Help!

[Beddancer]

Hi, I have rls and am trying to get help and advice, appreciate any help. Hope you are all well.

[SueJohnson]

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

Check out the pinned post on Completing Profiles.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask 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. 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 your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels you need it. 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. (Pregabalin is more expensive than gabapentin in the US.) 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 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, foods high in glutamate, 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 (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, 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.

[Beddancer in reply to SueJohnson]

Hiya, thankyou! I take verapamil fexofenadine gaviscon metoclopramide carbimazole apizaban vit d3 multivits canaglifloxin matazapine and duoresp inhailers. Allbt levels were a ok last checked end of summer. x

[Joolsg in reply to Beddancer]

Most of your medications are triggers for RLS. However, replacing them with RLS safe alternatives may be problematic.When did your RLS start? If you can tell us when it started it might help us pinpoint whether a particular med is the reason and whether it can be replaced with a safer alternative.

Resolving underlying health issues can settle RLS for many people. Similarly, getting a good night's sleep can resolve a lot of health issues like high blood pressure and type 2 diabetes.

[Beddancer in reply to Joolsg]

Hiya, the legs and body started late summer last year, before the anxiety meds but was allready on everything else for min of 6 months. Hope you are well. Best wishes

[Joolsg in reply to Beddancer]

When you do see your GP, refer them to RLS-UK website and ensure you get morning, fasting, full panel blood tests to include serum ferritin. Raising serum ferritin above 100, preferably 200 resolves the majority of RLS.The fact you suddenly developed RLS 6 months ago would indicate a trigger. Either low serum ferritin or one of the trigger meds.

As SueJohnson says, many of your meds trigger/worsen RLS. Safer anti anxiety meds are benzodiazepenes, like diazepam or clonazepam.

The calcium channel blockers prevent iron absorption, which is why they often worsen RLS.

Consider a good pro biotic like Symprove, which improves gut biome and helps prevent indigestion and acid reflux.

Do NOT agree to a dopamine agonist. UK GPs will simply look up RLS in their formulary and see that Ropinirole, Pramipexole or Rotigitone are meds recommended by NHS. However the UK is about a decade behind best treatment practice. These drugs cause serious common side effects, inc Impulse Control Disorder ( gambling, overeating,compulsive spending and hypersexuality) and they make the disease VERY severe within months or years. Experts no longer prescribe them.

First line treatment, after increasing serum ferritin and replacing trigger meds, is now pregabalin or gabapentin. If these are contra indicated ( they cause weight gain) then low dose, long half life opioids ( Buprenorphine or methadone) can be prescribed.

[Beddancer in reply to Joolsg]

Hiya, i cant drive on opiods and not allowed long term as addictive gp says no. I am very sensitive to meds so not allowed any others i have been told due to reaction rate and mixing them. Is it true magnesium cream works as not sure if that is the right one i read on a post here? Best wishes

[Joolsg in reply to Beddancer]

Opioids are not addictive long term for RLS. There is an excellent research study currently taking place at Massachussetts Opioid Registry under Dr Winkelman, a top World RLS expert. Opioids for RLS are low dose & do not cause addiction unless there's a history of med abuse.Most RLS patients are dependent on their meds and we need to take them for life.

Opioids can cause daytime drowsiness, but so can pregabalin, the main treatment option.

I suggest you do your best to control the RLS with a healthy diet, gentle exercise, raising serum ferritin with iron supplements or iron infusions and replacing the trigger meds with safe alternatives after discussion with your GP.

Magnesium at night helps many people, but not all.

[Beddancer in reply to Joolsg]

Thankyou. In the they wont perscribe opiods for me. Is it magnesium cream and which is the safest place to get please?

[SueJohnson in reply to Beddancer]

Magnesium glycinate tablets at night as what Joolsg is referring to. Can get from any pharmacy. Start out with the smallest dose. Magnesium cream can also be used but not when you are taking the tablets. I would start with the tablets.

[Beddancer in reply to SueJohnson]

Hiya I have digestive disorder so tried pills but bad stomach with them. Any ideas as to the creams?

[SueJohnson in reply to Beddancer]

Not really - sorry.

[Beddancer in reply to SueJohnson]

Thankyou for advice x

[SueJohnson in reply to Beddancer]

Mirtazapine, an antidepressant makes RLS worse for most people. The only safe antidepressant available in the UK is trazodone which also helps with anxiety and insomnia.

Canagliflozin is OK but be aware that it can increase the risk of leg and foot amputations.

Duoresp, Carbimazole and fexofenadine are OK.

I can't find anything that says apixaban makes RLS worse but one person on the forum said it did.

Metoclopramide makes RLS worse. The gaviscon you are taking should control your nausea and it is safe for RLS

Verapamil is a calcium channel blocker that makes RLS worse. If you are taking it for high blood pressure, some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. And then there are the ace inhibitors such as Zestril (Lisinopril, Qbrelis, Prinivil) and Perindopril (Coversyl). Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which can actually help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

Discuss all of the above with your doctor.

[Beddancer in reply to SueJohnson]

Thankyou, trying to see my gp but they are busy.

[SueJohnson in reply to Beddancer]

When you say "Allbt levels were a ok " were you referring to blood levels? If so the normal blood test may test iron, but not ferritin. And if they did, the doctor will tell you it your ferritin is fine when what is fine for others is not fine for those of us with RLS. Ask your doctor if you were tested for ferritin and if so what the actual number is and post back here.

[SEBARTA]

I take 50 mgs of pycnoginol 2 to 3 times daily depending the severity. I have it in both arms and legs although the arms are worse now. I also take an excellent fish oil supplement, 4 mgs of astaxanthin and a multi vitamin with a pretty strong B complex component .I take the multi or b complex with dinner the pycnogenol. (50 mgs of pycnoginol at lunch and either 50 or 100 mgs at dinner depending on whether the RLS is on the upswing or he downswing. Most nights I only have between 15 minutes to about half an hour of symptoms and simple message for a few minutes of the offending locations enables me to go right back to sleep. Worse case is I get up around 2 take hot shower and cool down for a few minutes prior to towelling off and returning to bed. This turn off the RLS completely and once you accept the concept and understand that you CAN get back to sleep after you will learn to accept this procedure a couple of nights per month. Most nights with this regimen I sleep 7 to 8 hours with a minor Interruption for about 5 minutes of massage after which I go right back to sleep. I have also increased the magnesium rich foods in my diet and occasionally take 130 mgs of magnesium glycenate These supplements have been a Godsend for me after 30 years of suffering with RLS. It is now manageable for me.

[Budreaux]

I recently discovered that drinking enough water throughout the day has had a huge influence in reducing my RLS symptoms.

20 years ago I started with clonazepam, then added pramipexole. Got off the clonazepam, am currently trying to get off the pramipexole by switching to gabapentin. Last year I figured out that the adderall I was taking for ADHD was 24-hour, which didn't help, so I switched to a shorter-acting version.

The gabapentin worked sometimes, and sometimes not at all, even when I took extra (which I don't recommend doing without doc's involvement).

Two months ago I was struggling to get to sleep, staying up and reading, eating junk, while waiting for the RLS to simmer down. My wife reminded me that a friend had found it helpful to drink water in the evening. I had tried that previously, with no success. But this time, I drank water throughout the day. When I drink 56 to 64 ounces or more, it pretty well guarantees that my meds will do the trick and allow me to sleep. I've slept well enough in the past weeks to begin returning to the person I had all but forgotten, the version of myself with enough rest.

I'll give myself another month of good rest before starting to back off the pramipexole.

[Beddancer in reply to Budreaux]

Thankyou, I drink water all the time, still waiting to go on the adhd diagnosis waiting list its 4 years long. I cant take any other meds that you but will keep trying with the gp! Best wishes.