Dialysis / RLS

[bumblebee_tuna]

Wow, this sub is a lot more active than the Kidney Disease sub, one would think it would be the other way around. I guess RLS is a lot more prevalent than people think?

I never experienced or even heard of RLS before starting dialysis but boy did it hit me hard. It's already hard to sleep while doing Peritoneal Dialysis overnight, but adding RLS on top of that was a nightmare. And then it started effecting me during daytime, while driving or sitting down.

I ended up finding a specialist, could not tolerate any of the dopamine agonists, nor could I tolerate Methadone. I am currently taking Pregabalin 165mg (extended release) with a 5 Oxycodone at night (otherwise I wake up at 3am). That seems to be tolerable and for the most part work. I still get the sensations sometimes but they are a lot more subdued.

Anyways, Just saying hi and let's hope for a transplant in the future.

[Madlegs1]

Welcome.

There are a lot of knowledgeable people on here, so let it all out!😝

[Joolsg]

I hope you get the transplant! My close friend had dreadful RLS until her husband donated one of his kidneys. Zero RLS after.I've just read a study on RLS in dialysis patients and it states that aerobic exercise helps ( morning or afternoon is best) and that gabapentin or pregabalin given immediately after dialysis helps.

Obviously, serum ferritin and brain iron are still very important and keeping levels up will also help.

I really hope you get your transplant soon.

[SueJohnson]

Welcome to the forum. Yes it is quite active because unlike kidney problems most doctors don't know much or anything about RLS and if they do they are not up to date on it and prescribe dopamine agonists which can cause augmentation.

Is your RLS under control?

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

You and your doctor may or may not know the following but just in case you or your doctor don't know this:

Pregabalin doses should be kept low and patients carefully monitored for adverse effects, such as mental confusion and falls Doses should be adjusted for renal dysfunction. since they are eliminated primarily by renal excretion, adjust the dose in adult patients with reduced renal function.

Patients with kidney problems should take care with magnesium supplements. Magnesium supplements can cause excessive accumulation of magnesium in the blood, especially with patients who have chronic kidney disease.

Iron status should be checked and managed with intravenous administration of iron or erythropoietin. Nonpharmacologic therapies, including aerobic exercise and the use of vitamins C and E, may be beneficial.

Oxycodone and hydromorphone can be safely used, but adequate dosage adjustments are required in CKD. Buprenorphine can also be used and has the advantage of lasting 24 hours. .

[bumblebee_tuna]

Is your RLS under control?

For the most part yes, I still have some rough nights sometimes and getting a perscription for Oxycodone every 30 days is kind of a pain. I think it wares off fairly quick and at the 3am mark and I wake up.

I had an iron transfusion when I just started dialysis about 18 months ago. My Ferritin was last measured at 642, so it's definitely not low.

TSAT varies but tends to be on the higher side, it was 38 two months ago but last was measured at 66. I

I get lab work every month so it's monitored pretty closely. My nephrologist refused to even think about another iron transfusion with my current lab numbers. I do get an EPO shot every 3 months or so to keep Hemoglobin in check.

I guess I could try something else besides Oxycodone that last longer? But I tolerate it really well, I'm hesitant to make a change.