Re. Tremors. From time to time my arms jump. I am on ccpd. This will happen once a month or every 2 months. It will start on Thursday and last untill Monday. I went for a blood test on a monday and I had no problem. My MD told me that it is just PD!

I might want to see a neurologist to see if he/she can do tests to determine what’s causing it. I never heard that complaint from a PD patient before and I worked in dialysis for over 16 years.

Here’s some information from MedlinePlus, a government website, on muscle twitching:

There could be other causes, including a pinched nerve or a nerve disorder. Did your doctor test the sodium and magnesium in your blood? If either of these values is low, it can cause muscle tremors.

Beth, if that’s as uncommon as you think it is, it is no wonder my doctor and the PD dialysis nurses seem to turn a deaf ear to my complaints of dialysis causing twitches. At first they were few and far between, but then so were my first PD treatments, two or three days a week at the dialtsis clinic. Then I got home dialtsis, slowly the twiching progress. All this time the doctor and nurses were telling me it’s the toxins in my body. At first I believed that as I had no reason to doubt as they were the professionals. However I didn’t do the dialysis as frequently as they wanted and insead of every night for 8 hours, ( I couldn’t sleep through the drain pain), I would do it every second day for four hours, it’s seemed to be working for me, my toxin levels were slowly going down I felt pretty good for about two days, the I started twiching and thought uh-oh my toxin levels must be going up, so I would do another dialsis session. I seemed fine until I laid down, and this uncontrolable twiching began, further blood testing show my toxin levels dropping further, in all fairness some were still high. Although toxin levels were dropping the twiching worsened. The doctor made mention my toxin levels were going down on each visit, however he blamed the toxins for the twitching and put me on more dialysis, 8 hours on the Cycler, and 12 hours with the gravity bags the ones where you hold it for 4 hours each bag. I now twith uncontrolably even when sitting now, more so when doing the dialysis. I also get very little sleep due to it and find only a sleeping pill does the task of putting me to sleep. There was a time when I went 4 days without dialysis, I was able to sleep very well and easily and the twitching had stopped The only reason I’m on this fage is because I’m doing dialysis now, and as the dialysis fluid flows into me the twiching increases, so much I couldn’t sleep. In fact my legs have been trembling and twiching all through the writting of this message. I believe the Original author of this post as rare as something like this may seem to the trained profeesionals, dosn’t eliminate the possibility that PD dialysis may have such adverse effects on some people. I kmpw I’m starting to get frustrated trying to get my dialysis staff to listen to my serious complaint. It may be cleaning the toxins from mu body, but it’s making me twitch, where I never had a twitch before this cafiter. which seems to be causing another problem I care not dicuss in this forum.I think it not quite right to have suggested a neurologist to Anonymous, as I woudn’t suggest one to you, I just think maybe a more open mind to new possiblities would be more appropriate.

In 18 years of working in dialysis I never talked with a patient who experienced twitching on PD.

Unless you have significant remaining kidney function, you are risking your health and your life by skipping so many treatments. I can’t imagine how you could have good labs skipping so many treatments unless you always do your dialysis consistently before you have your labs drawn. I suspect if you had skipped treatments before you had your labs drawn, you would see reduced dialysis adequacy. The blood that is drawn for PD adequacy reflects recent removal of toxins, not how your PD adequacy was for the whole month.

Since you believe the twitching may be related to PD, to rule out whether you may have an allergy or sensitivity to the dialysate or the bags or tubing, I’d call the company that provides your dialysis solution and ask to speak to a clinical educator. Ask him/her if anyone else has reported your symptoms and, if so, what they did to control them.

Medications can have the side effect of twitching. Ask your pharmacist if any of the medications you take (prescribed or over-the-counter) have the side effect of twitching.

Your body chemicals called “electrolytes” can get out of balance and can cause twitching. Check to see if your lab tests show low levels of magnesium or sodium as twitching is a symptom.

Neither your kidney doctor nor your home training nurse are specialists in conditions of the nervous system and may not be aware of possible causes of twitching. There are some rare and not so rare conditions (like restless leg syndrome) that cause involuntary muscle movements.

Here’s an article on muscle twitching that may give you some ideas of things to ask your doctor or (hopefully) a neurologist.

Hello Beth:
My dialysis nurse had told me the same thing, that she never heard of dialysis causing twitching in all her years as a dialysis nurse. That is until my last visit to the clinic, when I told her I had encountered others online with the same complaint. Suddenly, she admitted to having the wife of one of her other patients mention that her husband also twitches, every time he is doing dialysis. Although she (the nurse) had no explanation to why this occurs.

As for kidney function, I’m end stage renal, and have no kidney use at all, as far as I have been made to understand. I may well be risking my life by skipping some dialysis sessions, but when I do, I actually feel healthier then when I am constantly taking the treatments. After one day without dialysis the twitching subsides, after two days I feel normal again, and usually by the third day I feel I may need a dialysis treatment. I don’t see how constant involuntary twitching, (which begins in the legs and works it’s way to the rest of the body has any resemblance to what could be considered as being well or healthy? I did an experiment a couple of months back and went two whole weeks without any dialysis, although it didn’t help to reduce the excess fluid in my legs I found that a good 40 km bicycle ride made me feel much better and also reduced my creatine levels more significantly then a full week of dialysis. In fact after that and an even longer bike ride, from my town to the city both in fact just the day before my lab work (blood tests) my toxin levels, especially my creatine levels, were down significantly.

Contrary to the twitching and what I’ve been told, dialysis leaves me feeling worse more often then leaving me feeling better. I don’t think more clearer as they state it would make me feel, in fact my thinking seems more muddled then before. Then there’s the itching and the feeling of exhaustion that also seem to accompany dialysis treatments. I also feel that I have been deceived by doctors and dialysis staff and brochures that make dialysis seem like a pleasant vacation. First before I agreed to the insertion of the cafiter, I was told of all the wonderful things it would do for me. I was told I’d feel healthier, that my thinking would be clearer, just the opposite of how it really makes me feel. I was told I would die if I didn’t get it done, I was old I may take baths, the brochures in the clinic make it sound like the greatest thing in the world, which I find them most deceiving. The biggest deception is how it would not affect your sexuality or activity.

The little truths only started to surface after I agreed to the insertion, and actual insertion of the cafiter. I has soon after that, found out that baths were out of the question, and that of the itching and twitching, the loss of appetite, the pains called drain pain, (which feels like someone draining you testicles from the inside to the point of sever pain and discomfort), the pain when digesting and or passing stools or gas, the pain involved in urinating, and here’s the kicker. Remember the brochure mentioning how sex would be unaffected? Well that was an outright lie, and a deception that I feel must be answered for, amongst the others. I found out one day to my embarrassment that I can not maintain an erection, and that I can’t control the discharge, which now happens immediately, which neither was ever a problem for me in the past. I had mentioned this to the doctor as to why this was happening, and he skillfully dodged the question by saying, at my current toxin levels, I shouldn’t even be thinking about sex. Even if that was actually so, what about when toxin levels are down where he thinks/or wants them to be. An answer would have been appropriate. Nothing like informing your patients after the fact!

I sincerely believe that most of these side effects are being caused by the cafiter itself and/or it’s location in my groin area. There may also be the possibility as you suggest that I may have an allergy or sensitivity to the dialysate or the bags or tubing, and will be checking into that. As for medications, I’ve always dislike pills, so I take only what I am prescribed, and as I was taking the same pills before the dialysis surgery with no adverse effects, I can most likely be sure it was not the medications, which consist of a stool softener, water pills, high blood pressure pill, a vitamin E pill, and calcium pills as a binding agent. None of these have had any adverse affects. I have already, last appointment asked them to add and check for magnesium or sodium levels which they added to the last test, you would think they could or should have thought of that one on their own however. I shall be getting the results of those tests this Friday.

So your are suggesting a whole separate set of specialists for this twitching problem? And I am supposing that restless leg syndrome, may be what my twitching is called as when I do dialysis, that’s where it begins, in the legs, and then spreads from there. I can tell you I haven’t done dialysis since my last message, and the twitching has stopped. I will be doing some sometime tonight or most likely tomorrow, as I do realize I must keep my toxin levels down. Day times are better for me as the twitching and drain pains prevent me from sleep, Some days after frequent dialysis, I twitch so bad I’m awake for 3-4 days without sleep, which also can not be good for anyone! I was then prescribed sleeping pills to help me sleep, at first one would do the job, then I needed two, now three do not even have an effect.

What I am finding baffling is how anyone can call this living, I’m starting to look favorably to the alternative. In Ontario Canada, you have to wait a minimum of 6 1/2 years on a donors list if you can not come up with a live donor. And to top that off, you have to be on dialysis to get on that list in the first place. I think that’s a little too long to endure this twitching and other discomforts. To say the least and no blame is being placed here, this whole kidney thing has ruined my life and life style as well as having crushed my hopes and dreams, one of which was to go to Indonesia, and meet with a very special friend and possibly get married. As it is, and I have been honest with them about my condition, (except for the sex part that is) and she stills seems eager to proceed. But we are both very realistic, and that seems more and more to be something that is becoming unlikely.

My final thing I must do, is create a video informing people of my experiences in hopes that others will have more information to be able to make more informed decisions. I currently have two You Tube channels and other sites where I may upload this content to, and in combination I have around 300 subscribers, and my videos seem to reach great deals of people beyond that. I haven’t put out a video in two years, yet I seem to get a new subscriber ever week, This has given me something to talk about. However it still may be a while for such a video, as I put a lot of time into them for quality purposes, and I must be thorough by gathering as much information as I can. With this, I take my leave for now, and ask anyone with information on PD Dialysis and or their experiences contact my on my main you Tube channel, user name, mrgionni, and leave me a private message. I can add a mention if preferred our relate your experiences and/or advice under a fictional name or not at all if preferred. I’m eager to hear from others with the same experiences.

John Kingsley

You Tube User Name: mrgionni

Ps. A simple web search of my name will reveal many other sites in which you may belong to and find me at. Thank you for your time and attention. And may any with end stage renal disease fair much better than I have. And thank you Beth for your reply, hope to converse with you again shortly, and have added this page to my favorites so as I may easily locate it again.

Hi John,

It sounds like you could have used more education about kidney disease when you were in the earlier stages of your illness. Have you visited Kidney School? It is divided into modules. There is one on sexuality and fertility that you may find will give you more questions to ask your doctor.

I can’t imagine any brochure on kidney disease denying that sexual functioning can be a problem for people with kidney failure. However, there are things that can help sexual functioning and you can read about them in that module.

Since you’re having so many symptoms with PD, have you ever considered doing hemodialysis? Patients have reported improvement in restless leg syndrome and in sexual functioning with longer and more frequent hemodialysis treatments (problems are still reported with 3-4 hours of hemodialysis 3x/week).

I suspect that your bike rides caused you to sweat which is another way to get rid of toxins. Patients who use an exercise bike during dialysis report fewer episodes of restless leg syndrome. They also report that they have less depression and exercise may even help reduce the dose of EPO needed to treat anemia. Keeping active and physically should help you stay healthier.

Does your clinic know that your so uncomfortable due to the twitching that you’re experiencing that you’re skipping treatments? If you can go 2 weeks without dialysis, you must have a significant amount of residual (natural) kidney function remaining. Has your clinic measured your residual (natural) kidney function lately?

My daughter started home dialysis about two months ago. We thought she was going to feel better with this method, having the understanding that this way is less severe on vital organs. Aside from giving back her first dialysis free weekend in five years she has had nothing but problems adapting to this method.

She too is having disturbing tremers, eye twitches, and nausea. We are finally getting in to see her nephrologists tomorrow. I know little of her blood workups except that she got a phone call last week for the nurse that her magnesium was to high and that she wanted her to go to emergency room immediatedly to drink some antidote, but she was met with confusion, where one doctor didnt think it was high enough and was going to send her home untreated, while another chased her down the hall way with this drink.

These tremors are disturbing to witness. I have been reading up on this before our visit tomorrow and have found very little except the possibility of Hard Water Syndrome from contaminants in the solution. which appears to not have the same strict procedures of distilling and filtering as the other dialysis method. If this is the cause the article states the tremors can become permanent if not rectified quickly.

Just want my girl to have an easier time without always second guessing her treatments.

Hi Kacey’s Momma, you say “home dialysis,” but don’t specify which type it is. This is a PD forum (for peritoneal dialysis), but if there is a possibility of “Hard Water Syndrome,” that would suggest that she is maybe doing some type of hemodialysis, because the solution for PD is sterile and prepackaged (and made with distilled water, if I had to guess). Please tell us where you are, what kind of dialysis your daughter is doing, and with what machine. How old is she? Does she have other medical issues? I suspect that your question needs to be moved to a different thread.