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Restless Legs Syndrome

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New member 🙂

Yarn1985 profile image
Yarn1985
•11 Replies

Hi everyone. I’m glad I found this group. I didn’t realize how RLS affects so many. I’ve had issues since I was about 8 months pregnant with my twins. It never went away after it started, and they are now 35. I nicknamed it ‘leg migraines’ because it hit just about same time every evening. Didn’t know my mother had an issue until I saw her once in the hospital and her legs were moving every few seconds. She never spoke about it and I never asked. I don’t know anyone else that has this beside me and now you all. Thanks for all of the great info!

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Yarn1985
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11 Replies
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Amrob profile image
Amrob

Welcome Yarn1985. I'm glad you've found us 🙂

Madlegs1 profile image
Madlegs1

Since it started with pregnancy ,there is a high probability that it is iron deficiency related.

Get a complete iron panel blood test, and if ferritin is low, below 100, then follow the steps for raising blood iron that are hopefully pinned to this page.

Good luck.

SueJohnson profile image
SueJohnson

As Madlegs1 said, when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. Improving your ferritin to 100 helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead have him prescribe gabapentin. Beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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. Most of the side effects of gabapentin 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 daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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 if needed as many doctors do not know much about RLS or are not uptodate on it at

Https://mayoclinicproceedings.org/a...

Also if you are taking any medicines or over the counter supplements, if you list them here I can tell you if any of them exacerbate your symptoms and perhaps give you a safe substitute.

Medici profile image
Medici

Levothyroxine, fluoxetine, pregabalin, rotigotine, movicol. Prn for migraine - eletriptan, naproxen and omeprazole .

DicCarlson profile image
DicCarlson in reply to Medici

It looks like you have replied to a related post. You should start a new post if you need help with your medications.

SueJohnson profile image
SueJohnson in reply to Medici

Fluoxetine can make your RLS symptoms worse. If you are taking it for depression, trazodone is a safe substitute. Omeprazole can make your RLS symptoms worse. A safe substitute is Gaviscon. Levothyroxine can make your RLS symptoms worse but don't know of any safe substitute. How much pregabalin are you on and why are you also on rotigotine?

Medici profile image
Medici in reply to SueJohnson

Hi SueAre you a health care professional?

SueJohnson profile image
SueJohnson in reply to Medici

Nope. I went through what many others did. Augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others.

Medici profile image
Medici

From Medici, also Zolpidem.

Merny5 profile image
Merny5

Welcome to the group Yarn1985. This is a great support group with an abundance of knowledge concerning RLS.

Yarn1985 profile image
Yarn1985 in reply to Merny5

Thank you!

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