Stage 5 ESRD with diabetes and CHF, on home PD x one year with 5 exchanges of 2500 CC’s on Fresenius cycler using 2.5 five liter, 1.5 five and three liter bags nightly. Drinking diet tonic water containing quinine and taking 10 mg valium at bedtime in an attempt to minimize severely painful leg cramps which occur with the 4th and 5th exchanges. Oral 500 mg turmeric stops cramps within 10 minutes, but taking it at bedtime prior to the occurrence of the cramps is not preventative. Calcium, magnesium and potassium levels are normal on lab. Anyone have suggestions to prevent these leg calves, ankles and foot cramps from which I wake up screaming?
(Reducing the strength of disalyte to all 1.5 does not remove enough fluid and still results in the leg cramps.) Any suggestions would be appreciated.
Hi Dick. I’m so sorry to hear your cramps are that bad and seem to be occurring nightly? It’s a shame your health care providers aren’t providing options for you. It’s obviously effecting your sleep, with the Valium not helping, and that’s not healthy for you either. I don’t have info for prevention but here’s what I do have.
My dad gets them on occasion, but his are milder and usually during his first exchange when I put him on the 2.5% solution; he also has only one leg to cramp and no toes, plus phantom pains triggered by the dextrose. I give him either clear unflavored Pedialite or apple juice and he slaps on an ice pack and elevates until they subside. Our friend Sylvia also on PD for 5 years now says she uses a heating pad instead of icing, which is traditional therapy for cramps, because she can keep the pad right there at her bedside. I get my dad his packs when needed, but I guess you could always have a cooler by your bedside.My dad’s friend uses a teaspoon of mustard to stop his cramps.
I don’t know what you’ve been told about cramp management so please excuse me if you already know this: if your cramp is causing your toes to point, then try to get them to curl. The use of the opposing muscles can help stop the cramp. As long as you do this action slowly and repeatedly. If this is too painful, try to ice up and down that spot…literally think at it, “cool down!” The cramp is typically a “hot” feeling and you want the energy to cool off. There’s products like BioFreeze that are good topical cramp assists too. Sometimes my dad has to use a topical as well as an ice pack. Just not the same spot for both (ice on top of foot, topical on upper shin) as you don’t want to damage the tissue. Silly as it may sound, I talk to my body and tell it to ‘cool down calm down you don’t need to do this relax unknot untie relax’…I make it a mantra and it has helped to keep me calm too. Because if the cramp is that painful, you(I mean me) start to panic it’ll never stop. And that makes your body seize up more.
I can’t honestly say I know of any oral preventative that’s 100% effective when body chemistry changes daily. Of course, if you could catch your cramping before it manifests into a full blown attack, that would be a miracle and you could pop a Turmeric and go back to sleep.
Have you been able to track at all to see if something in your diet (or not in your diet) might cause the cramps? Or an activity that is being done at a certain time? Do you have any back, hip or knee problems that could be contributing to the cramps? Do you elevate your legs prior to treatment or during treatment? What about massaging your legs prior to treatment to relax them? Or a bath to cover legs with some Epsom Salts (containing magnesium)? These are things that you could bring to your doctors to help them help you maybe??
Here’s an article on the full Home Dialysis Central site that was written by Dr. John Agar from Australia. It seems to be mostly about HD and PD isn’t mentioned. However, it does list some possible causes and treatments that you could discuss with your doctor. https://homedialysis.org/news-and-research/blog/32-heading-off-the-dreaded-cramp
if you have had diabetes for a long time please talk to your nephrologist.
i would ask to have the circulation in both legs checked. it may not be the fluid being removed, but poor circulation from diabetes.
Regarding severe leg, feet, toe cramps;
I’ve tried a lot of methods with little luck until I discovered the traditional nighttime fluid replacement. I keep a large insulated tumbler with a lid in my nightstand. In it I vary between ice water, iced Pedialite and warm tea. I used an alarm at first to wake and drink deeply but now it’s become a habit. These replacement fluids need to start at a small volume (6-8 oz.) and increase gradually as your body “learns” to utilize it where needed. I now consume up to 24oz. of fluids during this this nightly break without fluid overload problems. Your body is unique and your methods and/or fluid balance is unique. Listen to what your body wants and you may find your solution quickly. Best of dialysis days, Gerald