New to group

[CookieandCJ]

Hi,

I’m new to this group and joined because I am at the end of my tether with RLS and hoped to learn from others with same condition.

Thank for letting me join

[Madlegs1]

You are very welcome.

What's your story?

Medication history, blood results and food diary?

Looking forward to hearing from you.

[SueJohnson]

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

I see ropinirole and rotigotine on your profile. From your saying you are at the end of your tether my guess is 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. Does this apply to you?

If so you need to come off it. 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. 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.

If it is the patch then get 1 mg patch and cut it in quarters and reduce by one quarter every 2 weeks.

You also list pregabalin on your profile. How much are you taking? It won't be fully effective until you are off the DA for several weeks and your symptoms have settled. After that increase by 25 mg every couple of days. Take it 1 to 2 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."

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 ask your doctor for a full iron panel. Stop taking any iron supplements 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...

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.

[Rangers52]

What have you tried so far? Welcome cookieandCJ you will get very helpful advice on here I would be lost without this page

[Jumpey]

🙏 Welcome. Hope Sue's post about augmentation helps you.

[puzzler1]

Hi Cookie.

Sorry to hear that you are having such a bad time. It seems from your bio that you have stopped taking dopamine agonists and might be going cold turkey. That's not a good idea and people on this forum with more knowledge than me will strongly suggest that you reduce the DA medication very slowly to prevent DAWS (dopamine agonist withdrawal symptoms) which can be serious.

Pregablin or gabapentin generally only helps when the DA has been stopped for a few weeks and in the meantime you'll be having a really really bad time.

What helped me as I was coming off pramipexole (a DA) was a low dose of Temgesic which is buprenorphine. It's more commonly prescribed now than it was when I started taking it. If your withdrawal is really bad you may want to go back on the DA and reduce more slowly as Sue suggests. Temgesic just about saved my life. Quite a few people on this forum are taking it.

Read my old posts if you want a bit of background or reply to this message.

If I've misunderstood your position please accept my apologies. Temgesic was a game changer for me although after a while I suffered with other opiate side effects and had to reduce the dosage. I still have big problems with RLS which are ongoing (RLS index 39-40) but mostly manageable - but that's another story.

What a sadistically diabolical disease RLS is!

All the best, Puzzler1

[CookieandCJ in reply to puzzler1]

Thank you all for your helpful, informative and comprehensive feedback. It is very much appreciated. Totally agree Puzzler. RLS is a cruel master.

My story…. 🤔

I had the odd episode in my 20s and 30s usually associated with cramped theatre or airline seats. Nothing dramatic and usually resolved at end of show/flight. In my 40s, had a prolonged period of RLS where symptoms were constant and was prescribed Ropinerole for a month. That really helped and after the course I went back to mitigations such as extra leg room, aisle seating, etc (to varying degrees of success!).

Everything changed 3 years ago when I collapsed with a saddle pulmonary embolism. From the minute I was hospitalised, my legs developed a life of their own (day and night). After 5 months of pleading with my very cautious GP for help, I booked a private neurology appointment I’m now under NHS care and the neurologist is super.

I started Ropinerole 0.25 and gradually increased to 2mgs per day. Great results initially then augmentation. Last year he added Pregabalin and I’m now taking 300mgs BD. Clonazepam 0.25 also if I needed it. Tbh, I hate the feeling of being drunk and try to use it sparingly.

This year, I was climbing the walls trying to work and sit still as well as not getting a minute’s peace to relax in the evening/night. I was exhausted and I’m sure these symptoms will be well recognised by this group. In April, to give a more balanced dose, I moved onto Rotigatine 2mg patches as well as the Pregabalin. I don’t know what my iron/Ferritin levels are Sue but following an iron panel, my results were apparently borderline so I started a 3 month course of Ferrous Fumarate. My neurologist referred me to his colleague and I saw her this week at a neurology movement clinic. She explained about Pregabalin and felt I should stop the DA . No tapering and said there would be short term worsening of symptoms but improvement medium to long term.

As an aside, I have severe OA in both knees I take Tramadol for pain relief (had bad experience with Codeine). RLS pulls my legs/joints in different directions so it’s not just the RLS I contend with. I have to manage the pain now too

Since I removed the patch on Wednesday it’s been like having RLS on speed! I’ve had to take more Tramadol and I used the Clonazepam (let me have 2 hours sleep).

I genuinely reached the end of my rope hence I was seeking for more info when I came across this group/forum I know I need to lose weight (for knees and RLS) but being awake 21/22 hours a day isn’t conducive to good food choices! I’m also restricted physically because of the knee pain

So sorry for the long reply. It’s a potted history!

Best wishes to all.

Christine

Ps One thing that sometimes helps my RLS and knee pain is my hot tub. Not this week it hasn’t! 🥲

[SueJohnson in reply to CookieandCJ]

Don't stop cold turkey - as you have discovered that makes you suffer more than is needed. The correct way is the way I mentioned above. I would advise you to go back on the 2 mg patch and reduce from there. Since you only have 2 mg patches you would have to cut them in eighths - cut them in fourths first and then cut each in half.

Doctors who aren't familiar with RLS simply take the advice on the leaflet for pregabalin which is really for pain and prescribe it twice a day. Unless you have symptoms all day long, take it only at night 1 to 2 hours before bed. 600 mg is the maximum pregabalin.

Since you had an iron panel ask your doctor what your ferritin and TSAT were. If she felt your iron results were borderline, then your ferritin was probably pretty low since she obviously doesn't know much about RLS and what is normal for others is not normal for those of us with RLS.

Take 2 tablets not one of ferrous fumarate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. You may need an iron infusion since it is so low and that would help with your withdrawal. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. And do call and get your ferritin number and post it here.