The Question Of Restless Leg Syndrome

Restless Leg Syndrome (RLS) has become an interesting discussion topic in Superficial Siderosis circles so my question: Is there a connection between SS and RLS? Or does the fact RLS affects 8% of the population¹ suggest it’s simple law-of-averages accounting for so many people now reporting problems?

What is RLS?

Restless legs syndrome (RLS) is a neurological disorder that can affect anyone. Research into Restless Leg Syndrome has increased over the last 20 years in relation to a higher percentage of the population now touched by this very painful syndrome. RLS most often causes uncontrollable movements of the lower legs and is often accompanied by painful or uncomfortable sensations. It occurs during times of rest with symptoms lessening while you are active.¹

While the research found RLS can run in families suggesting specific variations have a genetic component there is sometimes a connection to peripheral neuropathy. Symptoms involve both sensory and motor neurons. Physicians will often try medication treatments individually targeting each of these areas.

The Restless Leg Syndrome Connection

What is the connection between Restless Leg Syndrome and Superficial Siderosis patients? The evidence for those on chelation places the blame on serum iron deficiency (serum ferritin < 50 mcg). The hypothesis? Iron dysregulation in patients with RLS interferes with dopamine-producing cells. The research also supports many patients will experience reduced RLS symptoms with drugs that stimulate the dopamine system.²

The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency.- hopkinsmedicine.org

So, how are you expected to deal with RLS if you are purposely lowering your ferritin level via chelation? Maintaining a healthy body iron level while on Ferripriox is a tricky dance. Many who have chosen chelation are already riding the edge of being slightly anemic.

How does this help you?

The RLS Foundation (rls.org) offers a list of suggestions for coping with RLS:

1. Check for iron deficiency (ferritin level)
2. Eliminate over-the-counter medications that contain first-generation sedating antihistamines (diphenhydramine), and antidepressants that are known to worsen RLS symptoms.
3. Develop a daily schedule of exercise and/or physical activities that help you deal with RLS.
4. Engage in mentally stimulating activities to keep your mind occupied when RLS presents itself.
5. Consider eliminating caffeine, alcohol and nicotine.
6. Identify and eliminate activities that worsen your RLS

Check for iron deficiency (ferritin level) If you are suffering from RLS this information would seem to support a cycling Ferripriox dosing schedule. If increased iron loading during chelation off-days will help give you some relief when combined with your current RLS treatment you might want to explore this with your physician. Your doctor can review your records to help make a determination if low iron levels are the source of your RLS problem.

If you’re wondering if it is safe Gary has followed the five-day dosing cycle successfully for four years now. His ferritin level hit an all-time low of 8.1 one time but leveled out and now consistently stays in a channel between 8.4-13.5. His hemoglobin hovers right at 12.9 (13.5 is low end normal) so he does stay in the slightly anemic range but it is possible to maintain a balance while on chelation. Is RLS is a problem for Gary? It is not. I only added his blood work numbers to show a cycling dose schedule can work.

If you feel printed documentation would be helpful in making your case for changing to dosage cycling the study published by Dr. Levy, et al confirms the five-days-on/ two-days-off was followed by the participants successfully. If you suffer from RLS and already dose cycle then it might still help to discuss your iron levels and the possible connection with your doctor. With everything Superficial Siderosis patients are forced to accept hopefully living with Restless Leg Syndrome is something you will be able to fight.

¹ https://www.rls.org/understanding-rls

² https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/causes.html

Reference: Salas RE, Gamaldo CE, Allen RP. Update in restless legs syndrome. Current opinion in neurology. 2010;23(4):401-406. doi:10.1097/WCO.0b013e32833bcdd8.