RLS and Kidney disease, also Mount Sinai doc

[TreeSpirit]

I am new to this group and to this level of info on RLS. I am very grateful to those posting for their level of knowledge and willingness to share their experience and resources.I am not new to RLS symptoms, I have childhood memories of falling asleep rocking and sliding my legs back and forth. I'm 60 yrs old now and I have times of standing in front of the TV, swaying for hours to get through the night.

As I read through the RLS resources I find mentions of RLS and kidney disease. I'm having some tough-to-diagnose kidney issues, but I never thought to say something to my specialist about my RLS. I'm still not quite sure what I'd say as I'm not clear on the connection.

While googling on RLS and kidney disease I found a document from Mount Sinai (I'll share the link below). This is what they said...

"Uremia or Kidney Failure

As many as 25% of people with chronic kidney disease have RLS. The exact cause of this is not known but may be related to co-existing anemia and iron deficiency as above. A loss of opioid receptors in the brain may also contribute to RLS in those with kidney disease."

They don't say what kidney diseases and what they do say isn't very clear to me. Has anyone else had RLS issues related to kidney disease? Does anyone know more about this topic?

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I wanted to share Mount Sinai's document. I haven't done justice to Mayo Clinic's site and I don't know that Mount Sinai has anything new to offer, but just in case...

mountsinai.org/health-libra...

[ChrisColumbus]

Interesting piece. For reference, the Mayo Clinic algorithm says:

"RLS is common in patients with chronic renal insufficiency, especially those undergoing hemodialysis. 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. Ropinirole and rotigotine, both with hepatic metabolism, can be used. Gabapentin and pregabalin are also effective, but owing to renal metabolism, doses should be kept low and patients carefully monitored for adverse effects, such as mental confusion and falls. RLS often improves or resolves after renal transplant."

[ChrisColumbus in reply to ChrisColumbus]

On a related point, 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."

[TreeSpirit in reply to ChrisColumbus]

Thank you for the heads up, Chris. I am taking Magnesium Citrate typically 117 mg/day and it does help my RLS. I could use to take more but something stops me. Once I get more info from testing it should be clearer what to do from here.

[ChrisColumbus in reply to TreeSpirit]

I take a total of 400mg a day, but know that my kidney function is fine. Good luck!

[SueJohnson]

Since iron deficiency is mentioned and that is also often a problem with RLS that is the first thing I would check. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. 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 advice.

[SueJohnson]

Since you have RLS I would advise you not to take ropinirole nor rotigotine as up to 70% of people with RLS will suffer augmentation which believe me you don't want. However the normal advise that I give which follows is probably too much gabapentin or pregabalin for your condition as mentioned in the Mayo Clinic Updated Algorithm. Here is my normal advise but discuss all this with your doctor and refer him to the Mayo article because he is unlikely to know anything about RLS. Ask your doctor to prescribe gabapentin or pregabalin. (Gabapentin is less expensive than pregabalin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of the gabapentin (pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it at Https://mayoclinicproceedings.org/a...

[SueJohnson]

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, estrogen, 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, 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, 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, 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.

[TreeSpirit in reply to SueJohnson]

Thank you Sue for this great body of info. I know it's taken all of you time and effort to cultivate it and that it has to be updated as we all move forward in knowledge and experience. Thank you for bringing it forward to me.

Honestly, from reading all your posts, I get the willies just thinking about taking ropinirole. Pharmaceuticals and surgery are courses of last resort for me. But if I end up there, the info you've given me will help me navigate it.

[Joolsg]

My close friend had kidney disease and severe RLS. She received a transplant 20 years ago and the RLS instantly disappeared. So clearly there's more to it than just iron deficiency and low opioid receptors. If they were the link, the RLS wouldn't instantly stop. Perhaps there's something that the kidneys filter out that triggers RLS.Another area where more in depth research is needed.

[TreeSpirit in reply to Joolsg]

You make a very good point, Joolsg. It's made me take this a little more seriously, from a thought question in the night to action in the morning. I hope your friend continues to do well.

[TreeSpirit]

Thank you again for all this information! I will be calling my PCP tomorrow and get the ball rolling. If I learn anything new about RLS & kidney issues, I will share. Thanks!

[SkyCop]

Yes! I have had 2 kidney surgeries and know what you're talking about. I prob had undiagnosed RLS as a child too. I have had the severe level since my late teens.... exercise, massage, supplements, etc stopped helping once it got severe. I don't know if there is a link between RLS gene and developing kidney probs later..... but kidney failure does cause RLS. From what I understand CKD patients can develop RLS because minerals go wonky- iron too low, calcium too high, & erythropoietin isn't being produced.... once these are treated with supplements & Procrit RLS symptoms go away. Make sure they check your parathyroid hormone because you are at risk for bone disease and that can cause RLS too. I'm sorry you're going through this. I hope your docs can sort out your minerals and get your RLS treated asap.... We know your misery with that! And you have enough to deal with getting your kidney function up. I remember that lousy feeling when my kidneys weren't working. Completely debilitating. My heart goes out to you. 💔

[Retiredlady in reply to SkyCop]

I have Oesteoporosis and severe RLS with symptoms on and off 24/7.Is that the bone disease u r referring to?

[SkyCop in reply to Retiredlady]

Bone diseases that would affect red blood cell production in the long bones (like femurs)

[207jlodancer]

I was diagnosed with kidney disease (idiopathic hypercalciuria) 3 months ago.I was put on the KIDNEY STONE DIET (KSD). That means avoiding foods, mostly plants and nuts, that have oxalates in them. The oxalates are not property digested in my body, and they stay in my body and form painful and potentially life-threatening kidney stones. I have had RLS for nearly 40 years. Was on all the meds and different therapies over the years, but nothing worked fully or long-term. My RLS however literally disappeared within 2 days of eliminating oxalates from my diet. I strongly suggest people try this FIRST, not last, as in my case. Good luck friends! ps - there is a limited amount of clinical evidence to support my experience on the internet.

[Sawbird]

Thank you for sharing the Mount Sinai document. Do you have any recommendations for RLS treatment in New York City?

[SueJohnson in reply to Sawbird]

There are 2 in NYC and 1 in Yonkers.

David J. Dickoff [phone] Yonkers

Ana C. Krieger [phone] New York

Harini Sarva [phone] New York

However although the doctors have been submitted by someone who used them and found them knowledgeable, they still might prescribe dopamine agonists which you don't want or might not prescribe opioids if you need them. The reason is that the person who submitted the name might have been happy with a DA and without an opioid. The best way to find out if the doctor is uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.

[LotteM]

Sue and Seabird, Glen Brooks is the head of t he ketamine clinic. He helped Shumbah and prescribed her buprenorphine with excellent results. However, dr Brooks is not a RLS specialist. Have a look at rls.org for quality care centres in or close to New York. Are you in city or state?

[SueJohnson in reply to LotteM]

Whoops - you are right.