I could really use someone to talk to about rls mine has been so bad to the point where I can’t sleep

[Makenzie_01071999]

I could really use someone to talk to about rls mine has been so bad to the point where I can’t sleep

[Joolsg]

Hi Makenzie and welcome.Can you give us some more information to help us help you?

What meds are you currently taking, including any pharmacy bought over the counter?

There are so many everyday meds that can trigger RLS, anti depressants and anti histamines being the most common.

Have you had your full panel bloods taken? Over 60% of RLS patients see dramatic improvement by raising serum ferritin and serum iron levels.

To start, read the latest guidance on RLS by the top experts.

mayoclinicproceedings.org/a...

[Madlegs1]

Welcome-- there are loadsapeople on here-- many lurking and listening! It's a great place to rant and give out about our condition.

In addition to Jools advice, just let out about your symptoms?

How are you affected and what exactly are your symptoms?

Looking forward to hearing back from you soon!

[LotteM]

Welcome. In addition to what Joolsg and Madlegs write, do some reading here on the forum. Not always fun, but it may help to get the feeling that you are not alone, and that there is loads of information. You'll learn about common do's and don't s, but also that we are all different.

But first ans foremost, iron and medicines to avoid.

[SueJohnson]

You have been given some good advice by Joolsg, Madlegs1 and LotteM. To expand on Joolsg's advice: 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 numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients as Joolsg said. If your ferritin is less than 75 then 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 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 and preferably at night. 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 have him prescribe gabapentin. Beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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 Joolsg gave you a link to 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