Hello, I joined this forum to help support my partner who has had RLS and PILM for years and we both gain such a lot of help here. He’s currently taking Pregablin, three weeks in.
I seem to be starting with similar symptoms (oh joy!) which were mild but now getting worse. I was wondering what advice you might give to someone just starting on this merry go round!!
I take magnesium glycinate at night and turmeric at the moment. I’m thinking of starting with iron supplements as well.
I am loathe to ever taking medication….. for now anyway.
Many thanks in anticipation.
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Noodlenann1
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This is the advice I give and some probably repeats what I told you for your partner. You may not want to take medicine now but as it gets worse you will need it so when that time comes refer back to this.
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), Neupro patch (Rotigotine) 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 up-to-date 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, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
I assume that you're taking turmeric for its anti inflammatory effects. I'm sorry to say that you'll have to ingest an awful lot of turmeric i order to get a significant dose of its active ingerdient curumin. Why noy clean up your diet so as not to cause somuch inflammation in the first place? There are lists online of 'foods that cause inflammation' and they're all in high concentrtions in processed foods.
Thank you for your reply Eryl., and what you thought might be helpful advice for me.
Yes I actually do have a diet of mainly anti- inflammatory foods, the turmeric supplements are exactly that, to supplement what I eat. I must say it’s really helped with easing joint stiffness! I don’t touch processed food.
I was posting here to ask what people might have found particularly helpful with RLS symptoms, to head it off before it gets worse …. If that’s at all going to be possible!
Hi. I don’t know what PILM is but I assume it must be in the same class as RLS, PLMS, and PLMD. I’m so sorry you are seeing signs of these disorders in your own body after watching your partner go through it. However I am intensely curious if you are able to alter the disease process behaviorally since you are catching it relatively early on. It’s something I wonder about often. It sounds like you’re doing a good job with your diet, but I would still recommend keeping a daily diary of foods, supplements, and activities as well as your symptoms (or lack thereof, if you aren’t experiencing them daily) to see if you can detect a pattern.
I think it’s great you are reluctant to begin taking prescription drugs to treat the symptoms. It would be wonderful if you could figure out your own triggers to avoid and things that work naturally to alleviate your symptoms (like exercises, stretching, massage, or perhaps certain supplements) and take steps to somehow avoid letting the condition fully take over.
I deeply regret my own lack of curiosity in my symptoms when they first started. I ignored them as they progressed and by the time I finally went to the doctor the symptoms fully ruled my life (I couldn’t sleep, the spasms and jerking could happen anywhere in my body at any time, and were actually sometimes quite painful). So when I was offered drugs by the neurologist I didn’t even hesitate. It was the drugs which led me to this forum. I’m happy for you (and a little jealous) that you have found the forum before starting any drugs! I really hope using the expertise on this site allows you to find your own non-drug alternatives to alleviating the symptoms or reversing the disease in its infancy (if that’s even possible). I’ll be rooting for you! Please keep us posted.
EDIT: Is PILM Periodic Involuntary Limb Movement? If so I like that name much better because it would encompass the involuntary movements that happen during both the day and the night which was exactly my situation before finding treatment with medication.
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