RLS go away

[Hellouandme1996]

Just wondering if anyone else dreads this time night its just awful

[Somebody77]

Hey Nicky

Yup I was dreading nighttime. I’d get a sick feeling knowing I would be up pacing around for most of it. People that haven’t experienced it just don’t understand which is why this little community is wonderful.

I started gabapentin on Wednesday night and slept all night couldn’t believe it first time in years. I was up a bit last night but no way as bad as usual. And stretching and squatting my legs seemed to actually work at helping the RLS. Usually it does nothing

I see you’re in uk like me so it’s morning now. I hope you managed to get some rest.

Take care x

[Munroist]

Yes, I was up 5 or 6 times last night walking around. I try to take it one sleep at a time, not think about the rest of the night, just accept that I'm going to have to get up and stagger around for a bit. Last night I emptied the dishwasher, took some rubbish out to the recycling bin, did a sudoku, checked todays weather, and looked at some walking routes for an upcoming break. Normally after finding something useful to do I can get back to sleep but that's often no more than 60 minutes. After 4 or 5 am it starts to get better.

[SueJohnson]

If you are still taking clozapine, it is a dopamine antagonist that make RLS worse. A safe alternative is geodon. Discuss this with your doctor.

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.

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, eating late at night, 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, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, 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.

Are you taking any medicines for your RLS?

[Truthsword]

I know the dread that comes that time of night! Horrible!I'm currently having g television with a sleep specialist at the Mayo Clinic. I got my first iron infusion 2 weeks ago. And he put me on 50mg Tramadol and 300mg gabapentin. Works very well. I'm not awake all might with painful R L S anymore. It's a struggle still, but I am better. I have another infusion next Monday. I did have some side effects from the iron: burning and pain in joints, especially the joints that were replaced. Plus I had 99.8 fever with ibuprofen. But my Dr. Isn't concerned...not involving breathing or rash.

I'm so sorry...it is a terrible affliction!

[BarnGir1]

Nicky9999 - I was so depressed and exhausted and desperate about a month ago. Since then I have done many things that Sue and others have suggested here and can say that I have been sleeping 5-6 hours each night for about a week with very little RLS in the evenings. Trial and error but also with knowledge from others who have been there have helped so much. My antidepressant and statin meds were definitely causing problems and tweaking my diet (adding iron, reducing sugar) have helped as well. My recent blood work was all good and I am scheduled for a sleep study. Don't give in or give up. Keep reading and asking questions and checking this site. Good luck. BarnGir1

[maribarosay]

I used to. I take up to seven medications a night, two being over the counter, but my doctor has figured out a good combination. So I can sleep.

Tramadol 50

Temazepam 30

Neupro patch

Iron 325mg

Melatonin 2mg

IBU 800/ Tylenol extra strength

[SueJohnson in reply to maribarosay]

Are you aware that melatonin can make RLS worse for most? Also with the Neupro which is a dopamine agonist, be aware of the signs of augmentation which are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

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.

[maribarosay in reply to SueJohnson]

I take Fe 325 qhs. My fe is good now with labs. I inherited this menace. Neupro is one of meds that help. It has been increased since I started it, I’m at 6mg. The Melatonin doesn’t seem to bother me but seems to help my sleep.

[SueJohnson in reply to maribarosay]

6 mg of Neupro is twice the maximum dosage so you are probably suffering augmentation. Even though it works now, you have had to increase it to cover your symptoms which is one of the signs of augmentation as mentioned above.

Neupro which is basically ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is.

It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Ask your doctor for 1 mg patches. To come off Neupro cut one of the 1 mg patches in quarters and then reduce by 1/4 of the patch every 2 weeks or so. You may be able to reduce by a larger amount at the beginning. 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. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off the Neupro although it won't be fully effective until you are off it for several weeks. 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 1-2 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 divide the doses on pregabalin) Most of the side effects of gabapentin or 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 of pregabalin) daily." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). Do check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about augmentation 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.

I know you probably won't take this advice since it works for you now, but it is just a matter of time for when it won't work and you will want to take more and then it will be even harder to come off it. At least print this out and keep it for you will need it in the future.

[Fingerandus]

hi Nicky I DO ... i sometimes think my legs are a figment of my imagination that i wish them to start because thats what happens i have a beautiful bed with a most expensive mattress lovely white cotton sheets, duvet and cover ,three pillows. sit in bed to read and the legs start i very rarely spend a nite in my beautiful bed i dread the nite and im sick of RLs xx

[Dexterruf]

I don't have it badly. Yet. But I definitely sympathise.