RLS Symptoms

[williamghenry]

Good afternoon,My RLS Symptoms have got steadily worse since my operation My RLS was easing before my operation but since I have been in hospital and whilst recovering at home my symptoms have got severe stopping me sleeping and increasing my stress levels dramatically I don't know what to do My GP doesn't know about RLS He has put on Fast Track to see a Dermatologist Nothing has happened since July 2022 I am at my wit's end and I dread going to bed at night Thank you William Henry

[ChrisColumbus]

Hi WilliamG.

Firstly, I'm a bit confused by references to Epimax and a dermatologist. Do you have RLS:

'These five essential features must be present for a correct diagnosis of restless legs syndrome (RLS):

You have a strong urge to move your legs (sometimes arms and trunk), usually accompanied or caused by uncomfortable and unpleasant sensations in the legs.

Your symptoms begin or become worse when you are resting or inactive, such as when lying down or sitting.

Your symptoms get better when you move, such as when you walk or stretch, at least as long as the activity continues.

Your symptoms are worse in the evening or night than during the day, or only occur in the evening or nighttime hours.

Your symptoms are not solely accounted for by another condition such as leg cramps, positional discomfort, leg swelling or arthritis. RLS often causes difficulty in falling or staying asleep, one of the chief complaints of the disease. Many people who have RLS also have periodic limb movements (PLMs) - jerking of the arms or legs that is often associated with sleep disruption.'

Your first post also mentioned your op, which was in January I think, and Replies to that advised that various medications given during the op could have triggered RLS, but this would normally be temporary and you would get better.

But the only treatment that you mentioned other than the op was that your doc had given you Epimax cream, which is a moisturising/skin condition treatment for things like eczema, psoriasis, dry and itchy skin. Itchy skin, if that's what you're suffering, is not RLS.

If it is itchy skin and Epimax doesn't help, your doc should be able to prescribe stronger creams or ointments - perhaps containing clobetasol or steroid based (or you can buy less strong versions over the counter). I know that you're waiting on an appointment with a dermatologist, which would be appropriate for itchy skin but not RLS.

If it is RLS that you're sufferin hopefully the effects of your op will wear off. But are you on any other meds, either prescribed or OTC?

[ChrisColumbus in reply to ChrisColumbus]

If it is RLS, Sue's Reply below gives you a lot of info about iron and possible treatment drugs. Sue can also provide a lot of information on potential RLS triggers and things to avoid.

[williamghenry in reply to ChrisColumbus]

Thank you for your replyMy GP was the person that prescribed Epimax cream

My mother had RLS diagnosed at the local hospital by a Consultant who was familiar with RLS My mother died of Lymphomedia about six years ago My GP doesn't know RLS and he put me on Fast Track to visit the Nerology Dept This has been ongoing since July 2022 I haven't seen anyone yet My GP won't prescribe any further medication All the symptoms you described I have had for a long number of years I have only had a few hours sleep since being discharged from hospital app four weeks ago Thank you William Henry

[SueJohnson]

Since you don't list any RLS medicines nor iron in your profile, I will give you my standard response. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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). 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. 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 atHttps://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, estrogen, 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.

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.

[Joolsg]

Hi William,Your GP cannot ignore your RLS by saying he knows nothing about it.

It is his duty to research the disease.

I suggest you go back and ask for the full panel fasting blood tests, as Sue advises, check all your existing medications and consider safely switching you to safe alternatives.

Raising ferritin above 100, preferably 200 is the first step your GP should take. Then he should consider a switch from any exacerbating medications to safe alternatives. Sedating anti histamines, most anti depressants, statins, beta blockers and PPI gastric meds can trigger or worsen RLS.

In the meantime, while waiting for ferritin levels to rise, he can prescribe something to control the RLS. Perhaps short term diazepam or codeine.

Pregabalin and gabapentin are first line treatment and may even help your skin condition, because they help.nerve pain and nerve sensations.

Show your GP the Mayo Clinic Algorithm and ask him to use the RLS UK website.

[Merny5]

hi William,

I do not have an answer or any insight for you. I too am looking for answers to this exact situation. I had a shoulder replacement on December 13. Since then my RLS symptoms have been unbearable on most nights. It began the night of surgery. I was up ALL night walking the halls of the hospital. I informed my neurologist and she prescribed a full iron test. All results returned with in the normal range, for RLS. I really can’t imagine what happened to cause this set back. I really hope that you find an answer and can have some peace in your life.

[Crazy13]

I has severe RLS including “Creepy Crawlies” going up my legs. My Neurologist prescribed Gapapentin 300 pills twice a day. Problem over in 3 days. You must see a neorologist though. Local GP’s are not familiar with it in many cases.

[Crazy13]

call your local hospital and ask for the neurology dept. for an appointment ASAP