Hello everyone. I'm Del and I have, what I consider to be SEVERE RLS.This stops me sleeping at night and I am continually shaking and stretching my legs to alleviate the feelings. Unfortunately, this doesn't help and I end up getting really stressed and depressed!! By the time I have to get up for work I'm already exhausted.
Does anyone out there get the same?
I would love some advice on how to deal with this. I'm trying to get an appointment to speak to my GP for some help, but it's impossible to get one.
Take care
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Delpops
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You do need an appointment urgently to get full iron panel, morning, fasting bloods.Raising brain iron resolves the majority of cases.
Go to RLS-UK website and read about diagnosis and treatment.
Are you on other meds? Please list them in your Bio.
Many actually cause or worsen RLS. Sedating anti histamines, cough and cold remedies, anti depressants, statins, beta blockers and PPI gastric meds are the main culprits.
In the meantime, try alternative remedies like magnesium bisglycinate at night.
Do NOT let your GP prescribe dopamine agonists like Ropinirole,Pramipexole or Neupro patch. They are no longer first line treatment because of the high rates of drug-induced worsening and Impulse Control Disorder.
Start by raising serum ferritin above 200 by pills/iron infusions and safely reviewing and replacing trigger medications.
Then, if RLS is still severe, you can start pregabalin as per RLS-UK website.
Welcome to the forum. You will find lots of help, support and understanding here.
I agree 100% with what Joolsg said. You may need to go private if you can afford it. Where in the UK do you live?
To expand on what she said. Stop taking any iron supplements 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.
Dopamine agonists (DAs) 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. Beginning dose is usually 300 mg gabapentin (75 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 uptodate on it atHttps://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, 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.
Hi Del. I am also in the UK. 6 months ago my Doc prescribed Tramadol. It has stopped the rls completely. It has a risk of losing its effectiveness in time, but so far its been great.
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