30yr hx of RLS, and I've pretty much worked through Ropinirole, GABAA, PreGABA, Benzodiazepines (sleep), narcotics (currently Hydrocodone 10-325 approximately 3xdaily. Over the past two years of consistent PreGabalin (75mg caps 4/d concentrated in the evening 6P-9P) I have gained a considerable amount of weight - nearly 40#! But its the only combination of meds that's allowed me to get more than 2-3hsleep per night and remain functional during the day.
My question is has anyone tried to manage the weight gain independently with some of the newer agents out now (Mounjaro / Wygovy)? If they've been successful, has there been any impact of their RLS good OR bad?
Thanks!
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Cmorc
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They are expensive and you have to take them for life. If you come off them the weight rapidly comes back. There has been some reports on reddit that they made RLS worse, but no studies have been done and you would quickly know if that occurred with you.
You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Pregabalin is much more likely to cause weight gain than pregabalin. Multiply the pregabalin amount by 6 to get the correct dose. 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. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
If this doesn't help another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. 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. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and 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 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.
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.
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.
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, C, 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.
Can you tell us where you are?Your Bio mentions melatonin. That worsens RLS for most people, so best avoided.
As SueJohnson advises, you can try a straight switch to the equivalent dose of gabapentin.
If that doesn't help, depending on where you are, you can try a longer half life opioid. In the USA, methadone is more commonly prescribed, but Buprenorphine is now also being used.
Opioids can be highly effective at low dose and do not cause weight gain.
I can't comment on whether the weight gain medications worsen RLS, as I haven't come across any studies yet, although they will start to appear soon.
The body can get it's energy from glucose or ketones (made from fat) but high blood sugar (glucose) is toxic to the human body, especially to the nerves, therefore the body is programmed to preferentially burn it first. What it can't burn it stores as glycogen in the muscles and liver but when those stores are full the liver turns it into triglycerides which go to build up fat storage. This means that in order to stop putting on more weight and start to burn off your fat stores you must reduce your intake of carbohydrates which are the source of the glucose. It would be advisable if you consulted a doctor conversant with the LCHF (low carb high fat) diet and reduce your carb intake over two or three months to allow your body to adjust. Other things which are beneficial is to excersise more (especially resistance training) as this builds up muscle and the bigger the muscle the more glycogen it can store, and practise time restricted eating (intermittent fasting) by delaying or skipping breakfast and eating your evening meal earlier. This allows a longer window of low blood sugar between your last meal of one day nd the first meal of the next day which forces more fat burning.
An added advantage of lowering your blood sugar is that it will lower your chronic inflammation and reduce RLS.
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