RLS in Quads

[RLS2442]

Hi everyone, I get RLS very severely on my quad muscles which keeps me awake at night and feels like adrenaline and gives me that almost anxiety feeling you get when a little stressed. It’s hard to stretch the quads but it feels like electricity running through my quads and like an ache but not a tired ache it feels full of energy. It’s really horrible. Does anyone else get it in their quad muscles and has any advice I’d really appreciate it many thanks.

[SueJohnson]

I don't but others do.

I assume you meet the following: 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.

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Are you taking any medicines for your RLS? You don't mention any. If not, 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, foods high in glutamate, ice cream, eating late at night, 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.

[Joolsg]

Aerobic exercise in the late afternoon/evening can worsen RLS. Aerobic exercise should be done in the morning/ early afternoon. Stretching and squats can help.

What medications are you taking?

My RLS started in my lower limbs but spread EVERYWHERE when I augmented on Ropinirole. I switched to Oxycontin and pregabalin and the RLS returned to the lower limbs only.

I'm now RLS free on Buprenorphine.

[RLS2442 in reply to Joolsg]

Thanks! I’m only taking an iron supplement at the moment. It’s so hard to stretch the quads.

[Joolsg in reply to RLS2442]

Agreed. Take the iron supplement once every other day. It increases ferritin faster.

[WideBody in reply to RLS2442]

It's important to take iron correctly. I took iron for a year in the morning with my coffee. My ferritin went to 200 but it really didn't help my RLS. I wish someone had told me, so know I am telling you. Forgive me if I am being presumptuous.

Take Iron at night on an empty stomach. Nothing to eat two hours before or one hour afterwards. Try to take iron about 90 minutes to 2 hours before bed.

Taking iron at night, is when the brain needs it the most. Taking iron on an empty stomach beccause the proteins in the stomach will bind to the iron and cause "gastric distress" a.k.a. black tarry stools. When I follow the rules I never have any issues.

Take iron with Vitamin C. I don't have the chemistry, but it breaks down FE+++ to FE++ which helps absorption.

Also important for me. Check your Vitamin D levels. Low iron and low Vitamin D are correlated. Vitamin D is heavily involved in iron absorption, and metabolism. Vitamin D blocks hepcidin which blocks iron absorption. There is also evidence that vitamin D may be protective against anemia by supporting erythropoiesis.

Now back to the original question. When my RLS was bad, it was everywhere. So yeah, I remember some rough nights with my quads, hamstrings and calves. But then I have said to my wife a couple times. "Remember when it was just my legs?"

Good luck with the iron. Don't skip the Vitamin D levels. It has been harder for me to raise my Vitamin D levels than to raise my ferritin.

[RLS2442 in reply to WideBody]

Thank you so much for taking the time to reply and offer advice. I used to get it in calves years ago but not for a long time now thankfully it was dreadful. Now it’s thankfully just the quads. The science behind all this is fascinating.

[Nikos64]

I rarely get it these days … but yes it’s not unheard of. I used to get it before going on opioid treatment and when I augmented on pramipexole and tramadol.

[Baz33]

Yes ,that's mine and in my wrists. I've just dropped to 100mg pregablin as 200mg was too much, I'll get to about 1pm then need to take 2 GREEN VALARIEN but I don't wake up in a fog.Also.try bio freeze on your Quads x

[RLS2442 in reply to Baz33]

Thank you, what’s Bio Freeze? Is that a cooling gel that you rub in the skin? I used a hot water bottle last night and that helped.

[Baz33 in reply to RLS2442]

Hi, yes, cool helps some people,heat others .This is bizarre but I have a cup of max strength level 5 coffer and some chocolate with my ibrufen and I'm knocked out, everyone is different, it's a lottery to see what works for you .x

[RLS2442 in reply to Baz33]

Thanks

[Frustrated-RLS]

I get this periodically (usually for a finite period, like a few weeks) and it is awful. I take gabapentin for RLS and when the quad thing occurs I have to increase my dose and also take ibuprofen before I go to bed and sometimes during the night, although this doesn’’t completely solve it. I do find that stretching quad area and using one of those hard plastic rollers on quads helps a little. I’m sorry though—I have not cracked triggers that make this flare up for me, I have just now had it happen enough that I wait it out and eventually it goes back to just “regular” RLS treatable with my usual dose of gabapentin. In addition to iron discussed elsewhere in responses (my ferritin is over 100 and I take gentle iron with vitamin C every other day on an ongoing basis) may be worth talking to your doctor about gabapentin or pregabalin?

[RLS2442 in reply to Frustrated-RLS]

Thank you so much yes I will talk to my doc

[Baz33 in reply to RLS2442]

My experience with gabapentin...awful.depression, the pregabalin works a treat just can't manage a high dose .....

[Frustrated-RLS in reply to Baz33]

And for me with gabapentin, no side effects at all. Not even the dreaded weight gain!

[Baz33 in reply to Frustrated-RLS]

I lost my appetite on it completely, its amazing how we all respond differently...I've just been buying some berocca and studying the ingredients as I now do with anything I take .....

[Munroist]

My quads get very jumpy after a hard bike ride and it lasts 2-3 days. I find it's worse if I'm getting back into exercise and once I'm training regularly it's a bit less of an issue.

However it's not too hard to stretch quads - I do the first two of these exercises every night when my legs wake me up and find they help. I may try the last one as well as you can do it in bed!

It's important to keep your core and pelvis engaged as they describe, to avoid straining your back and don't overdo it as it's sometimes hard to gauge how much the quad and hip flexor muscles are stretching and I've had some painful results from pushing too hard in the past.

healthline.com/health/exerc...

[RLS2442]

Thank you so much for the advice!

[RLSgirl]

Not necessarily RLS-related, but the adrenaline/Anxiousness and muscle movement symptoms sound a lot like what I experienced when I first got ME/CFS.

I believe my Adrenals were on one last kick trying to create homiostasis before they gave out. Increases like that are often the first sign of adrenal fatigue. you often have higher cortisol levels in the initial stages. and they can create symptoms similar to what you are describing.

I'm not saying that you are headed for adrenal fatigue. it's just something to keep in mind.

[RLS2442 in reply to RLSgirl]

Thank you for your reply. I will mention this to my doctor when I go see them soon. I hope you are able to find a way to live a decent quality of life with your diagnosis. That sounds truly awful.

[RLSgirl in reply to RLS2442]

thank you!

It has been a long struggle but I have made a lot of improvement in my health over the past few years. If you don't get help or answers from your Doctor, don't give up. keep looking and be your own advocate. it took me almost 2 years to even get a proper diagnosis. a lot of doctors just don't have a clue. I finally went to integrative/Functional medicine before I got any answers or actually helpful help.

[RLS2442 in reply to RLSgirl]

Thanks yes I think that’s very good advice indeed as GP’s (in my experience) are very good at keeping people at arms length or send them down the wrong pathway due to either lack of knowledge or financial constraints placed upon them. Good luck with your own health journey I wish you the best.

[Nitelite]

I get it in my quads and find that massage with CBD cream helps

[RLS2442 in reply to Nitelite]

Thanks