Rls wont stop

[200911]

I really cant handel rls anymore

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Since I don't know what you have tried, I will assume you haven't tried anything.

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...

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.

[Joolsg]

Welcome,Can you give us some information? Are you currently taking any medications?

If you're taking Ropinirole, Pramipexole or the Neupro patch, you are highly likely to be experiencing drug induced worsening.

So, please list all your current medications, including supplements, and we can guide you in the right direction

[Buckem]

I rarely comment on anything, however I know exactly how you feel! Sometimes I want to just end it due to the relentless torture this disease hands out!! All I can tell you is this forum can and will save your life! Trust the advice you will get from the people monitoring this website. Most of the time they know way more than your doctor and you can arm yourself with the knowledge you will get here and use it to get better treatment for yourself!! Trust me I did it myself!!

[Oscarcat63]

Hi there.Please take on board the advice given in the above comments.

It is particularly important about listing all medications and supplements you are taking.

Please don't be afraid to mention any that could be seen as 'stigmatising'.

So have no fear of mentioning anti depressants or anti psychotics, tranquillizers, naltrexone, anti epileptics, herbal, homeopathic remedies, illegal drugs or any other thing you have used.

None of us is perfect, but we can try to help and you can always send a personal message to any of us.

Wishing you the best

[SleeplessinNC]

Advice here is gold standard. Please know that you are not alone in your despair, frustration and pain. We all have our stories, dramatic and life changing. RLS can seem unbearable and it makes me lonely, pacing the floors at night. We would welcome your story when you’re ready. Sending ✨good vibes ✨

[Merny5]

Welcome to the forum. I’m so sorry for your pain! Stick with this group. There is help.

[johannasuar]

that’s why it’s called the wretched desease, it can drive anyone crazy. Aren’t you on any medications? I feel so bad for you.

[Johnson326]

Please find a doctor who is willing to prescribe you buprenorphine, perhaps a 2mg dose that you can split and take it orally under the tongue. It will make all the difference in the world to you.

[Kaarina Administrator]

Dear 200911, please let us know you are okayish. As you can see from the replies to your thread we care about you and wish to help. You are not alone with this. Please reach out to us again so we can offer you more help and support.