restless leg syndrome -I'm a newbie here, but an oldie with rls

[Petre]

Some twenty or thirty years ago my GP sent me to a neurologist who prescribed Ropinerol .for the restless leg problem that was driving me crazy. Relief followed...for quite some time. Since then I've grown old, and the rls stronger. Apart from long warm showers, not a lot helps.Any suggestions very welcome.

[SueJohnson]

It's sounds like you are suffering from augmentation. The signs of augmentation 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. Do any of these fit your situation?

[Joolsg]

Very common for RLS to get worse on Ropinirole and Pramipexole.Read this article. It explains why.

sleepreviewmag.com/sleep-tr...

[Webbkaz]

hi like you I have suffered with severe rls for many years diagnosed in 2002 but have had it a lot longer, I too was put on Ropinerol which I still take to this day, I’m afraid to come off of it as I have heard some horror stories and afraid to go up on it due to augmentation. I have increased my iron intake to 600mg but not sure if that is what has helped slightly. I have noticed a change this last couple of weeks and for the better as I have been taking 1 paracetamol and 1 codeine 1/2 an hr before going to bed, I have always woken up around 4am every morning and would usually get up but I have dropped back off to sleep till around 7.30am, very unusually so I would say this has helped me, I also rub a cool damp flannel over my legs at night before getting into bed, good luck x

[SueJohnson in reply to Webbkaz]

If ropinirole works for you there is no reason to come off it. If you have been taking it for 11 years there is a good change you will never suffer augmentation. You mention taking 600 mg of iron. Anything over 85 mg of elemental iron is a waste and won't help. You don't mention having your ferritin tested have you? If you 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, fast after midnight and have your test in the morning. 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.

[SueJohnson in reply to Webbkaz]

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.

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.

[Jetto]

you may be having augmentation meaning you could try something else like horizant or Gabapentin or Lyrica if all else fails there is Methadone.

That’s what I had to go on. Nasty stuff. Fortunately RLS needs very low amount.

[Netball-50]

Hi I've had a nightmare getting a neurologist involved in my care too long a story to put on here I'm afraid constant battle!!. Now I have a neurologist that understands RLS at last !! U need to withdraw very slowly off your dopamine agonist I did this with pramipexole took a few months the augmentation was horrendous and withdrawal too. I am on pregabalin I have increased my dose 25 mg weekly till I found a dose that works I'm now on 400mg.

You need to ask your GP for pregabalin , gabapentin didn't work for me, please come off your DA the agony is worth it speak to your GP although I had a battle on my hands with mine and admittedly they told me they know nothing about RLS see if you can get referred to a neurologist that knows what there talking about good luck 🤞🤞

[NormAnnT2]

as others may have advised, after so many years on with payroll, you might be augmenting to that drug and simply changing to a different drug for management of your RLS could be extremely effective. It will require it again, that you withdraw from the Ropinirole, but you should do that under the guidance of a qualified clinician. Augmentation simply is a worsening of your response to the medication… Almost like developing an allergy to it and you’ll have to withdraw from it because it will only make your symptoms worse unfortunately but again, there are solutions to this, but you’ll have to have this problem identified by your doctor so if your symptoms seem worse and poorly managed by the drug now and occur earlier and more severely and even might now be affecting not just your legs, but your arms, for example,… That is probably augmentation?! If I am being redundant, I apologize… I could not bring up the other responses.

[Graham3196]

Hi

I have had RLS all my life (77 years) I recently developed a diet that has almost completely stopped the symptoms Its a bit boring but it might not be forever as I test new possible foods all the time. I have not woken up with RLS for the last two weeks and sometimes have no RLS for 28 days is a row, It will probably get worse with age but I'll be pretty happy if I buy another ten years as it is now.

No one knows if the diet will help until you are off the Ropinerol. There are lots of good posts here about escaping from Ropinerol but its worth starting the diet as soon as possible, today!

The diet consists of mostly rice and fish, chicken, no tea or coffee (in fact I drink nothing but water) Eliminate gluten, caffeine, lactose, alcohol, wheat, onion and garlic for a start. You can do that tomorrow. It might take up to 12 weeks for this to give you full relief but I had immediate reduction of symptoms when I just avoided gluten. I also follow the Monash University App on my phone and avoid foods that are high in FODMAPS. This is all explained in the Monash App, You should try hard to eat a gram of protein for every kilogram of body weight. This is not as easy as it sounds, I mix chick peas with my rice and eat lots of eggs and you can eat plenty of red meat if this is OK with you.

Immediately start worrying about your iron levels in your blood. Read all the posts on this forum. Ferritin level is considered the best way to show how your iron level is. According to some recognised experts who work in this field you want to get your ferritin level at least 300. Check with your GP to make sure you haven't any special problems so that iron is safe for you but dont accept any argument that there is something dangerous for a normal person to have an iron infusion, Some doctors hate iron infusions for unknown reasons so if your GP says no then find another GP. An iron infusion will help about 60% of people who try it and completely remove the symptoms from about 30 or 40 percent of those who try it.

If you want more information about the diet or other treatments that have been reported as successful feel free to send me a private message and I will send a detailed letter. I dont know much about the usual drugs because I have avoided them.

[SueJohnson]

To elaborate on what Graham3196 said: Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. 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, fast after midnight and have your test in the morning. 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 if needed helps with augmentation.