rls extremes

[Slayedbroken]

big shout out to a certain lady laura for getting me here

Severe rls 3-4 times a day now

I struggle to have any relaxation or sleep without rls interruption although i even get it in my arms now

20 odd years of severe rls augmenting many medications tried nothing really has worked

The side effects of pramipexole for me personally are horrendous the personality change the compulsive ocd behaviours lost many good relationships over it

Unless im on the go 24/7 with my mind busy

But i just end up so exhausted

The gp has no or little interest in helping and i go in with more knowledge of my condition than they have trying to explain the violence of the spasms

My back and neck and leg muscles are virtually rigid the injuries from rls when you muscles are contracted but then explosively kick out hurt so much

I’ve tried just about everything from medicine to herbal to therapy to rieki holistic therapys

Screaming for true help

But i lost count of the times i want to take a long walk of a short pier

The deep depression episodes that come associated the nasty personality changes from the meds and tiredness the isolation it causes im 58 now but feel 88 rigid stiff and miserable

Where do you turn

[SueJohnson]

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

Since I don't know what you have tried I will give my generic advice:

Pramipexole 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. . To come off Pramipexole, reduce by half of a .088 mg tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. If that is too much to reduce by you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. 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. Some have used kratom or cannabis temporarily to help. 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 ropinirole 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). 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 atHttps://mayoclinicproceedings.org/a...

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. Improving your ferritin is one of the ways to help with your augmentation.

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, 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.

[DicCarlson]

Great advice from Sue - start at the beginning - off the DAs - slow and steady wins the race! Iron status is key! Hang tough!

[Baz33]

Ahhhh welcome on board,I'm Laura. I was in the midst of chaos the night I set up.an account so used my cats name , basil, baz ....hoping Salem.lake or sue Johnson get back to you soon x