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Ask Dr.Shakeel Ansari Your Own Question
Dr.Shakeel Ansari
Dr.Shakeel Ansari, Neurology Specialist
Category: Neurology
Satisfied Customers: 524
Experience:  Post Graduate Diploma Clinical Neurology
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Myself 53, my daughter 22 and my son 12 all have RLS. We all

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Myself 53, my daughter 22 and my son 12 all have RLS. We all started around 6 years old and it devastated my life and then although easier for my daughter, as we knew the cause, was also very distractive. It has been effecting my son's schooling for a few years, with extreme tiredness and sleep enertia, which makes him feel v Ill til about 11am. I know there's no medication for his age but there doesn't seem to be any support around helping us and his school find s way to function with this. We had some improvement with sleep enertia by adding light early, changing temperature and a small amount of caffeine drink but it doesn't help with tiredness. He falls asleep in class at 8:30! He misses out on so much, just like I did. 8mg/500 cocodamol helped when he was really distressed but that's not sustainable (first time I've tried it on him) I take dihydrocodeine at night same dose for 7yrs so I know RLS doesn't build tolerance to opioids like with pain. I'm lost, no-one seems to know how to support us.
JA: How long have you had the pain? What seems to make the pain better or worse?
Customer: Moving makes the pain better, We have had restless leg syndrome for years, from about age 6
JA: Is there anything else the Doctor should know before I connect you? Rest assured that they'll be able to help you.
Customer: No I don't think so

Hi, this is Dr Ansari, welcome to JA

Restless legs syndrome (RLS) is a chronic condition characterized by odd sensations in the body, most commonly in the legs and an irresistible urge to move them. More than half of the patients with RLS have a family history. Most of the RLS cases are women and most of the families show characteristics of an autosomal dominant pedigree.

The most important factors in pathophysiology include low serum iron and dopaminergic system disorder.

Please go for an iron workup with your doctor, ferritin levels below 50 mic-g /lit without anemia can get benefit from iron supplements.

Familial RLS can be grouped into two subgroups. In the sporadic group, only one person in the family is affected, while in the familial (idiopathic) group, more than one person in the family is affected.

Medications that may help and can be prescribed by a Neurologist after workup can be

  • -Pramipexole

  • -Gabapentine, Pregabalin

  • -A Warm bath with messaging

  • -Avoid, Alcohol, Caffeine, and tobacco.

I personally avoid Opioids. Narcotic medications

Customer: replied 14 days ago.
I understand but opioids seem the least damaging and don't lead to augmentation. I have tried all of the above and opioids are all that help me now but I only take 1 at 6pm and 1 at 11am, I would say it has saved my life. My daughter takes gabapentin and 1 dihydrocodeine and Iron. My son takes iron. My son is getting it so badly now, it's very distressing and he misses out on a lot due to tiredness. Thanks for your help but it looks like we are just having to wait for new developments in research. I know they are using the fact that people with RLS who use opioids don't develope tolerance as a research point but it's all a long way off! Thanks again, it was worth a try.

Have you used Clonazepam with Pramipexole? in various doses.

A Task Force was established by the International Restless Legs Syndrome Study Group (IRLSSG) to develop evidence-based and consensus-based recommendations for the long-term pharmacologic treatment of restless legs syndrome/Willis-Ekbom disease (RLS/WED).

The Task Force developed guidelines based on their review of 61 papers meeting inclusion criteria, and using a modified evidence-grading scheme.

  • Pregabalin has been established as effective for up to 1 year in treating RLS/WED (Level A evidence).

  • Pramipexole, ropinirole, and rotigotine have been established as effective for up to 6 months in treating RLS/WED (Level A).

  • The following drugs have been established as probably effective (Level B) in treating RLS/WED for durations ranging from 1 to 5 years:

  • gabapentin enacarbil, pramipexole, and ropinirole (1 year);

  • levodopa (2 years); and rotigotine (5 years).

  • Because of associated safety concerns, pergolide and cabergoline should not be used in the treatment of RLS/WED unless the benefits clearly outweigh the risks.

  • Other pharmacologic therapies have insufficient evidence to support their long-term use in treating RLS/WED. The IRLSSG Task Force also developed consensus-based strategies for the prevention and treatment of complications (such as augmentation, loss of efficacy, excessive daytime sleepiness, and impulse control disorders) that may develop with the long-term pharmacologic treatment of RLS/WED. 

I hope this effort can be discussed with your doctor for a better outcome.

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