RLS since I was a teen

[Ozzette76]

Hi all I've had leg pain since I was a teenager and was diagnosed with rls in my 20s I struggle so bad after exercise and walking but have to try and deal with it.It doesn't help I've had spine surgery which causes more pain.

[SueJohnson]

I'm a little confused since walking helps to relieve RLS. Are you sure you have RLS?

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.

Do you meet these conditions?

[MattyRestless in reply to SueJohnson]

Hello Sue, I wasn't the person who posted this, and I agree that while walking will calm my RLS when the symptoms start, I also feel that my RLS is triggered by high activity and is worse on days when I'm doing a lot of activity. (which I think the original poster may have been saying?) I work as a Handyman and am quite active and I can tell on the days when I've worked really hard that my RLS symptoms are more severe. Yesterday was a rainy day so I hardly walked at all and my symptoms were noticeably more mild. I currently take Ropinirole as I have for over 30 years (58 yo now). I'm up to 6 mg per day and my symptoms start at around noon if I sit down for more than 10 minutes. I take 2 mg around 3pm so I can have a comfortable evening, (although 2 mg makes me sleepy) then take 3 mg about 8:30pm so I can go to bed at 10pm. I usually wake up around 2am and take another 1mg so I can sleep until 6 or 7am. I'm not noticing any really bad side effects (slight nausea rarely) other than I have had to increase the dose over the years. After reading about the side effects of all the other RLS medicines maybe I should just keep taking it, even though I feel like I may be having Augmentation... Thank you to everyone for being here!! It's comforting to be here and read about everyone's experiences. Prayers to all for relief of your suffering!!

[SueJohnson in reply to MattyRestless]

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

You are definitely suffering from augmentation. 4 mg is the maximum dose for ropinirole and you are taking 1 and a half times that and it is not fully controlling your symptoms.

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.

Unfortunately that means you need to come off it as it will only get worse.

First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.

Ropinirole (and pramipexole ) are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They 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. Pregabalin is more expensive than gabapentin in the US.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 as the peak plasma level is 2 hours. 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 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. 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.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 not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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...

What city and state do you live in? I may be able to give you the name of a doctor who is knowledgeable about RLS.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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 like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

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.

[MattyRestless in reply to SueJohnson]

Thank you Sue for all the great info. I live in Minnesota near Detroit Lakes and am about an hour from Fargo/Moorhead. My Ropinirole label says: Ropinirole HCL 1 MG tablet. I've never seen a specialist in RLS but I think it might be time for me to do that. If you know of any doctor in my area please let me know.

[SueJohnson in reply to MattyRestless]

You are in luck because the Mayo Clinic in Rochester Minnesota is a Quality Care Center for RLS and is one of only 10 such centers in the US and have excellent doctors.

Phone: [phone] Ask for an appointment with one of these doctors:

Michael H. Silber, MB, ChB (QCC Director), Suresh Kotagal, MD, Mithri Junna, MD

Melissa C. Lipford, MD, Erik K. St. Louis, MD, Maja Tippmann-Peikert, MD,

mayoclinic.org/departments-...

They do telemedicine so you may not have to drive there at all or maybe only once but it would be well worth it because they are the best.

[MattyRestless in reply to SueJohnson]

Excellent Thank you so much Sue!!

[MattyRestless in reply to MattyRestless]

I have contacted my GP to have him order the Full Iron Panel. When I get the results I'll contact the Mayo clinic. I have a cousin that lives in Rochester so I could stay with him if I need to go down there. It feels good to at least know what's going on even though I have a long road ahead... A long and restless road....There's a lot of twitching in my future. No matter what you have, You never have to look very far to find someone that has it worse than you. I'll try to grin and bear it : -) Nice to have a support system like this one!

[Bantamdyno in reply to MattyRestless]

Hi,working on my mk 1 fiesta brakes yesterday it was almost impossible to not bend my legs so I new i will suffer with rls but I didn't because I massage my legs with twin head massager ,have you found the trigger points🤔

Twin head use every night.

[Bantamdyno]

Have you found the trigger points🤔