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Restless Legs Syndrome

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Buffs33 profile image
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I joined the group to find out more about RLS and in the first post I read, I may already have some answers..I've been experiencing RLS for about 6 months and also chronic pain all over my body, headaches and terrible brain fog. I've had a ct scan for the headaches and brain fog, all clear, I've had multiple blood tests all have come back normal? I take HRT and sertraline and just read in a post that sertraline can cause RLS? I was thinking I may have fibromyalgia? Has anyone any experience of this. I would appreciate any advice at all.

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Buffs33
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SueJohnson profile image
SueJohnson

Yes sertraline makes RLS worse for most. Safe antidepressants are trazodone and wellbutrin. The estrogen in HRT can also make RLS worse for some. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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) 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. 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. 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 of gabapentin and 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." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of them. 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 at Https://mayoclinicproceedings.org/a...

SueJohnson profile image
SueJohnson

Meanwhile 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 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.

SueJohnson profile image
SueJohnson

Have you been diagnosed with RLS? Headache, chronic pain all over your body and brain fog are not key features of RLS. As far as fibromyalgia, check on that forum for symptoms. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

Buffs33 profile image
Buffs33

Hi Sue, thank you so much for your reply. I haven't been diagnosed with RLS. My symptoms are a weird, annoying sensation in my left hip/thigh area that makes me have to move my leg. The creepy weird sensation is difficult to explain but it comes on in the early evening/bedtime. It prevents me from falling asleep and has now started in the early evening when I sit down to relax. Seems to be happening much more frequently now. Previously it was more sporadic.

Mum007 profile image
Mum007

I don’t know your age but could you be peri menopausal. There are around 33 symptoms of the menopause but most people only get hot flushes. Think I had about 28 of them the worst ones were fatigue and joint and muscle pain I take magnesium malate for migraines 🥴

jilk profile image
jilk

sounds like fibromyalgia, no matter what the label, All my symptoms of fibro (except restless legs) were removed by removing foods from diet to end up with carnivore ( you may need vegan???) worth looking at also Google (Vit B1 mitachondrias gateway to energy dr chandler Marrs) she mentions fibromyalgia etc there

Typicallygaslit profile image
Typicallygaslit

Apart from your health concerns, I think there’s good reason for checking whether the HRT actually suits you or not. I’m finding it’s over stimulating me and increasing all my troubles with sleep. Take some time off it and compare your notes.

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