Hello everyone.

[Harmony1227]

I am new to this community. I was just diagnosed with RLS in September.. as all or most of you experience… I can not sleep well on most nights due to the RLS. I was advised not to drink caffeinated coffee… but I love the energy that I get with caffeinated/regular coffee. Should I just have one cup of regular coffee a day and then drink decaf coffee or should I not have any caffeinated coffee ? Any advice

[SueJohnson]

On the coffee, some people find it makes RLS worse and some find it helps. Also some people find they can take it in the morning and some people can't. Experiment and find out. 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. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. 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 ask your doctor to prescribe gabapentin.or pregabalin. 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 pregablin) 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...

[Harmony1227 in reply to SueJohnson]

Thank you sooooo much for all this advice! I will look into all of this! Have a great weekend and I hope that you heal completely 💕

[Little_apple in reply to SueJohnson]

Your responses are such a gift!

“You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. “

I will start with iron testing. I’m going to do a full mineral panel when my hair has grown out sufficiently.

I’m concerned that Gabapentin will come at the steep cost of cognitive decline.

“Chronic administration of gabapentin and carbamazepine may cause increase in neurodegenerative changes in the adult brain.”

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

[SueJohnson in reply to Little_apple]

Are you taking carbamazepine? If not then don't worry about taking gabapentin for that reason.

[SueJohnson]

Help/Hurt

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 and yoga. Also many medicines and OTC supplements make RLS worse. If you list them here I can tell you if this is so and may be able to provide a safe substitute.

[Harmony1227 in reply to SueJohnson]

Thank you sooo much. I am only on Centrum multi- vitamin , magnesium /potassium supplements.. and I just purchased a D3/K2 yesterday. They prescribed Mirapex but that did not help at all ! I got my thyroid hormone levels checked because I am 48 and started to develop Peri-Menopause issues and those hormone levels came back fine.

[SueJohnson]

Be glad the Mirapex didn't work. You were saved from a lot of problems.

[Harmony1227 in reply to SueJohnson]

It did not work.

[Joolsg]

Sue's given you great tips.Coffee actually improves my RLS. Food and drink triggers are different for everyone. I don't know why all sites and medical advice mentions caffeine & alcohol when no proper studies have been carried out. So, try to identify if you have any triggers. I don't have any.

Your first steps before Meds is to raise serum ferritin above recommended levels and eliminate/substitute trigger meds like anti depressants, anti histamines.

The Mayo algorithm is the best, most up to date advice on RLS.

Hopefully, raising your serum ferritin will eliminate symptoms.

I would consider a second opinion because Mirapex didn't help your RLS at all. It's no longer prescribed for RLS first line because of the very common complication of drug induced worsening of RLS BUT it is often used as a diagnostic tool. If it stops RLS, it confirms you have RLS.

Have a look at the diagnostic criteria and make sure it really is RLS and not peripheral neuropathy.

cks.nice.org.uk/topics/rest...

[Harmony1227 in reply to Joolsg]

Thank you for that valuable information! Thank you so much !

[SueJohnson]

RLS is usually diagnosed by the following: All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

[Harmony1227 in reply to SueJohnson]

Now I find myself not laying down at all … until I am ready to go to sleep 😥

[SueJohnson in reply to Harmony1227]

But are you then able to go to sleep without having RLS?

[Harmony1227 in reply to SueJohnson]

I still have issues when I lay down to sleep at night.

[Eryl]

I have not found coffee to be a trigger for rls although Ihave completely eliminated my rls by avoiding inflammatory foods but still have a very large mug of coffee every morning.

[Harmony1227 in reply to Eryl]

Thank you for that information on inflammatory foods ! I appreciate it .

[Little_apple in reply to Eryl]

That is inspiring and gives me hope! Regarding inflammatory foods, I’m assuming the typical culprits like gluten , sugar, dairy and maybe grains all together? Thank you

[Eryl in reply to Little_apple]

Yes, gluten doesn't cause inflammation by itself but one of its metabolytes (glaiain) which is released by saliva causes leaky gut so that if you eat refined carbohydrates at the same time then they are absorbed quickly which raises blood sugar and causes inflammation. Hence the reason to avoid foods made with white flour especially.

[Little_apple in reply to Eryl]

I am presently thinking that a Paleo diet would be beneficial or an autoimmune diet like FODmaps or s combo thereof?

[Eryl in reply to Little_apple]

I'm afraid that I have no experience of those, I just avoid even minimally processed food like fruit juices and refined seed oils.

[Merster]

I was pleasantly surprised when I found out the only thing I can enjoy with no consequences is coffee. If my rls starts acting up early in the afternoon a strong cup of Joe or an espresso shut it down. So for years I believed it was a trigger but turns out to be a joy.

[SueJohnson in reply to Merster]

Coffee is that way. For some it is a trigger, for some it helps. So glad you are able to both enjoy it and find it helps.

[5616 in reply to Merster]

After avoiding coffee after 12 noon for years in desperation after a terrible night I tried a cup of filter coffee in the evening after dinner and had the best nights sleep I’ve had in ages! Did the same the next few nights and it has continued to work. Along with Pramiprazole (I’ve tried to come off on low dose and won’t go up plus Codiene) and every other thing like weighted blanket, magnesium etc ..for now the coffee is working along with legs up the wall yoga pose for 5 mins before bed. This forum really helps and good to search a topic. I’ve suffered for more than 40 years so always good to read about what helps others.

[Harmony1227]

😊