Can't stop moving

[Snuffy143]

I am cursed with R.L.S I have had it for so many years and find nothing helps! It wears me out therefore I am miserable all day.

[Madlegs1]

What medications are you on?

What is your ferritin number?

Maybe we can help once we have those answers.😄

[Snuffy143 in reply to Madlegs1]

The only medicine I take is Levothroxen for my thyroid and Gapentin.

[Snuffy143 in reply to Snuffy143]

I dont know what Ferritin is.

[SueJohnson in reply to Snuffy143]

Any OTC supplements? Some of them can make RLS worse too.

[ChrisColumbus]

Levothyroxine (Eltroxin, Synthroid and other brand names) can make RLS worse, although this doesn't impact all users. It might be worth discussing this with your doctor, although many know little about RLS.

The fact that you are on Gabapentin rather than some older treatments is a good sign: how long have you been on it, and what dosage are you on?

Another important factor in RLS is levels of iron in brain cell systems. Measurement of serum ferritin levels in the blood is the best indication that we have of iron storage in the body and brain.

You should ask for a full iron panel blood test, which should ideally be taken in the morning before eating. You need to know the actual ferritin number, as what doctors say is 'normal' is often too low for RLS sufferers. If the number is under 100, a course of iron supplementation - with e.g. 'Gentle Iron' ferrous bisglycinate - helps the majority of RLS sufferers.

There are many other factors that can be involved in RLS: look for Replies from informed members such as SueJohnson , Joolsg and Madlegs1 and others

Good luck!

[Yecam1949 in reply to ChrisColumbus]

If we must take thyroid supplements is there one that will not aggrevate RLS.

[SueJohnson in reply to Yecam1949]

See my reply below to ChrisColumbus.

[SueJohnson in reply to ChrisColumbus]

Coincidentally I just finished doing a lot of research on thyroid problems and their medicines and have come to the conclusions that they can help RLS symptoms. However they should not be taken with 4 hours of taking iron.

[ChrisColumbus in reply to SueJohnson]

Came across this article last week but didn't pursue..

"Associations between RLS and thyroid disease may shed light on complex biological mechanisms underlying RLS"

pubmed.ncbi.nlm.nih.gov/324...

[SueJohnson]

To expand on ChrisColumbus's reply on ferritin. 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]

On the gabapentin you may not be taking enough or you may not be taking it the right way. Beginning dose is usually 300 mg gabapentin . After that increase it by 100 mg 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. 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." The maximum is 3600 mg. 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...

[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.

[Jetto]

immediately go to RLS.org and find a RLS specialist near you.

Neurontin/Gabapentin are very helpful

There is a new drug out too

[Snuffy143 in reply to Jetto]

Will do. Thank you.

[Tanker1 in reply to Jetto]

Very curious: what is the new drug?

[Sunflowergirlem]

I'm so sorry you are going through this. I have been dealing with RLS for many years. You're not alone. Medications help for a little while. Hot baths helps. I bought magnesium cream on line. Sometimes that helps. Wish you a restful night.

[SueJohnson in reply to Sunflowergirlem]

Are you taking any medications for your RLS?

[Axex]

Try a large gym ball to sit on when watching TV. Roll backwards and forwards or bounce gently.

[Eryl]

You could try to reduce your level of systemic inflammation as inflamed nerves are hypersensitive so will send out the signals which caue rls. Change your diet to avoid inflammatory foods like carbohydrates which raise blood sugar (esp. refined carbohydrates like those containing white flourand sugary deserts and drinks) also refined seed oils are inflammatory because they cause oxidative stress and many contain residues of glyphosate weedkiller.

[tuckerdog109]

I sympathize. I don’t have RLS but have been diagnosed for nureopathy. I am on my 4th session of chiropractic visits and it is making a big difference . My symptoms are severe tingling in the toes and fingers. The past three days have almost been free of that . I’m still taking 1.5 ml of Pramipexole but have been slowly cutting back. I would recommend trying a chiropractor.

[Guitarist235]

Hi everyone I'm also an RLS sufferer, but refuse to take any medication and judging by all the comments it doesn't seem to work for everyone. Last night I decided to take a chance with Vicks Vapo rub by msssaging/rubbing it into my thighs and got immediate relieve. Google it this morning and discovered that it can be used for muscle and joint pain. Going to chemist today to check if they have a sprsy/cream specifically aimed at muscular/joint pain. OK this was only one night but it did give me comfort. I'm also one of those who gets RLS in my arms but couldn't use the Vicks cause I ran out of stock🙄Will definetly do both tonight. Good luck guys. (Sorry ladies the 'guys' includes you too🤗)

[Jetto]

Go to RLS.org find a specialist near you

exercise makes it go away for most people. harder the work out the longer it stays away.

I put a glider in front of my rocking chair and rock myself to sleep.

Many times work out then while breathing hard jump in bed.

[Amrob in reply to Jetto]

Unfortunately for the majority of sufferers, vigorous exercise makes RLS symptoms far worse. Moderate exercise is recommended, the earlier in the day the better. Gentle exercise in the evening eg. walking may also help.

[Jetto in reply to Amrob]

interesting

I have had the pain type of RLS not leg movement for the last 40 years until the last 4 years light exercise does nothing

But a hard exercise makes it goes away 100% and frequently for a while after i stop.

Since most people have more problems at night when you rest and less or no problems when active I assumed exercise worked for most, my bad

[Bridall]

Have you tried Vit E I have had it for 2 mths now and no RLS.