good news and bad news

[Operaqueen]

I have suffered from RLS for probably 15 years or more. It became impossible to do anything involving sitting in the evening so cinema and theatre out. I was taking pramipexole but thankfully got off that after it augmented. Now on gabapentin. Last year my osteopath sent me for xrays and following that I had an operation to fuse two of my vertebrae at the base of the spine. The corroded cartilage had meant that one of the vertebrae was pressing on nerves. After the op the RLS completely disappeared for the daytime and evenings - I am able to sit and watch television without having to get up every 15' to walk. However nighttime is different. I usually get to sleep OK but then wake up at 2am -ish and getting back to sleep is difficult. Constantly have to get up and walk around - usually for 90' or so. I am taking 200mg at 9pm 300mg of Gabapentin at 11pm but feel like I need more around 6am. The good news is that the only way to get rid of the restlessness is to make love - that really works and I usually then sleep for another 4 hours! Fortunately I have a collaborative partner. I noted Jools comment yesterday about ferrous bisglycinate and will endeavour to find some. Think that will help.

[Madlegs1]

Good on you!👍😝

You could trying upping the Gabapentin, and make sure you're not taking any form of magnesium within 3 hours of the Gabapentin.

[SueJohnson]

You are taking a low dose of gabapentin. The usual advice is to increase it by 100 mg 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. 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 as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason.

[SueJohnson]

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 that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, 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.

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 or making love as you found out, 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.