I’m suffering can barely write. Have to keep moving legs arms the feeling is on my butt too. I cannot sleep.
I left a message with my psychiatrist to see if he can prescribe me something.
what med or any natural treatment has helped you?
The only thing that feels good is massage and lavender and almond oils
Is this a recent development or have you had it for a long time? If it's new, what has changed - perhaps in terms of medications or diet?
What meds - including over the counter as well as prescriptions - are you on, as many can make RLS worse. List them here for further advice.
There are drug treatments for RLS, but before you start anything have you had a full iron panel blood test? This should include serum iron, ferritin, total iron-binding capacity, and percentage transferrin saturation and should be measured in the early morning after an overnight fast (and after not taking any iron supplements for at least 2 days). Many patients with RLS have lower than normal iron stores in some regions of the brain and then iron therapy can be beneficial. Make sure that you're given the actual numbers from the test - not just an "it's normal" response - and come back here for further advice. Ferritin in RLS sufferers needs to be over 100, preferably nearer 200, and transferrin saturation to be between 16-50% (men)/16-45% (women).
Some including me find supplementation with magnesium (glycinate or citrate) helpful.
Diet can also be important: too much sugary food, artificial sweeteners in food and drink such as aspartame, too much caffeine (although this actually helps some) etc etc can all be problematic.
Look for Posts and Replies from members on here such as Joolsg , SueJohnson and Madlegs1 for further advice
sweetheart have you changed anything ? Diet, lifestyle, have you come off any medication ? Massage is brilliant, oils are great, have you looked at homeopathy ? Sending love ❤️
Hi!!! haven’t changed anything. I have tried some like Calm and restful homeopathy meds
I’ve had this for about a year but it’s worse now. I take Buspar, Zyprexa and Paxil.
Paxil is a SSRI antidepressant known to make RLS worse in some. A safe substitute is trazodone which also helps with anxiety or Wellbutrin.
thanks
Paxil made my RLS so much worse. But coming off it, even in swapping meds, is no sinecure.
1st off a psychiatrist is not who you need to see for RLS. You need to see a neurologist or someone who specializes in RLS. If you tell me where you live I might be able to provide you with a name. Most doctors know nothing about RLS or are not up to date and will prescribe medicines you don't want. I notice you have depression and anxiety. Most medicines for those make RLS worse for most. What medicine are you taking? If you tell me I can tell you if this is so and can provide a safe substitute. I also notice you took melatonin. That one too is known for making RLS worse. Ambien or Lunesta are the best for insomnia. If you are taking any other medicines or OTC supplements 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.
When you see your doctor as ChrisColumbus said ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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) unless there is some special reason s/he feels you need it.. 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. 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 of gabapentin and pregabalin 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) daily." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of them and don't take calcium within 2 hours. 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...
Thank you so much!!!!
Starr, please be very careful about starting gabapentin. I'm certain it helps people or it wouldn't be used so widely, but, well, read here.
It was prescribed to me at the beginning of my problem with chronic pain, and it did me permanent harm I wouldn't wish on anyone. 💜💜
fda.gov/drugs/drug-safety-a...
awww I sooooo appreciate you. (((((((Hug))))))
It's great that the hemp oil seems to work. If it doesn't continue to do so, don't be afraid of gabapentin or pregabalin. The study that Nothing_but-pain cited shows that only 49 people over 6 years out of 15.2 million people who take gabapentin or pregabalin had the problems mentioned. It can have side effects that you can't live with but it is easy to come off it if that happens without withdrawal effects if you do so slowly and it does completely controls RLS for many people including myself.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.
I also see you mentioned zyprexa. It is a dopamine antagonist which makes RLS worse for many. Geodon (Ziprasidone) is a safe alternative. Discuss this with your psychiatrist.
Thanks sooooooo much Sue!!!
a few people have mentioned magnesium and melatonin...i was taking them at bedtime and yes, indeed, they made my RLS worse. I now take them in the morning, because they are known to help getting rid of skie protein. Also, somewhere in posts to this site, the discussion of oxalates and collagen, gelatin...cutting those out of my diet has also helped..not cured..but helped...
Thanks I take magnesium morning and night and I stopped taking melatonin.
try taking your melatonin in the morning..or cut it out and just get some daily morning sun and avoid your device screens for 2 hours before bed. Also, take your b-complex at night..it really helps to relieve upper airway resistance....i also practice holding my tongue against the roof of my mouth every time i think of it all day. And it's starting to be the habitual position for my tongue..this helps at night with upper airway resistance also, and obstruction.
upper airway resistance? Oh thank you I’ve never heard of this before
You really should be seeing either a pulmonologist or a neurologist to treat this condition.
There are a few things you can try that are non drug approaches. Magnesium, B complex vitamins iron are good things to try before seeing a doctor.
Avoid caffeine .. in fact just cut it entirely off. Antihistamines, alcohol could trigger it.
Good luck .. hope it’s something simple.
ok thanks Nikos!
Pulmonologist? For RLS? What’s the connection between lungs and RLS, Nikos?
at first I also thought it was odd that pulmonologists deal with RLS. But please keep in mind that this ailment is tied to obstructive sleep apnea. OSA exacerbates RLS. Often times a CPAP device will improve RLS symptoms. That’s the only reason I can come up with why pulmonologists also treat RLS.
🤗😔
For me changing my diet, I cut out or minimised all inflammatory foods (processed food like refined sugar wheat flour and refined seed oils) - what a relief, I no longer suffer from rls and take no medication, just supplement a few essential vitamins and minerals.
Interesting to hear this. i have also experienced great relief by just adopting a diet. RLS used to be 7 nights a week and is now a couple of nights a month at low intensity. Some people don't think this is possible but it works for me and apparently for you. May it continue to give you sleep for many years to come.
You say "a diet" but you do not specify what you're avoiding or adding. Could you explain what you found that helped.
This might not be popular- and I agree with most everything that has been said here. It’s pretty frustrating when you list all the things you take or try and everyone in the comments jumps in and says,” Oh that makes RLS worse!” Just know that these people have all been where you are at some point. And everyone cares about you. Everyone is different. I didn’t want to use any of those big pharma drugs that supposedly treat it as I was afraid of making it worse( too many bad stories) so … I started with .1ounces of Maeng da green Kratom powder -it’s terribly bitter, however it’s got these compounds in it that act on the same receptors that opiates do. It’s in the coffee family.( not caffeine related, just genus)Very small amounts are therapeutic. Don’t use more than .1ounces at a time, it’ll upset your stomach - be careful with it. Dumb kids abuse it, which is why it’s not legal everywhere anymore. It changed my whole RLS. I mix the powder ( carefully measured on a scale that appears approximately a spoon full) in a water bottle and shake it up it doesn’t mix well so be patient, and use it right before bed- boom no RLS for me. Like everything you probably can build a tolerance- but I have used it for a few years now. So far so good.
I hope you get relief. Severe RLS is maddening.
Thanks so much for sharing your findings with me and for being so kind. ☺️
Sometimes even during the day if I think about RLS I start feeling the crawling in my legs.
PLEASE eat a big slice or medium slice of watermelon in the early evening. It has cittruline in it and lessens pain at night. It is a miracle fruit for RLS
You are so awesome! Thank you!!!!!!
That's a win-win. I love watermelon. Baby loves the seeds. 🦜 (Well, me too.)
me too, love it! Awww sweet Tara!
Try watermelon pickles someday. Sounds weird, but Yum!
What are they? Watermelon or pickles? 😆 I’m confused?
You can probably buy them at a farmer's market, but if you're adventurous, make 'em yourself.
Our ancestors didn't waste anything. They peeled the thin green part off the watermelon, scraped off the pink fruit, and diced the rind. Cooked the rind in a sugary, spicy brine. Yum yum yum.
Oh, seedless watermelons don't have much rind. If you want a lot, get the old-fashioned kind with seeds.
So interesting. Thanks!
So I’ve recently tried help oil and so far haven’t had trouble with RLS in two days. Things are looking up.
Did you mean hemp oil?
yes 😆 thank you!!!
The hemp oil: topically or ingesting?
ingesting
But topical would be good too.
Thanks.
As above, get some red vein kratom powder right away until you get your meds changed. It will stop the rls within minutes-you should never have a night like that again! Try to use it short term, if possible, so you don't get hooked.
Be sure to follow all the med swap advice and the ferritin/iron advice and you may not need anything down the road. If all of the changes fail, next try gabapentin and then, last resort, kratom or an opioid full time.
Thanks for the info! I appreciate it. I tried hemp oil and haven’t had problems for two days so far!
Fantastic! Yes, much better, when it works!
yup 😌
Do I have restless leg syndrome? 
Has anyone suffered from brain shakes.
Please help.. do I have RLS?
IS SLEEP DEPREVIATION DANGEROUS
Cramp from toes up to Hips & fingers up to shoulders
