air and look out to calm myself, when I can't sleep due to the pain in my shoulders.

Today was a hot summer day and I did go for a longer walk this afternoon, and might have over done it maybe my chronic pain in my shoulders flared up and might be causing to have shoulder pain tonight?
Will be seeing my doctor soon to examine my shoulders, and possibly suggest or prescribe pain medication or a cortisol shot if my shoulder pain gets worse.
I did get a bone scan last Tuesday, the technician report is pending, they might see what is probably causing my shoulder pain and if it's arthritis settling in?
I guess many dialysis patients are experiencing chronic pain and dealing with some type of pain management with their doctor or physician.
Glad that we can support each other in this forum and share our experiences.

[Kathymac2]

Hello louman,

I've been thinking about your question if using two 2.5% bags vs one 2.5% and one 1.5% bag could be contributing to your shoulder pain.  I know that using the stronger solution causes an increase in ultrafiltration. Maybe the increased volume of solution in your abdomen from ultrafiltration causes pressure that expresses as shoulder pain?  The only way to test your hypothesis is to go back to using the 1.5% solution when it arrives and see if that makes the difference. 

So much of medical practice is trial and error. Unfortunately, we patients are the beta testers and we learn as we go what works best for us. My clinic recently changed the brand of island dressings they supply for exit site care. I had a very bad reaction to the adhesive in the new dressing and it took me almost a month to get the skin around my exit site back to normal.  Live and learn.

I'd be interested to know if using the lower percentage solution helps you with your shoulder pain problem.

[louman1961]

Hi Kathymac,
I did email my home dialysis nurse today about this, I mentioned to her that I seem to get less shoulder pain with the 1.5% & 2.5 solution.
I will have to do 3 more nights with 2 - 2.5% solutions bags, then on Monday night I will have my new shipment of 1.5% solution bags.
Hopefully my shoulder pain won't be bad as last night, I got 3.5 hrs last night.
Will let you know if the lower solution will lessen my shoulder pain.

I use Mepore bandages for my exit site care, they work pretty good and have no skin reaction.
https://www.amazon.com/Mepore-Self-Adhesive-Absorbent-Dressing-3-6/dp/B00DCMRAAG/ref=pd_sim_121_1/130-6057943-9213958?_encoding=UTF8&pd_rd_i=B00DCMRAAG&pd_rd_r=7c38631b-1334-4ca6-b04b-947f9ca53f62&pd_rd_w=dPMV1&pd_rd_wg=it2fC&pf_rd_p=90485860-83e9-4fd9-b838-b28a9b7fda30&pf_rd_r=NSP4FXF488CKRPMS0RCZ&psc=1&refRID=NSP4FXF488CKRPMS0RCZ

[Kathymac2]

Thank you for the link to the Mepore dressings. That must be the only one n Amazon that I haven't tried yet (ha ha).  I finally resorted to using a 4x4 gauze pad and taping it on with small pieces of Medipore cloth surgical tape.  So far that's working and my skin is healing. 

I hope you have a good treatment tonight without pain. We dialysis patients sure put up with a lot.

[louman1961]

Hi Kathymac,

[louman1961]

Glad that I could be of help in getting the Mepore bandages online. I did have a good night with a bit of pain. I must of been really tired from the night before not sleeping well. I managed to get about 9 hrs of sleep and woke up a bit later this morning. I guess I have to approach and realize that my chronic shoulder pain doesn't flare up every night. Like you mentioned we have quite an experience dealing with chronic kidney disease and dialysis. We cherish the good days and endure the bad days. Take care!

[louman1961]

Hi Kathymac,
I did receive my shipment of Baxter 1.5 % solution boxes yesterday, I set up 1-2.5% & 1.5 % solution bags last night.
I did not have that much pain in my shoulders, but a bit around the back of my neck and back of shoulders.
I slept for about 5 hrs, I had rebound insomnia, I'm trying to wean off Ativan because of the anxiety of not sleeping that I was experiencing about 4 days ago.
I've been struggling to sleep because of my shoulder pain and was sleep deprived for a while.
I got some good sleep that last couple of days.
I'm getting used to this chronic pain, now I have pain in my knees, I think arthritis decided to stay for good!
Hoping to see my bone scan results and report from last week, to see where other areas that arthritis is present in my body.
I have light spurring in my left hip that I know about.
I guess I have to adjust to the reality that I have chronic pain, as so many others who are on dialysis.
I will be a bit tired today, but will pursue my daily activities and going for a short walk after lunch this afternoon, and also meet my friends at the local coffee shop.
It's best to stay active despite living with chronic pain, doing light exercise such as walking is recommended for arthritis sufferers.
Have a good day!  

[Kathymac2]

Hi louman,

Thanks for the update report. I'm sorry you are still experiencing some pain. I know chronic kidney disease throws the calcium/parathyroid hormone balance out of kilter causing so many problems with the bones. As they say, if it's not one thing it's the other.

Good on you for getting out and walking. It's so hot where I live all we do is stay inside in the air conditioning.

Kathy

[louman1961]

Hi Kathymac,
I did not have a good nights sleep last night, more pain in the shoulders, and I had bad news earlier this week that my Uncle Raymond had passed away from cancer, he had been in remission for a couple of years now.
I think that might played part of a sleepless night, my anxiety came back with a vengeance.
I had 3 good nights sleep previously, it's kind of frustrating, I have to learn how to cope better, because my anticipatory anxiety is also playing a part of being tense in the back of the neck and shoulders.
I have a hard time letting go of the anxiety, it creates a whirlwind of emotions and trying to cope with all my health issues, being hooked up to the PD cycler, and also my CPAP machine to treat my sleep apnea.
Do you or others have any suggestions on how you deal with anxiety and stress issues?
I have to learn to let go and not worry so much and fear of sleep because I can't cope with my anxiety on some nights where I can't sleep!

[Kathymac2]

Well, first let me say I think it's great that you are able to sleep at all on both PD and CAPD.

When I can't sleep (most nights) I read, watch videos and play solitaire. I don't work any longer, so I don't really care if I can't sleep well at night. I can always grab a nap during the day if I have to.

If you slept better before doing overnight PD, you might want to consider doing manual exchanges during the day, leaving your nights free to sleep without interruption. I haven't tried that, but a lot of people do well on manuals.

If you have a good social worker at your dialysis center, he/she might be a good resource to talk with about your anxiety, or might be able to give you a suggestion for a good counselor if you think that might help.

You will figure this out. When I am in a difficult patch, I always think, next year at this time all this will be in my rear view mirror.

[louman1961]

Hi Kathymac,
I am seeing a counsellor about my anxiety over chronic night pain and sleep, she did give me a bedtime routine to follow every night before bed, by taking a shower, then I hook up to my cycler and take 100mg Trazadone for a sleep aid and it is used as a pain reliever.
I get very drowsy, then I go to bed, but on some nights when the pain is bothersome, I can't seem to take the pain, to practice meditation to release the pain.
I'm relatively new at this chronic pain, I guess possibly that I will be able to tolerate it, without getting overly excited and anxious about it.
I often let my anxiety take over, and that's not good to be able to go back to sleep.
She did tell me to play computer games, watch TV and read also, when I'm in pain, I haven't been comfortable in doing that, I'm too rigid in my thinking and think that I would not be able to go back to sleep. I guess I'm believing a bit old sleep myths that you need 8 hrs of sleep.
That's not realistic in my situation because it varies night after night.
I hope to be comfortable in doing the same as you when I can't sleep because of the pain.
I'm retired too and don't work.
I will look into the manual exchanges during the day, I'll see soon when my bone scan report comes out and see where the arthritic is in my bones.
I did have a short nap after lunch, that gave me a boost energy wise, I'm eating healthy and avoiding sugars today, Will also go for a short walk..Will take it easy this evening from 8-10pm and probably try sleeping a half hour before my usual bedtime.
Have a good afternoon!
Thanks again for your suggestions!

[louman1961]

Had a really rough night last night..did not get much sleep, my anxiety was extreme and I slept for 1.5 hrs.
Thinking of my past painful experiences when my shoulders are sore triggers my anxiety, I have to stop doing anticipatory anxiety, and try to live more in the moment being mindful.
I coped despite last night bad sleep, tired and anxiety up and down today.
Hopefully I will get a better nights sleep tonight.
I was pacing so bad in my small apartment, that I twisted my patient line extensions right up to my catheter, it was so badly twisted, that I had to finish my Baxter PD therapy earlier, because the dianeal fluid was not passing thru the patient line.

[louman1961]

Is there a way to make my patient line not twist so much?

[louman1961]

I have slept a lot better the last two nights, had about 7.0 hrs sleep both nights, the shoulder pain was tolerable.
I did listen to a pain release meditation on how to accept the pain, and go through it, eventually my body will adjust to the new reality that I have to live with this chronic pain.  Have to continue meditating and practice to lessen my anxiety which in turn will reduce the tension in my neck and shoulders.