Restless BODY

[GrodeMaster]

At its worst, RLS will creep into my arms and lower torso. How many have experienced this, too? The condition even destroyed my ability to be intimate, to an extent. I've never been able to hold anyone without the curse of RLS paying a visit, preferring instead to get up and leave with its onset.

[SueJohnson]

That's the definition of augmentation. See my other reply to you on your other post.

[GrodeMaster in reply to SueJohnson]

Thank you!

[707twitcher]

Augmentation changed my symptoms from just legs to almost everywhere. The sensation in my shoulders and upper arms was awful. Even 8 months after weaning off pramipexole, when I do get break-through symptoms (requiring taking a little more buprenorphine), they are worse in the shoulders/arms.

[Joolsg]

Are you taking Ropinirole, Pramipexole or Neupro patch? RLS in other body parts is common on these meds.If you've never touched them, you seem to have severe RLS.

You will need to speak to your Doctor about medication. Pregabalin or a low dose opioid.

[Zenawarrior73]

hi I suffer with sensations in my upper body and abdomen but also have benign fasiculations that happen everywhere which is the ultimate definition of a restless body I’m still trying to work out my triggers and working hard to find my new normal

[iChya]

Overtime the last decade my RLS has spread to the left arm and become a daily if not constant occurrence.

No medication for RLS.

That decline over the last ~8 years sort of matches having major cognitive issues/chronic fatigue, that was eventually diagnosed in 2022 (at 56) as "adult onset" ADHD; took Elvance for the AHDH - unsure if that had an impact (cognitive issues).

Stopped taking Elvance last year due to national shortage - RLS has not changed.

Now starting to look at alternative ways to manage the RLS pain as not being on Elvance is affecting my ability to work. And the almost constant pain is impacting my ability to cope with grief triggered depression.

[SueJohnson in reply to iChya]

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), Neupro 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. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 up-to-date on it at Https://mayoclinicproceedings.org/a...

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, 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, C, 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.

[Iloverls in reply to SueJohnson]

Hi Sue

Just started looking at this site. It’s incredible how much understanding and knowledge you have about the condition. I am very grateful especially to you and to all of the contributors here.

So ridiculously strange that there are as many different triggers and forms of relief as there are types of bodies.

Anyway, if just made an appointment with Prof Brendon Yee as I can’t find a better specialist in Oz and I’ve tried quite a few. I did read somewhere here about his advice to go cold turkey so will be aware of that.

I’ll also check back here when I see what advice I get from him.

sending best wishes to you all and huge gratitude to you Sue.

Colleen

[SueJohnson in reply to iChya]

Gabapentin and Pregabalin help with pain too.