I'm a 46 year old woman. I have suffered from RSL since childhood - intermittently. I remember it got a lot worse in pregnancy.
Lately, I have been suffering from terrible insomnia, and RLS. Not sure which one is causing the other or if they are independent.
To my horror, the RLS is now in my arm during the day too.
A hot shower seems to help, but I can't keep doing that all day and night.
The GP is totally unhelpful. What should I be asking for?
Welcome to the forum. You will find lots of help, support and understanding here.
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 including in a multivitamin 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), Neupro patch (Rotigotine) 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) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 nor calcium-rich foods 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 up-to-date on it at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
I am so sorry your GP was unhelpful. That because he hasn't been taught anything about the disease at medical school or during GP training. It's a national scandal & RLS-UK have been campaigning for years to get it sorted.Your GP cannot ignore you. RLS is a serious disease and can cause comorbidities ( Heart disease, high blood pressure, diabetes, depression) through severe sleep deprivation.
The correct treatment is set out in the Mayo Clinic Algorithm but as he sounds difficult, he'll probably refuse to follow 'US' guidelines.
However NICE has set out cks guidance on RLS which GPs should bother to read.
First line treatment is raising serum ferritin above 100ųg, preferably 200ųg. RLS patients need much higher serum ferritin to push iron into the brain.
GP should also review and safely replace all trigger meds.
RLS-UK has printable pages under 'Useful resources' on iron therapy so show your GP.
The trigger meds are under 'Treatments' section..Scroll down to 'medications to avoid'. Anti depressants, sedating anti histamines ( and cough and cold meds), diuretics, statins, beta blockers and PPIs all trigger/worsen RLS.
Read ALL you can. Start with RLS-UK website and Mayo Clinic Algorithm.As you have discovered, your GP knows nothing and dismisses it as a serious disease. Knowledge is power.
If raising serum ferritin via pills every other day/iron infusions and replacing trigger meds doesn't help, you can start gabapentin or pregabalin at night only.
Do NOT let the GP prescribe Ropinirole, Pramipexole or Neupro patch. They all worsen the disease itself, sometimes permanently. Experts have stopped prescribing these medications but the NHS is at least a decade behind best practice.
Here are links to RLS-UK website and the NICE cks guidance.
Because you experienced it during pregnancy, then iron deficiency is a likely culprit..
Get you serum ferritin number-- it should be at least a 100- and preferably 200 .
If it is lower than 100 then look at supplements -- ferrous bisglycinate every second night with vit c.
Or possibly an iron infusion.
Generally 50%of people get benefit from this.
Good luck.
DESPERATE FOR HELP
Desperate 
Desperate
Desperate for some relief 
