A Life of Restless Legs Syndrome

By NZ Kiwi

1 min read

Restless from an early age

My mother (RIP) told me she first noticed I had RLS at 4 yrs old after being sent home from kindergarten. The school said, "your son is too restless & disruptive." I am now 74. I have lived with RLS every day. If my activities were mind-stimulating, I would function just fine until my mind wandered and I became so distracted & dysfunctional that I was often removed from class. I was very good at industrial arts & became a qualified toolmaker by 20 yrs old.

Searching for answers

There was no RLS back then just a bad sensation in your legs, arms, chest, yes my whole body. After immigration to the USA, I sought some answers by finding a specialist in the field of RLS. After several meds, we found one that worked 95% of the time and I have been on it now for nearly 30 yrs.

RLS is always with me

Here's what I have found, it's hereditary. My whole family & children suffer from RLS. It's with me all day but worse in the evening when I try to relax. It follows me around like a bad dream with several specialists giving up saying there's nothing that I can do. I have found an adrenaline rush will stop it instantly. Keeping my mind active keeps my RLS at bay. My art & machine shop help me from insanity but my restless nights take a toll on my near-perfect marriage now heading towards 30 years.

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Lori.Foster Community Admin
My heart goes out to you, <inline-mention username="NZ Kiwi" user-id="4537202"/>. You have had quite a journey. I am glad you found ways to cope with your RLS symptoms, especially at such a young age and with no medical support, but I wish others in your family didn't have to deal with it as well. I hope better treatment becomes available as they age. I wish you had more support from your spouse. RLS can be hard on everyone in a relationship, but you certainly didn't choose to have it. I hope you were able to work out this issues in your marriage. Please know we are here for you whenever you need us. Best of all wishes. - Lori (Team Member)
NZ Kiwi Member
Ray, thanks for reading my comments on RLS. Nobody can understand the feeling generated by RLS until it one experiences it. I guess I have just gotten so used to it it's part of my day to day life.
1. Ray Li Member
 <inline-mention username="NZ Kiwi" user-id="4537202"/> I know what you mean, I have gotten used to the fact that I have had a never-ending headache since 2009. My pain levels have ended up having to adapt as a result. I think it is kind of interesting/fascinating what our bodies will do in order to survive. I hope you are managing ok. 🥄🦄 Ray (Team member)
Ray Li Member
<inline-mention username="NZ Kiwi" user-id="4537202"/> Thank you for sharing your story with us, sorry I am late in responding. I, too, was a child when RLS hit but I'm only 34 so I can't imagine what it must be like to have lived with RLS as long as you have. I am glad to hear that a doctor was finally able to help you and that the medication you are on works 95% of the time. At the same time, I am sorry it doesn't work more. It's crushing when specialists give up on you because they feel so frustrated and defeated. I wish you didn't have to experience that let alone more than once. I am also so sorry to hear that your RLS is starting to take a toll on your marriage. Have you tried some of the natural treatment options for RLS? I apologize if you have already. 🥄🦄 Ray (Team member)