rls maybe? I need help: im sat wide... - Restless Legs Syn...

Restless Legs Syndrome

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rls maybe? I need help

Mommabear123 profile image
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im sat wide awake for the

13th week in a row,I have graves and a total thyroidectomy and thought my thyroid levels were to blame for my insomnia as well as the heat now even in the cold weather I cannot get my left leg to stop moving and being so hot towards the evening and at night time currently satwith my feet on my cats cooling mat,I'm so frustrated as none of my doctors are taking it seriously and I don't know how to tell them any more times I'm pretty sure it's rls my thyroid is fine my folate levels are slightly low vitamin levels are fine and theyveout it down to stress , gave me 5 days of sleeping tablets then told me they couldn't help me until I've had my blood test had it on Thursday results are fine my work and my parenting are suffering from the lack of sleep and I need help to get them to take me seriously my feet hurt all the time even when sitting they're so hot. I've ordered some compression socks and a tens machine to try and see if it will give me some sort of relief but not sure it will any advice?

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Mommabear123
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SueJohnson profile image
SueJohnson

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. If it is RLS 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 as that is when your ferritin is lowest. 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 transferrin saturation is OK then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. 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. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that 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. 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. Most of the side effects of gabapentin 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 daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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...

Brandon703 profile image
Brandon703

Diagnosed

Brandon703 profile image
Brandon703

I would recommend you see a RL specialist/neurologist. I have never had heat with RL & have had for years. Also, as to blood work., your Ferratin levels need to be checked (part of iron testing but more specific).

CookiePooki profile image
CookiePooki

I'm so sorry for you. My doctor gave me clonazepam to sleep and I did . Rest is so important. More greater is for the last two weeks the RLS has completely stopped thanks to God giving me relief. I realize that God will not always answer our prayers as we pray but if it's His will BE WILL HEAL YOU. I am still taking tramadol but for the most part of every day my legs are quiet. I will pray for you mommbear123

Mommabear123 profile image
Mommabear123

Thank you for your replies, my doctors won't even look at any further tests at the moment says there's nothing else they can do for me. I said I think it's restless leg syndrome but they said no, ferratine levels kidney function etc all checked last month and they were all within range refuse to check any further bloods, my feet also don't feel hot per se, but like I've walked 10k and my feat kind of feel like I've been stood all day and they feel kind of sore and slightly burning even though I have a desk job, I am overweight maybe that's a contributing factor but I have no thyroid and can't get help for that either, they just say exersice more and eat healthier. I swim X2 per week and do yoga and Pilates at work so fairly active I've got compression socks for now and they are helping slightly but don't know what else to do for the best at the moment

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