RSL advised would be appreciated

[FriedChicken101]

Hi I have RSL for over 12 years now, doctor said to take iron tablet and that didn’t work. It been getting worse by the year, I had to stop driving because I almost got in to accident. Ended up leaving university because of RSL. Now I can’t even sleep through a night properly and it’s just so frustrating. Doctors don’t really help much keeps on giving me iron tablet which doesn’t help at all. I even stopped going to the doctor because they are just useless at this point. If anyone has any tips or suggestions please let me know I would really appreciate it. Thank you 🙏

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Your doctor is not completely wrong in giving you iron tablets but did he check your ferritin first. If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. 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.

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. (Pregabalin is more expensive than gabapentin in the US.) 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 at Https://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, estrogen including HRT, 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.

[FriedChicken101 in reply to SueJohnson]

Thank you so much I will do what you suggested and get back to you if there is any improvement.

[AhabHick in reply to SueJohnson]

That was comprehensive. I also have rls. I started taking lions mane is that a trigger. I take 1800 gabapentin for this and neuropathies.

[SueJohnson in reply to AhabHick]

It is fine

[Joolsg]

Most RLS in women is caused by low brain iron.Many medicines cause or worsen RLS. Anti depressants, sedating anti histamines, statins, beta blockers, PPI gastric meds.

Can you list all your current meds?

As SueJohnson advises, you need a recent full iron panel blood test. Iron infusions dramatically improve 60% of RLS cases. You can get one on the NHS in a few hospitals. But it's difficult. If you live near St George's in Tooting, the Royal Cornwall in Truro or Salford, you may get an iron infusion more easily.

If you can afford it, you can get a private iron infusion at the Iron Clinic in Harley Street for around £800.

Raising iron should be the first step before meds are prescribed.

Do NOT let your doctor prescribe dopamine agonists ( Ropinirole, Pramipexole or Rotigitone patch).

If raising serum ferritin ( by iron pills/infusions) doesn't help, then you can start meds.

Epilepsy drugs are used to treat RLS. Pregabalin and gabapentin.

Fill out the IRLS chart ( available via RLS UK website) to assess severity and show to your GP when asking for a referral for an iron infusion.

[FriedChicken101 in reply to Joolsg]

I have epilepsy so at the moment I take lamotrigine 150m in the morning and night

[Joolsg in reply to FriedChicken101]

Lamotrigine shouldn't worsen RLS. Are you taking any other meds?Raising serum ferritin via iron pills/infusions is first line treatment.

If that doesn't help, pregabalin or gabapentin may be needed, buy you will need to check with your neurologist about taking them alongside lamotrigine.

If they are contraindicated, a long half life, low dose opioid can be prescribed. Buprenorphine or methadone.

But first, get your serum ferritin above 200 to increase brain iron.

[Ambler58]

Hello FriedChicken101 , sounds like your Dr is not concerned enough , don't suffer , request to see a specialist, good luck .

[FriedChicken101 in reply to Ambler58]

Thank you, they really neglected me on this saying it will just go away but it never did.

[Eryl]

Are you on a special diet for the epilepsy? A keto diet is the usual recomendation, that should help reduce the rls as well as avoiding refined seed oils (as in fried chicken). You also need to ensure that you're getting tbe right nutrients for nerve health e.g. omega3 oils and iodine

[FriedChicken101 in reply to Eryl]

No I didn’t even know there was a dietary recommendation for epilepsy. I will definitely check this out. Thank you ☺️

[DicCarlson]

True Ketogenic diet is very hard to follow - but read this article with variations for adults. Seems like a great resource!

epilepsy.com/treatment/diet...

[Myleghatesme]

Hot baths help but lay on the couch at night before bed dont sit or lean forward will put it off some I had the perfect recliner that helped but I find the more I do the worse my rls is

[FriedChicken101 in reply to Myleghatesme]

I haven’t done a bath in so long as I am not allowed to. I only do shower and even then can’t stay in the shower for too long. 😭

[RestlessNinja]

If you are seeing a GP tell him to refer you to a Neurologist. If he refuses to refer you, I would go and see another GP for a second opinion. If the condition prevents you from sleeping and iron hasn't helped, it's already severe enough to get a referral for a specialist doctor. If the GP prescribes you something for your RLS and doesn't refer you to a specialist doctor, take the prescription and go back to your GP after taking the meds for a few weeks. Tell him that the meds didn't help (if they didn't help!) and ask to see a Neurologist again. A proper diagnosis is essential to prescribe the right type of medication and also to exclude other severe conditions. I was so desperate to see a Neurologist that I even contacted a private clinic. The private clinic then needed a referral from my GP which I surprisingly received right away. I then contacted the private clinic and was told that the waiting list was as long as the one for the NHS. I then went back to see my GP again, told her about the same waiting times and surprisingly received an NHS referral straight away. It took a year to finally get a proper diagnosis and the correct medication.