Help with rls

[Glenr78]

Hi good afternoon I'm glen and I'm hoping someone can help me when I was 17 I joined the army everything was fine then I started to get theses horrible feelings in my knees legs and elbows the only thing that work was shaking my body and pacing around the house but that didn't always work i did reports it to the med team at camp couldn't find anything so ended up leaviing on medical grounds was homeless after that for a while, the pain wouldn't go away finely got sorted and off the streets found a doctor who thought it was tennis elbow but it wasn't 😔 he gave me dihydrodeine and paracetamol 2 tablets at night wow my 1st pain free night in years but as time went 16 years ive had to up my dose to 6 tablets a night that helps my knees at night but not my elbows im currently getting 2 hours a night sleep spoke to my gp and she blaming it on addiction wont listen to me but don't know what else to do please help

[SueJohnson]

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

First let's be sure you have restless leg syndrome (RLS). 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.

Do you meet these criteria?

Assuming you do. 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 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, 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.

[Glenr78 in reply to SueJohnson]

Hi Sue thanks for your reply I've got my record but not sure what I'm looking for I've sent this hope this helps thanks glen

Iron report

[Glenr78 in reply to Glenr78]

Forgot to mention yes I meet the criteria 6.7 a week at night and when I sit down during the day for ten minutes my knee starts or my elbow or both .also on gabapentin for my arthritis

[SueJohnson in reply to Glenr78]

How much gabapentin are you taking and when?

[Glenr78 in reply to SueJohnson]

300 mg 6 times a day

[SueJohnson in reply to Glenr78]

You don't need to take it 6 times. 3 times should be sufficient at 600 mg each. Take the last dose 1 to 2 hours before bed to help your night time symptoms. Try this and if it doesn't work as well you can always change back.

[Glenr78 in reply to SueJohnson]

Thanks I'm willing to give anything a go, got that bad last night was thinking about hacking my leg off bit extreme I know but that's how sore it gets 😥

[SueJohnson in reply to Glenr78]

Your ferritin is 53 when it should be 100 or more. If you take blood thinners, check with your doctor. 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. If 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.

[Glenr78 in reply to SueJohnson]

Thanks again it's a lot to take in lol I will try sum off these anything just for a good sleep and no pain so would you say I have rls then ? I've got anything telephone appointment on Friday next face to face was end off march and I'm in Blackpool Lancashire

[SueJohnson in reply to Glenr78]

Dr. Bagery - at the Barberry Clinic Birmingham. He is helpful and knowledgeable about RLS. I don't know anyone closer.

[Glenr78 in reply to SueJohnson]

Thanks for the information Sue

[SueJohnson in reply to Glenr78]

I assume you are taking your dihydrocodeine every 4 to 6 hours to avoid mini withdrawals.

As for your doctor, show her the Mayo Clinic Updated Algorithm. If that doesn't work ask for a referral to a neurologist and make a new post with the name someone will be able to tell you if they know about RLS or reply here where you live and we may be able to give you a name that you can ask to be referred to.

[Lacey_]

Hi and glad you’ve found this forum, there is so much helpful advice and knowledge on here. It is frustrating (but not surprising) that you can’t get this level of help from your GP. Good luck,

[Glenr78 in reply to Lacey_]

Hi yeah it's been an eye opener I've only just heard about rls recently on the plus side my doctor rang this morning asking my symptoms and he even said sounds like rsl so got appointment tonight so fingers crossed

[RLSdaily]

There is so much help on here. I hope you find relief and rest.

Also there are so many things that aggravate RLS, medicines and foods.

Somethings bother people more that others. I am very sensitive, will get RLS daytime or nighttime almost immediately with artificial colored foods/ artificial colored medicine. I am in the US but for instance rapid release, acetaminophen. It's blue and red capsules. My multivitamins even have to be dye free.

Good luck

[Glenr78 in reply to RLSdaily]

Wow didn't know that,I really can't put my finger on anything that starts it off like you I get it during the day as well,whenever I sit down within a few minutes either my elbows of knees start or both😡

[Ischmael]

I’m so sorry Glen. It’s horrible when doctors don’t believe you because they just don’t understand. It kind of sounds like you might need a different medication. Gabepentin has helped me with RLS but I still have breakthrough issues. I’m currently looking for a neurologist. Best of luck to you.

[Glenr78 in reply to Ischmael]

Hi thanks for the reply and I get you about doctors sum just laugh in your face about it my daughter has fibromyalgia took years and years for them to believe her😔I'm back there this evening im just praying he listens

[Elisse3]

Just to confirm do you have the urge to move an urge you can’t resist. It’s the important part to be diagnosed as having RLS

[Glenr78]

Hi yes I get that urge constantly all I can do to ease the pain is walk about or kick my legs out or elbows in force and that doesn't ease it for long been that way for 23,24 years

[Glenr78 in reply to Glenr78]

And if I don't move it the pain is so much worse