New Member looking for advice

[ChilliChocolateLover]

I am 55 years old and I've suffered intermittently from RLS for many years but over the last couple of months it has been almost every night. It has really started to interfere with my work and life in general. I have tried some lifestyle measures but never gone further than that. I was wondering what people would advise as a next step. I'm not keen to start dopamine related drugs because I've heard they can make things worse in the long term. Many thanks

[Madlegs1]

Wise choice not to go near DAs.

What meds are you on, altogether?

Have you had an iron panel blood test? What was the ferritin number?

Do you keep a food diary to pinpoint any possible triggers?

[ChilliChocolateLover in reply to Madlegs1]

Hi there, my ferritin is 50 at the last reading. I have been keeping a food diary but haven't found any links except possibly worse with spicy food. I am on lithium medication which I believe can make RLS worse and I'm trying to reduce the dose

[Joolsg in reply to ChilliChocolateLover]

Then your first step is iron pills every other night to raise serum ferritin above 100ųg/L, preferably 200ųg. An iron infusion would be the quickest route and, as 60% show dramatic improvement, would probably resolve your RLS and you could be med free.Also review and safely replace all trigger medications like anti depressants, sedating anti histamines, statins, beta blockers, PPI gastric meds.

[SueJohnson]

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

Have you had your ferritin checked? 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 including in a multivitamin 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, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, 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.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[ChilliChocolateLover in reply to SueJohnson]

Thanks for all that information. I am female and live in the UK. I did have my ferritin checked recently but I was taking a supplement and hadn't fasted. It came out at 50. Medication wise I am currently taking lithium and thyroxine. I believe that the lithium can aggravate RLS and I have tried reducing the dose without much benefit to date. I think I am reluctantly at the stage of requiring medication as the RLS is interfering with my ability to work and just enjoy life. I will definitely be asking to avoid dopamine drugs and I will take the mayo clinic info. with me to back up using other options. It is great to have found you and I value all the help you are offering

[SueJohnson in reply to ChilliChocolateLover]

Then your ferritin may have been even lower than 50. If you can get an iron infusion that would be great but it is hard to get one without paying for it. Otherwise take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate 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 you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. 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. Since you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

I have not found that says lithium makes RLS worse.

[Pippins2]

Hi you've had great advice but in the meantime you could try Cocodamol which are available over the counter in the UK. Although they only contain a low amount of Codeine if you take 2 it may just take the edge off .

[ChilliChocolateLover in reply to Pippins2]

Thanks for that I might give it a go

[Pippins2]

I also bought a Therapulse which is a device you put around your leg and it vibrates its a good distraction.

[ChilliChocolateLover in reply to Pippins2]

I’m trialing one of these at the moment but sadly I’ve not had much benefit

[jebsat]

I suggest accupuncture. I had several sessions and felt some improvement. I have tried gabapentin and ripinerole and both made my legs worse. I am trying to avoid meds if I can. They caused weight gain that at 56 is impossible to get off.