Rant + seeking help to manage RLS with home remedies

[PrinkaRuds]

Hi, I’M 26 years old and I’ve been suffering from RLS for two years now. I can barely remember having a good night’s sleep the last two years and I’m frustrated with the medications as they don’t seem to be helping much. I was on pregabalin and pramipex for over a year along with antidepressants. I stopped taking all medicines after a while and then sought a new doctor. After running all blood tests and nerve conduction tests, I was told that I have really low Vitamin B12 levels and the doc said it doesn’t look like RLS. That something else could be triggering this.

The doc put me on 100 mg gabantin and a supplement for my vitamin b12. I took this for a month and it made no difference. He then increased my dosage to 200 mg recently. First day seemed hopeful as I had no pain. My pain is back on the second day.

I don’t know if this will ever get better. I’m tired all the time and it’s taking a huge toll on my day-to-day activities.

Is there any lifestyle change I need to make? Any food I need to avoid? Or is there any home remedy I can try? Any suggestion would be really appreciated!

I use CBD on my legs which is again on not much use. Leg massager kind of helps. If you happen to know any particular electric massager with heat, please do suggest.

Thanks.

[SueJohnson]

200 mg of gabapentin is actually less than the recommended starting dose of 300 mg so it is no wonder it is not helping you. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Also it takes 3 weeks to full work. 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. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. Also, if you haven't had your ferritin checked, 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 your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100 and your transferrin saturation to be over 20% but less than 45%. Improving it to that 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 may 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 its absorption. Don't take tumeric as it can interfere 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 3 months. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it including the latest treatment and refer your doctor to it at

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

[PrinkaRuds in reply to SueJohnson]

Thank you so much! I’m seeing the doctor next week. Hopefully, he’ll increase my dosage. I got blood tests done. My Vitamin B12 is really low. I’ve been given supplements to help with that. I’m also considering taking iron infusions. Maybe that will do the job.

[Joolsg]

The most common cause of RLS is low iron in the brain.The blood tests that showed your low B12 should also show your serum iron and serum ferritin.

If your serum iron is below 60 and serum ferritin below 100, take ferrous bisglycinate at night or ask for an iron infusion of injectafer to raise levels quickly. 60% will see a dramatic improvement in their RLS.

You might then avoid the need to take medication.

Most anti depressants and sedating anti histamines and statins and PPI drugs worsen RLS so check you're not on any of those.

I really hope you can resolve the RLS by raising your B12 and serum ferritin.

[PrinkaRuds in reply to Joolsg]

Thank you so much, I’ll check my serum ferritin levels

[Eryl]

A lot of people find that reducing sugary foods especially those with a high G.I. helps.

[RLSgirl]

My RLS started in my mid 20s too. it is terrible. I feel ya!

Last year, for health reasons I had to stop coffee cold turkey. after about 3 weeks my RLS symptoms decreased quite a bit and is much more manageable right now. I don't know if it's a coincidence that my mid-20s is also when I became a coffee drinker, or if Caffeine is and has always been a huge component of my RLS. Everyone has different triggers, caffeine may not be your problem. just putting it out there in case. of course eating a good clean diet is always helpful. sugar, gluten, dairy and alcohol also seem to be common triggers.

I encourage you to keep seeking answers.

[RLSgirl]

another tip. I just discovered THC-O it is legal in the states. I bought some gummies and take a half a gummy an hour or 2 before bed. it does seem to help take the edge off and relax my legs a bit. but it's not a cure.

[PrinkaRuds in reply to RLSgirl]

Coffee consumed during the second half of the day seems to worsen my RLS on some days. I still have to figure it out. I didn’t know dairy was also a trigger. My neurologist said coffee isn’t a trigger though. I’m not really sure. Sugar definitely worsens my RLS. Like you said, it’s different for everyone.

I live in India. Cannabis isn’t legal here. But I think there’s some sort of loophole in the law. I’ll check it out. Thank you so much for sharing