Had enough

[Labradormummy]

At my wits end now. It used to be at night but it's all day every day. I'm on the mac dose now of the Neupro patch. I've tried oils, creams, vitamins. Only thing that seems to help is a electric massage wrap.

[DesertOasis]

No, you’re too young, something else is going on with you I feel. Are you taking an SSRI, birth control, melatonin, antipsychotic, PPI? Are you anemic? Do you have chronic kidney disease?

When did you go on Neupro patch? Who prescribed it? What other drugs were you on when started?

[Labradormummy in reply to DesertOasis]

I've always had it in and off. But a few years back it got more frequent. I take an antidepressant. All my levels are normal especially my iron. Two years ago now. It was prescribed by a neurologist. Just the antidepressant. Only got two hours sleep so far 😪

[DesertOasis in reply to Labradormummy]

It got more frequent I’m guessing when you started the Anti-d. What kind are you taking? Anyone who is predisposed to RLS will be driven stark raving mad while on an SSRI.

[Labradormummy]

It started ten years after starting them. Unfortunately I can't cope without them. They're called serialise. I take 200mg

[DesertOasis in reply to Labradormummy]

When we’re young we can handle a lot of RLS triggers that we can’t handle as we age. There are RLS friendly Anti-ds, including Trazodone and Wellbutrin. I am all but certain that the Sertraline is making your symptoms of RLS much worse than they have to be. AND, the Neupro patch it sounds like has caused you to augment. Sue and Jools should be along shortly to explain to you how to slowly reduce the Neupro and go on to another RLS med that won’t down-regulate your dopamine receptors the way Neupro did. I know once you’re off the Neupro and also onto an RLS friendly anti-d you will feel profoundly better. That’s your only path forward at this point.

[Labradormummy]

Thank your help

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here. DesertOasis is right in saying that Sertraline makes RLS worse for most and the only anti-depressants that are safe for RLS are Trazodone and Wellbutrin.

You are on twice the max dose of Neupro for RLS and as you are suffering from augmentation need to come off it. Neupro which is basically Ropinirole 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 Neupro ask for a 1 mg patch and cut it in quarters . Reduce by one quarter which will be 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. 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 Neupro 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 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)." 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). Since it is going to take a long time before you are off Neupro, print out these instructions so you will have them then.

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 at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate 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.

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, eating late at night, 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.

[rescuema]

look into SAM-e for methylation and depression support. It may take a while to notice benefits but it’ll help gradually- only take it in the AM. Also try good raw cold pressed cod liver oil along with copper to repair ceruloplasmin activity.

[Labradormummy]

I saw a doctor today who is weaning me of the patches and I'm to start gabapentin. I have bloods done annually and they're anyways normal. I have a electric massager that wraps around my leg.n that's the only thing that reliefs it. I've had two hours sleep since yes5erday morning think I'm over tired now

[DesertOasis in reply to Labradormummy]

I agree with Jools, you should take oral iron, preferrably ferrous bisglycinate, on an empty stomach, about an hour before bed. And it’s worth trying tonight. I take 50mg of ferrous bisglycinate this way and I get complete relief from RLS in one hour for one night. Oral iron taken this way is to RLS what aspirin is to a headache. And just as aspirin doesn’t always work, as in the case of migraines, the oral iron is not guaranteed to provide complete relief if your receptors are badly down-regulated. Trying it one night is practically a must.

Here are others for whom this has worked. Please see the third reply to the post:

healthunlocked.com/rlsuk/po...

[SueJohnson in reply to Labradormummy]

Doctors will say your ferritin is OK, but what is OK for others is not normal for those of us with RLS. Ask what your ferritin is.

[Joolsg]

As Desert Oasis says, the sertraline anti depressant is probably responsible for triggering your RLS.It's unusual in the UK for doctors to start patients on the Neupro patch. Were you on Ropinirole or Pramipexole before?

What you're experiencing is drug induced worsening of your RLS, caused by dopamine agonists.

The only solution is to get off them completely.

Neupro patch comes in 1mg patches. The max dose is 3mg. Whoever put you on 6mg is not only negligent, but clearly doesn't understand augmentation. You may have a legal case against the prescriber. There have been several successful UK legal cases. Have you experienced any gambling, over spending, over eating or other compulsive behaviour?

Ask for 1mg patches, cut them in quarters. Reduce by 0.25mg every 2 weeks. RLS will worsen with each reduction, so ask for a low dose opioid to settle the withdrawals.

Ensure your serum ferritin is above 100, preferably 200. Get full panel, morning, fasting blood tests. Raise levels by taking ferrous bisglycinate once a day at night just before bed with Vit C.

Review your anti depressant. As Sertraline triggers/worsens RLS, you will need to think about coming off it. Leave that until you're off the Neupro patch as 2 brutal withdrawals at the same time is not good.

Trazodone is an RLS safe anti depressant.

Read all you can on the RLS UK website. The more you learn, the better your outcome. Even UK neurologists aren't taught the up to date research on RLS.

[Labradormummy]

I had ropinirole but they kept having to up the dose. Then the same with the patch. Gambling had come a bit of a problem which is weird because before I'd never even brought a lottery ticket. I have CoCodamol of that helps? I had to ask for that. I asked them to half the dose of the antidepressants today.

I'll google that antidepressant as I've not heard of it.

I think sometimes doctors just think on her legs ache here take this

[SueJohnson in reply to Labradormummy]

Gambling unfortunately can be a side effect. Be aware that it is the drug doing this so you resist. It has ruined some people on this forum.

[Labradormummy in reply to SueJohnson]

Thank you