Restless legs

[Kuma13]

I've had severe RLS for years tried different medications but nothing seems to work I would very much appreciate any suggestions

[Madlegs1]

Read through various posts here.

Especially Sue Johnson's replies to many of them addressing your own question.

[Oliversmom55]

I take Pramipexole and tramadol. About 5 pm. Works great. Still get breakthroughs but not often.

[Carijk in reply to Oliversmom55]

What is the pramipexole?

[Joolsg]

It would help if you told us what medications you're currently taking, including OTC meds.Many of us have been through all the available meds and have found a solution.

Some are on gabapentin only, others on Oxycontin, some on a combination. Others have found iron infusions settles their RLS.

[Kuma13 in reply to Joolsg]

I am taking pregabalin 25 mg twice a day

[SueJohnson in reply to Kuma13]

That's an extremely low dose. The usual starting dose is 75 mg, There is no reason to take it twice a day unless you have symptoms during the day. If you have been taking it for at least 3 weeks, increase it by 25 mg every 2 days until you find the dose that works for you. Take it 1 to 2 hours before your bedtime, According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily." If you take magnesium 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...

What about your ferritin?

[Kuma13 in reply to SueJohnson]

Thank you for your reply this medication is no good at all but maybe my doctor has given me the wrong dose

[SueJohnson in reply to Kuma13]

Of course it won't help at 25 mg. It is the first line treatment now for RLS.

Have you ever taken pramipexole or ropinirole or neupro?

[SueJohnson in reply to SueJohnson]

Checking your ferritin is the first thing that should be done for people with RLS which is why I kept asking about it. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel as Joolsg said. Stop taking any iron supplements including multivitamins that have iron in them 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 some advice.

[SueJohnson in reply to SueJohnson]

Meanwhile 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, 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, using a standing desk, listening to music, meditation and yoga.

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 in reply to Kuma13]

Show your GP the RLSUK website. It has a section on medications and doses and how to take them.Pregabalin should be taken ONLY at night. Starting dose is 75mg. You increase by 25mg doses up to the dose that relieves your RLS. Average dose is 150-200mg. Max dose is 450mg.

Did your GP do full panel fasting blood tests first? They're supposed to!

Raising serum ferritin above 100, preferably 200 helps the majority of cases. Iron infusions are the quickest way to achieve this.

Once you increase your Pregabalin to around 150- 200mg, you should start to see an improvement.

[SueJohnson]

What have you tried and what was your experience with them?

Have you had your ferritin checked and if so what was it?

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[Kuma13 in reply to SueJohnson]

I live in the UK and I am a woman

[drowsy]

Try ginger or fennel They are very strong against rls and don't poop out on me.

[joepublic]

Oxycodone (Targinact) definitely has worked for me

[Sleeplesniights]

I have started taking cbd oil and last night I slept all night with out restless legs

[Cowbsky in reply to Sleeplesniights]

_ Hi, please let us informed how things goes on.

_I am interested in CBD, eventually. I tried (it looks with some success) in the past, however it was masked with clonazepam, etc. Today, I am free from any medication; goind back eventually....

all the best and good luck

[Oliversmom55]

generic Mirapex. I take 1.5 and 2 Tramadol. At 5 pm works well.

[Theonlypetied]

I used to be on Pramipexole until I reached the max dose and augmentation started. Then it was hell for a few months coming off it. I’m now on Pregabalin. I’ve worked up to 250mg over a few weeks but I’ve started getting RLS again so last night I took an extra 50mg and will continue to do so in the hope I’ll be at the correct dose for me at 300 mg. All the best with finding a solution.

[Dgags]

I will simply share my experience. But first, I am not a medical person nor can I say that your experience would be the same as mine. Having said that, after trying various drug interventions to deal with my restless legs ( I have had restless legs for more than 15 years ) I finally found two interventions that work. By the way, I am 79 years old. I can now sleep 6 to 7 hours a night! One successful medical intervention is 5mg of Oxycodone. If you can get your medical folks to approve that prescription ( which can be difficult because of the opioid crisis throughout the world ) I might consider trying that. There is much evidence that a small dose of oxycodone is not addictive, though each person must check that out for themselves since our bodies differ so much. Opioids can be a very debilitating and threatening drug that you want to carefully watch your reaction to it. Secondly, a small amount of marijuana taken in sour gummies or in some other way works for me each night - a small amount for me is 5mg to 10mg. For some people it doesn't need to be 10 mg. It can half that or less. Again, if you can legally gain access to medical marijuana or recreational marijuana I would suggest that that could be a second intervention. If you do decide to try THC ( marijuana ) try to get an Indica strain of marijuana, not Sativa . Sativa provides more of a "high", which I presume you are not looking for. Indica doesn't result in so much of a "high" but does impact the brain in a way that helps with RLS. If you try marijuana I want you to know that if you haven't smoked or ingested marijuana in the past you should know that the first nigh or two of taking a small amount of marijuana you may feel a little paranoid, not badly so, but it even happens to me if I haven't ingested marijuana for some time. It's not serious, but it is something you should know might happen. After that first night, maybe a second night, that feeling or experience disappears for most people. I want to repeat. I am not advocating either of these as "silver bullet" or "miracle" cures. But both have worked for me after trying many different drug interventions that either didn't reduce my restless legs or caused so many bad side effects that I didn't want to take them any longer. The American RLS Foundation website has medical and research papers on these options. I want to wish you well as you try to find solutions for your RLS. Try to find a support group or at least other individuals you can share your experience with and learn from. RLS can be a lonely disease to deal with alone. You need people you can talk with about this struggle to deal with RLS.

[Rlssucks1]

Sometimes I am so sleepy and tired but my legs aren't. To combat this, I have stopped all sodium, sugar, and caffeine foods and drinks. I only eat sugar-free foods and drink decaffinated coffee and mostly water or caffeine free/sugar free sodas plus refrain from using salt when cooking. I will use a sodium free salt (Walmart). Also, I take magnesium when the RLS starts. Lowering my stress levels is also a small help. I hope this can help you.

[Summer220]

I have had RLS my whole life. I will not take any prescription drugs as they all have negative side effects. Through the years I have tried many natural remedies. Some worked for short period of time. The most beneficial for me was a Keto diet where all sugar is eliminated. I also found that coffee will settle my legs because it has niacin. I recently have included niacinamide (Vitamin B3) from Dr. Mercola. I used to have a few sips of coffee to settle my legs if I woke up during the night. Now I take a niacinaminde and it works great.