restless leg syndrome

[Ela46]

just wondering if there is anymore help out there

[SueJohnson]

What help do you need?

[SueJohnson]

OK I am guessing you feel you have RLS want help to solve your it. I'm also guessing you haven't seen a doctor. You do need to see a doctor. 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. Assuming you meet these criteria, 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 as that is when your ferritin is lowest. 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 are taking any medicines or OTC supplements, many of which make RLS worse, if you list them here I can tell you whether any of them make RLS worse and if so can perhaps provide a safe substitute.

[Ela46 in reply to SueJohnson]

hi I have been to doctors and I’m waiting to see a nuroglist I was diagnosed with restless leg syndrome when I was in my teens I’m 58 now and they are just getting worse I have been on pramprioxle up to 5 tablets a nite it was great at the start but it stopped working then I went on to ropineral and worked it up to 4 mg per night and when that stopped working I went back to pramixole but nothing was working and I just stopped taking them I know that was the wrong way to do it but as they weren’t working I just thought why take them and it was pure hell for a while so not the doctor has prescribed me the nuro patch and I started on 2mg and I have upped it to 4mg and to be honest it’s not working and I’m back to walking the floors Thankyou

[SueJohnson in reply to Ela46]

It's not surprising that it is not working as it is a dopamine agonist just like ropinirole and pramipexole. You are augmenting and need to come off it. You need to reduce by .25 mg every 2 weeks. You do this by cutting the patch. Depending on the size of the patch you have, you may need to ask your doctor for the 1 mg size to make this easier. Do NOT go cold turkey like you did before. 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, 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. Check out the Mayo Clinic Updated Algorithm on RLS link I gave you 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.

[Ela46 in reply to SueJohnson]

Aldo I have had my bloods checked and they said everything was ok except my thyroid needs checked and in a month and my folate was low and they prescribed me folic acid tablets one every day

[ChrisColumbus in reply to Ela46]

As Sue said in her first post, "ropinirole or pramipexole ....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." Read the rest of her post for more detail on this.

Sue also covers the necessity for a full iron panel blood test. Don't accept an answer that 'everything is normal'. They must give you the actual numbers that Sue specifies, as what is 'normal' for most people is not normal for RLS sufferers!

Most doctors and neurologists know little about RLS: you will get better advice and information here from people like Sue or Joolsg

It would also be useful to know which country and area you're in, as it may be that members here can suggest where you might better support from medics than you have been getting.

[SueJohnson in reply to Ela46]

As ChrisColumbus stated what is normal for most folks is not normal for those of us with RLS so you need to ask for what your ferritin and transferrin saturation (TSAT) were. They may not even have been tested as normal blood work does not test them.

[SueJohnson]

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 and yoga.

[mountainice]

I had RLS since a teen. . ( now 74) . It only when I started on levothyroxine in 2020. Just very occasionally get it now if tired or overdone it.

[Joolsg]

Sue and Chris have given you excellent advice. Your doctors clearly know zero about RLS or they would have recognised the severe worsening was caused by the drugs you were taking. The only solution is to get off them slowly as Sue advises and DO NOT take any more dopamine agonist drugs.

Withdrawal is hellish for most but once iff the Neuro patch your RLS will settle and replacement meds will help.

Where are you and which neurologist are you seeing? Sadly most neurologists also know very little about RLS so be very wary if they don't recommend getting off the Neupro patch.