Introduction - RLS

[DocCookie]

I have been struggling with RLS for some time. There just doesn't seem to be anything that helps. Antihistamine medications only make it worse when I try to sleep. I have been prescribed sleep medication, but I am afraid to take it every night because I do not want to become dependent. Everything such as GABA and other over the counter sleep medications are not working including melatonin. Just wanted to hear from others of anything that has successfully worked forgetting a good night's sleeps. Thank you.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here. Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. 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. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 as the peak plasma level is 2 hours. 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 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 pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

I'm assuming your problem with sleep is a result of your RLS. Is that the case?

What sleep medicine were you prescribed?

[DocCookie in reply to SueJohnson]

Hello, Sue,

Your response was the most helpful suggestions ever that I have received. I just don't think PCPs are fully aware of the horror of RLS and inability to sleep. Yes, my inability to sleep seems to stem from RLS, because I can be very sleepy, and the sensations in my feet and sometimes involuntary kicking keeps me awake. My PCP is a DO and likes to try things that are non pharmaceutical, but he has cautiously prescribed me Ambien. I sometimes take a half of a 5 mg pill and it works well. But I am terribly fearful of addiction or dependency. I was also prescribed Gabapentin (100 mg) at my request, and I increased dosage to 200 mg based upon what I have read about RLS. But it didn't work. Perhaps this is because I took powder high absorption Magnesium Glycinate just before taking it. Your information about how it does not allow for the absorption of Gabapentin was very interesting. I have to take the magnesium and calcium due to osteoporosis and for muscle relaxation. I was hoping for it to help me to sleep but now I understand that I need to take it earlier if I am going to use Gabapentin. I have tried the spray magnesium, hot baths with salts, at bedtime and also using binaural beats music or a sleep meditation tape which helps but does not eliminate the RLS entirely. I do not drink...I stopped melatonin when I read it makes things worse.

I will be asking my doctor about a referral for a test for Ferritin levels and TSAT numbers. If it is low, how do you raise those levels? Is it with an iron supplement? Thank you again. Your suggestions were so valuable.

[Whippetmama in reply to DocCookie]

I would add that the only antihistamines that are safe for us are of the non-sedating variety.

[Cavs in reply to SueJohnson]

I recently starting taking something called restful legs fast and effective relief by highlands its over the counter you can find it at most drugstore and Amazon you dissolve 2 at the onset of cramps under the tongue I noticed they give me some relief since I'm going off requip since I've been a really high dose for so long try it and see if it doesn't help you

[SueJohnson in reply to Cavs]

I used that when my RLS wasn't too bad and before I started taking any medicine for it. It worked for 2 to 3 months and then stopped working.

I suspect you meant this for DocCookie

[89874438863]

Здравствуйте, есть снотворные к которым нет зависимости, и на сбн не провоцируют, это сомнол DeepL Translate: Hello, there are sleeping pills to which there is no dependence, and do not provoke sbn, it is somnol.

[Simkin]

Honestly Doc Cookie I have tried everything over 30 years & the only thing that works for me now is low dose buprenorphine.

[Simkin]

And, by the way, most of us just give our experiences which I have found hugely helpful to me.However, Sue & Joolsg know so so much medically & therefore give amazingly detailed & constructive advice.

We are incredibly lucky to have them on our forum. Simkin.

[RiversW in reply to Simkin]

I agree with Simkin 100%. Both Sue and Jools have been incredibly helpful to me. I am dopamine agonist free for over 2 months now and with the help of a the low dose opioid Buprenorphine, sleeping like I haven't in 30 years. Good luck. Rivers

[Simkin]

That is such great news DocCookie. This forum has been my saviour as no-one else I know understands how much RLS folk suffer. Friends just say they don't understand & rather make light of it all.I have got a lot of medical friends and none of them had heard about RLS until they met me. It is just so wonderful to talk to people who absolutely & completely understand.

[DocCookie in reply to Simkin]

Truly. It is so great to hear from others who have this problem. It is awful to want to sleep, to try to sleep and to be awakened by the sensations in my feet and legs. I am hoping for a solution and am trying everything that Sue and all of you have suggested. I thank you again. DocCookie