RLS diagnosis

[MummaE]

Hello

I’ve recently joined and am learning so much for everyone sharing their experience, so thank you all!

In 2016 I was experiencing neuropathic symptoms from the waist down, thought to be neuropathy. I had neurophysiological studies, after which the neuros said I had RLS. I meet all of the five criteria except for criteria 1, the urge to move my legs. However I do have constant fidgety legs but I am not making a conscious effort to move them . Does this mean my diagnosis is not correct and it could be something else? Thank you in anticipation.

[SueJohnson]

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

It does not sound like RLS as the urge to move your legs is the most important of the 5 criteria. However it might be PLMD. You could ask for 1 or 2 days of ropinirole. If this stops the movement then it is PLMD. However DO NOT CONTINUE TO TAKE IT! Just use it for diagnosis. It is no longer the first line treatment for RLS and PLMD which are treated identically. The following information applies if it turns out to be PLMD:

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) [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 uptodate 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, 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, 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

[Joolsg]

The MOST important is criteria 1.If you don't have the unstoppable, unbearable need to get up and move around, it doesn't sound like RLS.

Does it stop you falling asleep?

Have you had a sleep assessment?

What symptoms made you go to the doctor? Pain, numbness, tingling? What tests did they carry out? MRI, nerve conduction tests.

Final question, which hospital are you under?

There are many conditions that are misdiagnosed as RLS, like peripheral neuropathy or akathisia.

Getting the diagnosis correct is essential because the treatment for neuropathy makes RLS worse.

[MummaE in reply to Joolsg]

Thanks Joolsg.

Doc originally thought it was neuropathy. Had MRI which did not show any nerve root compression or issues that could be causing symptoms. Also had nerve conduction tests, and report from neurophysiologist stated that it wasn’t neuropathy, and that the symptoms were RLS.

I have all of the symptoms except the urge to constantly move . (Pain from waist to feet, tingling, burning, creeepy crawlies, etc). Thank goodness I am lucky and it’s not severe, and mostly bothers me at night when I’m inactive although sometimes during the day too. I’ve checked out the conditions you mentioned and my symptoms don’t fit the criteria for akathisia and neurophysiologicist ruled out neuropathy.

I do recall discussing at at the time and was told that because even though I did not have urge to move limbs, it didn’t rule out the diagnosis of RLS, as everyone experiences it differently. How we this was 9 years ago and maybe the criteria for diagnosis has changed. My last ferritin level a couple of months ago was normal. Haven't had a full iron work up but will ask next time I see doc. I manage the pain with co- codamol.

[SueJohnson in reply to MummaE]

If the ropinirole doesn't stop the symptoms look up akathisia again because it sounds like that. but do try the ropinirole.

You say your ferritin was normal but what is normal for others is not normal for those of us with RLS. Ask for the actual number and post it back here.

[ChickenTwisty in reply to MummaE]

It is not a urge to constantly move legs. The urge to move might be rare. It is an urge to move your legs that occurs in the evening, (initially at least, If you have been on DA for an extended period this may have extended in frequency, in severity, in location of symptoms).

[amrob123]

I have PLMD. PLMD usually happens when asleep, but not always. I have involuntary movements of the legs but have never been able to properly ascertain whether those movements are periodic limb movements or restless legs.If you give a more detailed description of what the movements feel like etc, others may be able to say whether they have similar experiences.