Restless Leg Syndrome

[Bingle17]

I'm close to suicide because I NEVER get any sleep at night!

[Joolsg]

Oh Bingle,I'm not surprised. This disease is torture.

But there is hope and effective treatment. I'll try to be brief to help.

1. First get full panel fasting bloods. Raising serum ferritin above 100, preferably 200 can reolve many cases.

2. Discuss ALL existing meds with doctors. Many meds trigger/worsen RLS & there are sometimes safe alternatives. Anti depressants, sedating anti histamines, statins and beta blockers and PPI gastric meds all make it worse.

3. If raising ferritin & replacement meds don't resolve RLS, meds like pregabalin or gabapentin can be prescribed at night unless contraindicated ( being overweight or obese or side effects unbearable).

4. If pregabalin gabapentin unsuitable, your doctors may prescribe a low dose opioid.

There is help available. Can you list ALL your meds, including OTC cough & cold meds and members can guide you?

As you have type2 diabetes, you may find that a keto diet helps both your RLS and your diabetes. Many on here have switched to paleo / keto/ low carb diets and their RLS has resolved.

But first, you need help to get you some sleep.

Medical cannabis is available in the UK and that can help reduce RLS symptoms until you get through stages 1-4 above. It's not on NHS so we have to pay. But it is very effective for short term relief.

[Bingle17 in reply to Joolsg]

Hey Joolsg, Thanks for asking after me.

I discovered that I'd missed out on my anxiety/depression prescription so I'm hoping taking it again will help my problem. Here's my prescription list:-

Good

[Joolsg in reply to Bingle17]

5 of your medications trigger or worsen RLS so I suggest you ask for a detailed med review with your GP.They may be able to give you a suitable alternative that doesn't worsen RLS.

You're on 2 anti histamines. Fexofenadine is non sedating so won't worsen RLS. Hydroxyzine is a sedating Anti histamine and will worsen RLS. Discuss whether you can manage on fexofenadine alone, but as you have COPD, your GP will need to consider any replacement carefully.

Your anti depressant, citalopram worsens RLS. There are one or two safe alternatives. Trazodone and wellbutrin are possibilities. However, you need to weigh up untreated RLS versus untreated depression. Often, when RLS is fully controlled, depression and anxiety are reduced. If you had depression before you had RLS, this may not be the case. If RLS caused the depression, then if you resolve the RLS, the depression will improve.

Metformin and avorstatin - many people find statins trigger/worsens RLS. You could consider an alternative statin or follow a low cholesterol diet to see if that helps.

You're also taking gastric PPI meds which are known to trigger RLS. Discuss whether other antacids will treat your condition. Gaviscon is safe. A good probiotic like Symprove may improve your gut health & reduce the acid. You should check whether you have H Pylori bacteria which can cause acid stomach and ulcers. It can be treated with antibiotics.

Zapain is codeine and paracetamol which can help mild RLS but the paracetamol will worsen your stomach issues. Plain codeine would be better.

I suggest you first get bloods taken and ensure your levels are above the recommended levels for RLS. You may find that raising ferritin by oral iron pills or an IV iron infusion will improve the RLS.

Replacing the sedating anti histamines and the anti depressant and the statin might also improve the RLS BUT your GP must ensure your depression is adequately covered.

If RLS is fully controlled, many people find they no longer need statins or high blood pressure meds because they are getting a full night's sleep.

Have you told your GP you are not sleeping? You must do so and discuss how to resolve it.

Drugs like pregabalin act as a sedative as well as controlling RLS and so may help your anxiety.

The Zapain is not covering the RLS. Please see your GP asap to discuss this fully and ask them to read the Mayo Clinic Algorithm which sets out best treatment for RLS. It's a US paper, written by the world's top experts. The UK is around 10 year's behind. Do not let them prescribe Ropinirole, Pramipexole or the Neupro patch ( Rotigitone) because they cause a severe increase in symptoms quite quickly ( augmentation).

Stay in touch if you're not coping and there will be people on here who can reassure you.

mayoclinicproceedings.org/a...

[ChrisColumbus]

I was about to reply, but Jools has done a much better job than I could.

You are not alone in your suffering or your feelings. Jools and many others on this forum have a wealth of experience & knowledge that they can share with you. Listen to them and if you take their advice this *will* get better.

[TeddiJ]

So sorry-we feel you! Order red vein kratom powder, in the form of tea, from kraatje.eu. It stops rls in minutes so you can get some sleep and figure out your plan.

[Jumpey]

I feel your pain. Jools has given great advice. There is hope.Hang on in there.

[Cowbsky]

Hi,

_ far from being cynic and arrogant, I would kind ask to look for an "holistic" approach for your RLS. I have been managed mine very well ( I am 70, with RLS since seven) since some 2017 with a kind of holistic approach (EFT + Energy Medicine+ 0.5 mg of Clonazepam _ these days I am testing 0.3 mg of Clonazepam + 25 mg of Lamictal). It is not a cure, rather just management, which sometimes bothered me a little, when I have to go for two complete cycles of Full receipt EFT and Energy Medicine exercises, before bed and at about 4 to 6;00 am;

_ my approach (and others you could find on EFT forums, websites: emofree and EFT Universe): first I ruled out a major drawback I did not realize I had in 2017, in addition (UARS : upper airway resistance syndrome); UARS sintoms can mask RLS ones. Second: about some 3 years ago I found out those Subtle Energy techniques, which I have been studying since then (and forever);

_ I tried hard medications like most in this Forum (poor results; never more);

_ Used to have a smart guy in this forum (Manerva, go away, now hidden) who try to implement holistic approach here, maybe his last post below. He did not suceed;

_ I know my approach might look weird, but it works for me. Lots of research was spended to get there; very happy with the results.

_ you might want to take a look on my repplies elsewhere , on my more elaborated on my approach.

all the best and good luck

____________________________________________________________________________

A holistic approach to RLS

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1 year ago•55 Repplies

[Joolsg]

Bingle are you alright? Please let us know you're safe.

[SueJohnson]

To elaborate on what Joolsg advised. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. As Joolsg said, when you see your doctor ask for a full iron panel. You should 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 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 or pregabalin as it will interfere with the absorption of them. 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...

[SueJohnson]

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, 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.

As Joolsg said 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.

[Bingle17 in reply to SueJohnson]

Thank you, Sue Johnson, for your reply.

My biggest problem at the moment is that, because I'm sleeping so badly, extreme insomnia, I have the high anxiety/stress level you advise are bad, so at the moment it's a vicious circle!

I've made a note of all the other things you say I should/should not do. Here's the list of prescribed medicines I take:-

Good

[SueJohnson in reply to Bingle17]

Joolsg did a good job in looking at your medicines and suggesting substitutes. Trazodone also treats anxiety. PPI medicines lower the absorption of iron but make RLS worse in only a few people. I don't know why she included metaformin with avorstatin as it is not a statin and does not make RLS worse. Nexlizet is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

[Paul007]

I felt the same then tried cannabis and now I'm actually looking forward to going to bed. I know it's illegal and comes with a certain stigma but it's changed my life

[Joolsg in reply to Paul007]

No longer illegal in the UK for medical reasons. RLS and lack of sleep will qualify.

[Paul007 in reply to Joolsg]

Do they take out the THC because that's what's helps

[Joolsg in reply to Paul007]

Medical cannabis has the THC in it. That's why it's only available privately & is quite expensive. They will prescribe oil with various levels of THC or flower you can vape. It was supposed to come down in price but it's been getting more expensive sadly.

[spencertroy222]

I know how you feel. Try 900mg of Gabapentin as soon as it comes on. Dont take Gabapentin when you are free of it. I found as soon as it come on 3 x 300mg of Gabapentin did it. Took 1/2 hour to 40mins everytime and I was free of it.

[spencertroy222]

Also try pramiprexole

[Joolsg in reply to spencertroy222]

No don't try Pramipexole. It's no longer first line treatment because of the high rate of worsening of RLS ( augmentation).This forum if full of people suffering terribly on dopaminergic drugs.

[spencertroy222 in reply to Joolsg]

Pramiprexole works for me as side effects of Gabapentin (memory) are catastrophic to me. No doubt Gabapentin works but here a d now memory is no existent. Remember things clear as day from decades ago though

[Joolsg in reply to spencertroy222]

Pramipexole works until it doesn't. Watch for when it stops working. If your RLS becomes more intense, starts earlier in the late afternoon, early evening and moves to arms or other body parts, then start reducing it. If you can't sit through a plane journey or the cinema, it's a sign you need to get off it.Gabapentin and pregabalin are now first line treatment unless contraindicated. Memory loss is an adverse side effect and low dose opioids might be better in your case.

Ensure your iron levels are above recommended levels as that can delay augmentation.

[spencertroy222 in reply to Joolsg]

I crushed my spine in 1989. I have been on daily doses of tramadol for years. Tramadol has no effect at all on rls. The pramiprexole has worked now for 3 years. If I do not take pramiprexole rls will a d has attacked me. Just missed one night a few times and rls was waiting for me.

[Joolsg in reply to spencertroy222]

You can't miss any doses of pramipexole or you suffer severe withdrawal RLS. Tramadol is the only opioid that also causes an increase in severity of RLS symptoms so also be wary of that.

[kygigi3]

I was suicidal more than once for 2 decades! I wanted to saw my legs off. In my late 30s the rls started going up into my arms. In my 40s it went all the way up to my shoulders. I just recently learned that when it moves up your body it’s called Augmentation. Nobody knows how horrible this disease is. I have been on every medication there is! Nothing worked until I decided to try Mirapex. It saved my life! If someone tried to take this medication from me I would shoot them! Having that kind of relief when I used to punch myself in my arms and legs to make pain hoping pain would take away the rls, is PRICELESS! I would definitely try it before taking opioids! It literally saved my life!

[SueJohnson in reply to kygigi3]

The augmentation isn't when it goes up your body, it is when you are taking a dopamine agonist like mirapex and 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. Up to 70% of people on mirapex will eventually suffer augmentation. I certainly hope you are one of the 30% but do be aware of the signs of augmentation because if you suffer from them you will have to come off it.

[CookiePooki]

I'm so sorry for you. I don't know if this would help but worth a try. Try hanging in an objective at a swimming pool and even falling asleep inside the objective tight enough that your legs can hang fully extended and you cannot call through and you can lay your head on the innertube.