RLS all frikkin night.: How am I, we... - Restless Legs Syn...

Restless Legs Syndrome

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RLS all frikkin night.

Theonlypetied profile image
64 Replies

How am I, we, you, supposed to do a decent day’s work when one has been up the whole night pacing to and fro to help ward off the ebbiejeebies? This is happening with increasing frequency. I tried standing, hand massage, hot bath, massage gun, stretching, walking in doors, watching TV, on my mobile, and nothing, NOTHING brought relief. I’m going off my pi**ing chump!😡🤬

64 Replies
Classof69 profile image
Classof69

Had episodes where I couldn’t lay down or sit or lean on anything for 5 days. Walked 24 hours a day for 5 days. Nothing I took worked. RLS never leaves my body, it is with me every minute a day. Have to mix up what I use, cut pills in half and distribute them like they were extended release. 3 pills turn into 6 every 4 hour instead of every 6.

Theonlypetied profile image
Theonlypetied in reply to Classof69

that’s awful my friend. You must be going nuts!

SalemLake profile image
SalemLake in reply to Classof69

69, do you have ALS?

TeddiJ profile image
TeddiJ in reply to Classof69

Order some red vein kratom powder so you can get some sleep and relief!

CookiePooki profile image
CookiePooki in reply to TeddiJ

In so sorry

Texas71 profile image
Texas71 in reply to TeddiJ

How is red vein kratum different from green? I have just ordered some green to try to help my RLS. I am not really savvy on kratum but was told it could help.

TeddiJ profile image
TeddiJ in reply to Texas71

Hi. One site put it like this: “Red is for bed, white for light, green for inbetween.”

Since most of us want to relax and sleep at our worst rls times, red works the best. I would say, add red borneo or another red to your order, if you can call them.

I have heard of one person using a green for rls, so it may work just fine for you!

Texas71 profile image
Texas71 in reply to TeddiJ

Teddij, thank you for the information, I was not sure what each color was best for, thank you! I do want it for sleep and RLS,

TeddiJ profile image
TeddiJ in reply to Texas71

You’re welcome! Let me know how it goes!

Theonlypetied profile image
Theonlypetied in reply to TeddiJ

does it come with instructions for use, times, quantities, consumption?

TeddiJ profile image
TeddiJ in reply to Theonlypetied

no, but I answered that in this thread.

(To Texas)

SueJohnson profile image
SueJohnson in reply to Classof69

When you see your doctor 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). 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). 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 as it will interfere with the absorption of the gabapentin. 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...

If you have tried gabapentin or pregabalin - tell me what your experience was.

SueJohnson profile image
SueJohnson in reply to Classof69

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. 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

jilk profile image
jilk in reply to SueJohnson

what a great list to take to a openminded trained kinesiologist thank you for continuing your knowledge and support

TeddiJ profile image
TeddiJ in reply to Classof69

Class: did you try Kratom or get relief from other posted possibilities? Fingers crossed.

SalemLake profile image
SalemLake

Are you still taking an antidepressant?

Madlegs1 profile image
Madlegs1

This sounds very like you are reacting to some trigger.

Do you keep an intake diary?

Many foods and drinks trigger RLS.

But the really extreme ones are, for me, msg, raising agents and sulphates in beer and processed meats ( pizza meats, chorizo etc.)

Also, be aware that some medications can set off the fizzies.

Hope you can find peace soon.

Theonlypetied profile image
Theonlypetied in reply to Madlegs1

thank you for responding. I have cut almost all my triggers out already. I didn’t eat or drink anything out of the ordinary yesterday. Just my luck perhaps?

Madlegs1 profile image
Madlegs1 in reply to Theonlypetied

Something is setting it off. I've just noted Sue's reply.

That is pertinent!

SueJohnson profile image
SueJohnson

Are you still taking prozac which can make RLS worse? Where are you on reducing pramipexole? Perhaps you are reducing too fast and you probably need a low dose opioid. Others have suggested Kratom.

Theonlypetied profile image
Theonlypetied in reply to SueJohnson

Thank you Sue. Actually, a Dr has just put me on Duloxetine instead of Fluoxetine to help with my Fibromyalgia pain and also my mood has plummeted recently. I wonder if it’s that change that’s setting me off? I’m on Codeine, Paracetamol and Naproxen for pain already. The Dr was hoping the Duloxetine might mean I could come off some of my other pain meds. I’m down to 2 tabs of Pram per day but have not gone any further yet as life has become so miserable, I couldn’t take any more DAWS. I will be speaking to him Monday so will ask about Kratom. Thank you.

SueJohnson profile image
SueJohnson in reply to Theonlypetied

Duloxetine is in the same category as Prozac so yes it could be causing your worsening symptoms.

ChrisColumbus profile image
ChrisColumbus in reply to Theonlypetied

While kratom may help - according to some reports - note that it cannot be sold legally for human consumption in the EU or the UK so I assume that your doc is unlikely to actually recommend it. The Duloxetine may well be your problem:

"RLS was noted as a possible side effect of the use of fluoxetine, paroxetine, citalopram, sertraline, escitalopram, venlafaxine, duloxetine, and mirtazapine"

e-lactancia.org/media/paper...

TeddiJ profile image
TeddiJ in reply to ChrisColumbus

He can buy it as tea on the site provided. Nobody should suffer that much! Of course, there are few to no doctors who would recommend kratom but that doesn't mean it isn't a miracle worker for those of us who use it.

ChrisColumbus profile image
ChrisColumbus in reply to TeddiJ

Sure - but if the recent sudden rise in RLS symptoms is because of the recent change of antidepressant prescription, addressing that first may be the more straightforward resolution. That still leaves kratom as a possibility - but without raising it with the doctor on Monday 😉

TeddiJ profile image
TeddiJ in reply to ChrisColumbus

Yes, for sure-getting rid of medication triggers is definitely key!

Texas71 profile image
Texas71 in reply to TeddiJ

How much kratum are you taking and is it the red, green or white? I am going to try green tonight, I heard today that red may help with RLS.

TeddiJ profile image
TeddiJ in reply to Texas71

The red will most certainly work, and within minutes. The green might work just fine, but I am not sure and it won't be as relaxing as a red.

Start with 1/2 a teaspoon-very little. See how you feel within the hour, then add another 1/2. Usually it is 1 to 2 teaspoons. You can also order capsules, which take longer to work but can stretch out your night and can also be carried in your pocket.

Texas71 profile image
Texas71 in reply to TeddiJ

Teddij thank you again, I am ordering red now and keep green for during the day. I will start out 1/2 tsp, see how I do, I just want a good night sleep.

TeddiJ profile image
TeddiJ in reply to Texas71

you’re welcome! I so get it!

TeddiJ profile image
TeddiJ in reply to Texas71

did you get it yet?!

Texas71 profile image
Texas71 in reply to TeddiJ

I did get green and red is on order. I have actually slept well the past couple of nights taking the green. I even laid in bed thinking about RLS and nothing. Usually when I start to go to sleep I think about it, hoping I get to sleep before it starts and bang, here it comes! It’s not every night that it bothers me but when it does I am so groggy, but can’t go to sleep because I have to keep moving my right leg and feet. Thanks for the information, I can’t wait to get the red and see how that works. At least I know the green will work at this time.

TeddiJ profile image
TeddiJ in reply to Texas71

You’re welcome and that’s great news! I know-isn’t it amazing?! But do please be careful, too. I take it every night but there are mixed reviews as to how it may affect us long term. Still-I wanted you to get at least SOME relief! Hope the red is even better!

TeddiJ profile image
TeddiJ

Hi. I feel you; I would never sleep if not for kratom. Order some red vein kratom from kraatje.eu (as tea) so you can sleep, work, and figure out a long term plan.

Theonlypetied profile image
Theonlypetied in reply to TeddiJ

looked at the Kratom web site. Shipping costs are ridiculous so won’t be going down that route at the moment.

TeddiJ profile image
TeddiJ in reply to Theonlypetied

So, you are going stark raving mad at night but you won't pay 18 eu for next day shipping to England, total relief, and a rested day for work?! We must have 2 totally different rls experiences and definitions of hell. I do wish you well and another speedy solution.

Theonlypetied profile image
Theonlypetied in reply to TeddiJ

good point, well made.☺️

TeddiJ profile image
TeddiJ in reply to Theonlypetied

lol! That's funny. I meant it to be a reality check and not as rude as it may have sounded! Just trying to help. I hope things are better for you.

Theonlypetied profile image
Theonlypetied in reply to TeddiJ

Guess what I ordered last night!

TeddiJ profile image
TeddiJ in reply to Theonlypetied

sorry-I didn't see this until now! wow-lol!

Theonlypetied profile image
Theonlypetied in reply to TeddiJ

Well I never! First evening had 2 cups of Kratom tea about 2hrs apart with mild RLS relief. Thought, sod it, had a heaped teaspoon tea before bed. SLEPT FOR 10 HOURS!!!!!!!! Only I wee break. Last night had heaped spoon tea at about 6pm. NO RLS ALL EVENING!!!!!!!!!! Had heaped spoon tea just before bed. SLEPT FOR 8 HOURS STRAIGHT!!!!!!!! I know it’s only early days, but bloody hell!!!!!!! Ordering some more today. Any tips on avoiding the ‘dust’?

TeddiJ profile image
TeddiJ in reply to Theonlypetied

OMG-that is awesome news! So glad you tried it and you got some much needed sleep!! WOOOOOT!

I know-that dust is everywhere. You get kind of used to it or you can try switching to capsules, if they have them. I use both.

Theonlypetied profile image
Theonlypetied in reply to TeddiJ

I thought of making up the tea and leaving it to stand for a hour, strain it through coffee filters and then heat up when required. Or just pour off the clear tea and leave the sludge behind.

TeddiJ profile image
TeddiJ in reply to Theonlypetied

Yes, experiment. See if they have capsules. I just keep it bedside w a cup, a teaspoon, and a bottle of water. If it’s middle of the night, I just gag it down quickly so I don’t have to get up. I usually add capsules.

So happy you got some good sleep! Yay! Still, be careful, as we don’t know liver effects or long term effects-mixed reviews. But also a miracle for us RLS-ers.

Beechie2014 profile image
Beechie2014

So sorry you are dealing with this. I cannot stress enough how helpful seeing a neurologist was for me. I couldn't sleep for years but now I'm almost symptom free. Clonazepam was a game changer for me. Hope you manage to find the right specialist to help you

Ducatidave profile image
Ducatidave

before you actually‘go of your chump’ try a hot bean bag out of the microwave. Get it as hot as you can and heat the areas. Dunno if you are keeping of SALT and not too much alcohol and coffee.

Theonlypetied profile image
Theonlypetied in reply to Ducatidave

I haven’t consciously reduced salt, although the amount of seeds, grains, pulses and raw nuts i’v swapped out for carbs will have removed salt and refined sugar. I don’t drink anymore and I only have decaf coffee. Thinking about going onto decaf tea may be.

Ducatidave profile image
Ducatidave in reply to Theonlypetied

please just try to go cold turkey on anything salt, processed foods etc for one week. I did and I could not believe how I felt … honestly life changing. Love to know how it goes.

TexasChristy profile image
TexasChristy

I’ve been there

I’m a nurse have been so tired after 13 hours on my feet all I could do was cry and pace around my house for hours . I use senimet cr if you haven’t tried it it’s worth a shot . I didn’t have any side effects from it . I’m sorry you are going thru this I hope you get relief soon .

SueJohnson profile image
SueJohnson in reply to TexasChristy

I'm glad sinemet works for you but it acts like a dopamine agonist which one should never start on because of the danger of augmentation.

Oregonmike profile image
Oregonmike

I know some here don’t like Kratom. But I’ve used small amounts ( 1/4 ounce- maengda powder-mixed/ shaken in 6 to 8 ounces water bottle ) this is enough for all night. Shake it up, take a swig- it tastes bitter , terrible. But what’s worse? Anyway- do this every few hours. If you consume too much of this it can make you sick. There’s an alkaloid in it that is much like an opioid- so don’t be dumb with it. I’ve used this technique for 3 years. RLS free now.

The other thing is make sure you aren’t unhealthy in other ways. Iron levels, addictions to alcohol, etc.

Remember, we all have our seasons in life that bring us great sorrow. This website has helped me not suffer without meaning. RLS is a real jerk, you know?

The Lord bless you, and lean on others more knowledgeable than me here. PS- Kratom may not be legal in your area- it can be abused( usually by dumb kids) because of this alkaloid. It’s related to the coffee plant, that’s the bitterness part.

Ducatidave profile image
Ducatidave in reply to Oregonmike

Hi Mike We all have some seasons that give us great joy. Regrards

eglimark profile image
eglimark in reply to Oregonmike

See my post, also kratom

Texas71 profile image
Texas71 in reply to Oregonmike

I ordered Kratom powder and put it in capsules for pick me up for a few days, don’t take it every day as I have heard it can e addictive. I held off one day and took about 2 gr of it around six pm. I am an early to bed, early to rise person so 8 pm is my usual bed time. RLS for many nights, not every night is a battle with leg exercises, stretches, movements. when I took Kratom at six and went to bed by 8 I thought about RLS, just to see if it started it up. Sometimes all I have to do is hope it doesn’t start up and well, that usually starts it. I laid there the first night of taking it and intentionlly thought about RLS and nothing. I have slept like a baby the past three nights. I highly recommend trying it in early evening, small doses and ramping it up just a bit, but not over 3 grams.

CookiePooki profile image
CookiePooki

I know. In the same condition. It is drastically affecting my life. The absolutely only cure is from God and I haven't been healed but I keep praying.

Ducatidave profile image
Ducatidave in reply to CookiePooki

please try to go 100% without salt for one week.

TeddiJ profile image
TeddiJ in reply to CookiePooki

Cookie-see my posts about kratom. Praying is not going to do the trick but it has led you to this site, perhaps?

eglimark profile image
eglimark

I don't have a traditional answer, but I left meds for a legal herb called Kratom years ago. Get mine from Goldenmonk, red vein Borneo is what I use. Make a tea of it with some herbal sleep remedies and put it at bedside.

Heavyd65 profile image
Heavyd65

first I would contact your doctor to get on some medication that works. I can’t tell you what will work for you…however I can tell you what has and does work for me…and I have been able to keep disease in check….having normal sleep and reasonably normal life. I take 6 capsules of Kratom at or before bedtime. This works in 20 minutes even if you RLS is in full blown mode. I also take a have dose of pamipre I’ll with it …the pamiprexel takes several hours to work and I believe that gives me some late night protection. I just started taking Gabapentin at bedtime. I’m hopeful this will work so i can stop the pamiprexil. I also have taken oxycodone 10 mg at bedtime which works incredibly well by itself….however since the opiate crisis in the U.S. doctors are very reluctant to prescribe it. I have a pain management doctor that will prescribe it when I can no longer tolerate my back pain with ibuprofen. If you have a caring and compassionate physician they will do what ever they feel is the best treatment for you. If your interested in Kratom it is sold in every corner smoke shop here. Many people use it for many different reasons. I use the Red Mengda Kratom …..which is said to help pain….it definitely works for my RLS. Good Luck……I understand your Hell…..I’ve been dealing with this for most of my adult life and have had to function in a high profile job with very little sleep for many years. Do what works for you. Don’t let anyone judge you for your choice of treamant. My pain doctor said she did not have a problem with me taking Kratom as long as it works and I don’t have any side effects from it. Good luck…God Bless and Happy Holidays to you!

SueJohnson profile image
SueJohnson

To come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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. Most of the side effects of gabapentin 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 daily." If you haven't had your ferritin checked, ask your doctor 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 and 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. 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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Kezza1975 profile image
Kezza1975

I really feel your pain. Withdrawing from Ropinirole and down to 0.5mg but the RLS is the worst it has been. It usually lasts the same length of time in that I can fall asleep around 1-3 and wake around 5-6. The severity is off the scale. My legs feel like they are on fire and I cannot keep still. Have a GP appointment on Monday to discuss but tried Pregablin and just weaned off Duloxetine (also a nightmare) I have Fibromyalgia but think I can cope with the pain and stiffness without drugs. The RLS just controls your life. I hope you find some peace from it.

TeddiJ profile image
TeddiJ in reply to Kezza1975

please read recent posts on this thread about Kratom, if you didn’t yet see them. Hate to read of your suffering. You CAN get some sleep and feel much better until you figure out your meds!

pennygates profile image
pennygates

You have all of my sympathy friend. I recognise all that you say. I gave other illnesses I can cope with these , but I can't cope with this dreadful condition. It's way worse than anything else (and that is saying something). When its really bad I eat walking or marching around the house. You can't watch TV, read a book when it's going full throttle or have a conversation. Sleep is is my idea of heaven But there is some very good information and advice given on this forum, and as we are all different, we may find something that may relieve it, and people have . Don't give up hope. I'm thinking of trying the Kratom tea that some people find works, but just for when it's at its worst.

Finally I wish you well, and good luck.

Jetto profile image
Jetto

Go to RLS.org and see a RLS doctor ASAP. For me the worse my RLS is the faster I must walk to get rid of it for a while. The point is when I get like this I work out hard enough that all symptoms are gone for a while, then immediately lie down and get some sleep while you are still breathing harder than normal. It can not return as long as you are breathing hard.

frequently I fall asleep before it gets me.

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