Searching for help. My wife is 70 years old and been suffering with RLS for around 3 years. As of the last 6 months it has got extremely worse. It will start in the evening time and roll into bed time where she has to get up 3 - 4 times per night in extreme agony, she has to walk about for ease. She is crying out in agony and getting very stressed and upset. She is now suffering with shortness of breath through it all. Our doctor only gave her pain tablets but nothing works. Can you, or anyone, help please.
We live in South Wales UK
Written by
Charisma2021
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Welcome to the forum. When she sees her doctor, she should ask for a full iron panel. She should stop taking any iron supplements 48 hours before the test and fast after midnight. She should have her test in the morning. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her ferritin to be over 100 as improving it to that helps 60% of people with RLS and her transferrin saturation to be between 20 and 45. If her ferritin is less than 100 or her transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Above all she shouldn't let her 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 she should ask him to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks to be fully effective. After that she should increase it by 100 mg (25 mg pregabalin)every couple of days until she finds the dose that works for her. She should take it 1 to 2 hours before bedtime. If she needs more than 600 mg, she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. (She doesn't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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) daily." Ifs she takes magnesium she shouldn't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Have her check out the Mayo Clinic Updated Algorithm on RLS which will tell her everything she wants to know including about its treatment and refer her doctor to it 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, 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, 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, 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 she is 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.
I'm sorry to hear this and that your GP doesn't seem to have provided any help
Can you tell us how the RLS started? If it happened suddenly 3 years ago, there may have been a cause. Sudden anaemia, kidney disease or starting anti depressants, anti histamines or statins.
Can you also list all the medications she's taking, including OTC remedies like cough or cold meds.
Has the GP done a full panel fasting blood test yet? If not, it's the first thing he/she should be doing.
My MD has me on 5 mg of Oxycodone every 6 hours. It helps, but I still have flare ups at times. Sugar definitely lights me up, as does alcohol. You might look at taking the Methylated B Complex B Vitamins. My Dr tested me and I found out that I was not absorbing the regular type of B Vitamins. Folate is essential in helping managing RLS. It literally changed my life once I started on the Methylated Vitamins. Good luck.
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