Restless Legs Syndrome

[BennyBolt]

I have suffered from Restless Legs Syndrome for many years. I recently had a major operation to remove an extremely large polyp from my bowel. My bowel has been reduced by app. 25%.

My previous doctor prescribed Pregabalin 125 mg. He said that he would not prescribe a higher dose because of the dangers. I accepted this. Unfortunately, my condition has not improved.

This weekend the weather has been extremely hot and humid My Restless Legs have got much worse, especially at night I did not sleep at all on Friday and Saturday nights On Sunday I felt like a Zombie and was unable to do anything that was meaningful. Today I feel slightly better but my legs are burning continuously and the tired feeling is starting to develop.

I have recently moved to sheltered accommodation due to my health

My new doctor is aware of Restless Legs and he has said he will try and improve my iron levels using medication I am taking Folic Acid and Ferrous Sulphate. I have regular Blood Tests every six weeks. My iron levels have improved slightly but not enough to help my restless legs I am very anemic.

I was shown a graph by my doctor recording my iron levels which showed a straight line since 2015.

Thank you. Any suggestions would be gratefully received Thank you for all your support

Kind regards,

William Henry

[SueJohnson]

You mention iron levels. Do you know what your ferritin is? That is the key to RLS not iron levels per se. If your ferritin wasn't tested, ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.

Take your ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium or calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. 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. Taking the test sooner will throw off the results.

If after your next test your results haven't improved you can take 2 tablets every night at the same time so they are 24 hours apart or you can ask for an iron infusion.

[Joolsg]

Benny,I am shocked that your GP has not referred you for an iv iron infusion. You should go back and ask to be referred asap to a haematologist for an Injectafer infusion.

Show your GP the links below and if your GP delays, write direct to your local hospital asking for the infusion.

Several hospitals n the UK have given them for RLS, including St George's in London and the Royal Cornwall in Truro.

Most doctors are slightly out of date and still believe iron infusions are dangerous. The modern formulas are much safer and risks much lower.

I really think you should demand help now.

The Mayo Clinic Algorithm for treatment of RLS, written by the International RLS Group recommends ic iron infusions in circumstances like yours.

mayoclinicproceedings.org/a...

sciencedirect.com/science/a...

[SueJohnson]

On the pregabalin, 125mg is a low dose for RLS. I don't know what dangers your doctor is referring to, but he is obviously ignorant. According to the Mayo Clinic Updated Algorithm on RLS which is basically the bible on how to treat RLS "Most RLS patients require 200 to 300 mg pregabalin) daily."

Print out the section in the Mayo Clinic Algorithm that deals with this at Https://mayoclinicproceedings.org/a... and show it to your doctor.

[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, 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.

[Henshaw241241]

Hi Benny I had rls for many years can't sleep walking a round out side then i went back to see my doctor then she asked me if I would like to see a nearogList and she checked me all over then she put me on pregabalin 75 mg 1 tablet 6 pm then. 4 at 9 pm I have never looked back don't wonder around a night very good hope this. help you Henshaw 241241