"Restless Body Syndrome"

On in center hemo I get what I call “restless body syndrome”, just like RLS only all over my body. I have to get off machine early each time because I cannot handle the symptoms. An astute nurse turned down the temp of the machine by 1 degree (went from 37 degrees to 36 degrees), that’s right just 1 degree. The symptoms subsided for several years. Now it’s back. They would only go down another 1/2 degree, and I still get the symptoms about 1 - 2 times in every 4 - 5 treatments. My neph will absolutely not write any prescriptions (something for RLS) unless they are “directly related to dialysis”. I guess getting off the machine early is not directly related to dialysis. I really do not want to take another pill anyway. So he want’s me to make appt. with a PCP to get prescription. Wonder how long I would have to wait for an appt. with him??? Anybody heard of this one?

Besides reducing the temperature of the dialysate, what else have you or the clinic done to reduce your symptoms. How are your labs? Since you’re shortening treatments when you feel jumpy, you may not be getting enough dialysis. Have you considered doing home HD? Maybe you would be less restless in your own home where you could get more dialysis by either doing HD more often or doing HD overnight while you sleep. If doing HD while awake, you could have visitors and/or do things to take your mind off being on the machine.

How are your anemia labs. Low iron and hemoglobin levels as well as deficiencies of some vitamins may contribute to the symptoms you’re having. Rather than seeing your PCP who may not know much about RLS or nerve problems, I’d suggest you ask for a referral to a neurologist. That’s the medical expert who likely knows the best treatments for restless legs.

In the meantime, one thing that has helped HD patients with restless legs syndrome besides taking medications is exercising during dialysis. Some clinics have bought peddlers for patients to use during dialysis. Patients who used a peddler or exercise bike reported that their restless legs were better. Here’s a blog about that.

Here’s information from Kidney School on staying active.

Checkman, how fast is your blood pump running? Other people I know who do HD find that they feel as if they want to “jump out of their skin” if their blood pump speed is too high. If I had to guess, it sounds as if you are in-center? Blood pump speeds are often–unfortunately–set to 400 or even 450, when 300 or 350 would be much safer. This is a change you can ask your doctor about. Switching to a slower, gentler form of home HD might help as well, as Beth points out.

In general, using my 10 pound weighted blanket has helped. I Feel more secure, less emotional and don’t thrash around as much.