Guidance for RLS

[PinkTLC]

Hi Everyone, I'm new to this forum and am so glad to have found you. I have suffered with RLS for years, and in the past year, it's become pretty severe. I get VERY little sleep. Currently, I'm taking Gabapentin and Magnesium Glycinate, but neither are helping--yet. I did take Carbidopa-Levodopa for several months, which eased my RLS significantly, but now it's back in full force and the Carbidopa-Lev. doesn't work anymore. I've written more about my RLS journey in my bio profile if you want to read it. I'm looking for any advice anyone can give me. I'm also curious to know if anyone has tried iron infusions? I read a study that said this has proven helpful. Thanks in advance for any tips and advice.

[Hidden]

Hi Pink, CKD is well known to trigger or worsen RLS in persons who are pre-disposed to it. The CKD makes the body think it is under attack by a foreign invader and in response it releases a hormone called Hepcidin in greater quantity than is normal. Hepcidin is our body’s iron gate keeper. It sweeps free-floating iron out of our blood stream and stores it away where the alleged foreigners can’t get at it. Every living thing loves and needs iron. So our bodies, via Hepcidin, are trying to starve out the invaders. Pretty nifty defense mechanism. However, it is so terrible for us with RLS that I’m at a loss for words for people who have both conditions.

A hallmark of RLS, in addition to a lousy dopamine transport system, is low BRAIN iron. Not low ferritin. Everyone’s dopamine receptors need iron to function properly. It is the grease and glue that keeps them chugging along. Since the RLS brain has poor iron stores we rely VERY heavily on that free floating iron in the blood. Mother Nature has seen fit to lower that free floating iron as night approaches (via hepcidin) in everyone. That night time drop doesn’t bother the non-RLS world, but it does us because we don’t have brain iron stores to fall back on.

Pink, I’m a one trick pony. All I know in terms of treating RLS is ferrous bisglycinate. I take two 25mg capsules about an hour before bed on an empty stomach and within that hour my RLS disappears…for one night, so I must repeat every night. Several other people on here have tried this trick and had good luck with it, overall. I’ll post their stories below.

Anyways, I think you should try this trick before you go for an infusion. I think EVERYONE should try this trick before going for an infusion. I just bought a 180 capsule bottle from Amazon for $14. I’ve seen it as cheap as $8.00 for 90 capsules. I hate telling people to spend money on something that might not work, but I recently bought a small matcha green tea Frappuccino from Starbucks and it cost me over $6.

Back to you and CKD. I read that it’s not unusual for people with this condition to develop something called “Anemia of Chronic Disease.” It presents with the person having normal or even high ferritin yet they are anemic. Doctors are rather desperate to find solutions for this comorbid illness because it’s not good for the CKD patient. I recently read that they will take one of two approaches. They will try to lower the Hepcidin via Heparin, a blood thinner. Please double check me on that. Or they’ll go straight for the infusion which bypasses the Hepcidin. Double check me on that as well. Once again, please think about trying my ferrous bisglycinate trick.

Here are the lucky few:

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

Here are some single posts about iron:

**RKM7 profile imageRKM7Hidden

1 year ago

You’re back!!! It’s great to read your post!! Thanks so much for your encouragement and advice! I remember noticing that I had good nights when I took the iron and then bad nights when I didn’t take it. You’re advice to take it every night made sense to me and It has made such a difference! I can only hope that others on this site will try this approach!!I

***pennygates profile imagepennygatesDicCarlson

3 months ago

That is a question I ask myself. My RLS continues to be subdued by Gentle iron.

EDIT!!!

Ridiculously long article but a must skim for those with CKD:

ncbi.nlm.nih.gov/pmc/articl...

A very short article that everyone with RLS should read:

ncbi.nlm.nih.gov/pmc/articl...

[SueJohnson]

Zoloft is an SSRI antidepressant and is known to make RLS worse. There are 2 antidepressants that are safe for RLS, Wellbutrin and Trazodone. In some cases Wellbutrin has helped RLS symptoms. Trazodone helps anxiety and insomnia. I took ambien and have just been switched to lunesta and find it works better. I take 2 mg and it also comes in 3 mg.

Your doctor will say your iron levels are fine but what is fine for other people are not fine for those of us with RLS. Your ferritin which is the most important measure for RLS may not have even been tested. And if it was it is important that stop taking any iron supplements 48 hours including in any multivitamin 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 to get the correct measurement. Ask your doctor if your ferritin was tested and if so what it was. If not ask for a full iron panel and post the results of your ferritin and transferrin saturation (TSAT) results here. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms

According to the Mayo Clinic Updated Algorithm on RLS iron infusions are recommended for CKD . Check it out at Https://mayoclinicproceedings.org/a... It is the bible for treating RLS. You may want to print out the appropriate section and show it to your doctor.

Because you have CKD your gabapentin dose should be kept low and as a result may not help you. However you may be able to increase it slightly. If you are not seeing a specialist for your CKD you should.

It's probably best not to take magnesium with CKD because it can result in excessive magnesium in your blood.

If you take the iron as SalemLake suggested, take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Ferrous sulfate is cheaper in the US and for most people does not cause constipation but iron bisglycinate is much less likely to. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin.

Since you need something to control your RLS 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. (Morphine and codeine are not recommended). ncbi.nlm.nih.gov/pmc/articl....

[DicCarlson]

Sounds like a flashback to my severe RLS. NO SLEEP! At best, with my legs raised up almost vertical, 2 hours. But - there I go off to work, work all day, don't fall asleep, drive home and back at it - same thing, like groundhog day! Not sure why, but my Ferritin level was 49, raging RLS (docs said normal) - Ferrous Bisglycinate (taken midmorning on an empty stomach) literally stopped it in its tracks. Iron is key for many folks. Too bad they fall down the rabbit hold of DAs!