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LDN Turns Around the Life of a Sufferer of Restless Legs Syndrome

Suzanne Greenwald
October 26, 2016

About Restless Legs Syndrome (RLS):

Restless legs syndrome (RLS) is a nervous system disorder that causes an urge to move the legs (and sometimes other body parts). Unpleasant sensations (cramping, itching, creeping, throbbing, etc.) tend to cause the need to move, in order to relieve the feeling. The symptoms are often worse at night, and can cause mild to severe disruption of sleep (which is why it is classified as a sleep disorder).

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How long have you had restless legs syndrome (RLS) and what was the condition like for you?

I had restless legs syndrome probably about 2 years before it was diagnosed, and before I got relief. My experience of RLS was that, after I had been in bed probably about twenty minutes, one leg began to cramp up. I would move it around, try to go into different positions, and it didn’t help. I would get up and walk around, and that would relieve the pain. It’s not like I needed to move, it’s just that moving, walking, is the only way I could get relief. At first, I had it just periodically. Not every night. Then it started getting more and more frequent, until I was having it every night. It was keeping me up, keeping my husband up. I didn’t know what it was. I had it every night, and that went on for a very long time.

How did having RLS impact your life?

The impact on my life was that I was tired all day. I kept my husband up at night. I just didn’t get enough sleep. And it was painful too. So it was very impactful on my life. I mean first of all, I couldn’t sleep, and because I couldn’t sleep, I was groggy all day. I would take naps during the day, and the thing is that it [RLS] didn’t bother me during the day…I could sleep during the day, but I couldn’t do anything else! And besides me, there was my husband, who didn’t sleep at night either, so it impacted both our lives. So I was pretty much at my wits end. I didn’t know what to do.

How did you discover that what you were experiencing was RLS?

I had taken my aunt to Dr. Leonard Weinstock (a gastroenterologist) for a colonoscopy, and I was sitting there in the waiting room with nothing to do, waiting for her. There was a poster which listed the symptoms of RLS and asking people to come in and work with Dr. Weinstock on his (I guess he called it) “experimental treatment.” I didn’t know what I had was RLS, but I certainly was. I matched my symptoms with the symptoms on the poster and I figured that I had it. So that prompted me to make an appointment with Dr. Weinstock.

How was your RLS treated with LDN?

After Dr. Weinstock confirmed that I did have RLS, the way he treated it was to first test me to see if I had small intestinal bacterial overgrowth (SIBO). He did this because his theory is there is a connection between RLS and SIBO. The way SIBO is diagnosed is through a breath test. So I did that, the breath test, and indeed I did have that problem (SIBO). Therefore Dr. Weinstock gave me Xifaxan®, an antibiotic. One course of Xifaxan® didn’t help at all. So then I took a second course, and then it did help me. After the second course, I had no more symptoms of restless legs syndrome. Then Dr. Weinstock prescribed low dose naltrexone, to help keep me in remission from the RLS. I’ve been taking it ever since.

What is your life like now?

I don’t have restless legs syndrome any more. When I take the low dose naltrexone consistently, I do not have any symptoms of restless legs syndrome. No leg cramps. No need to get up and walk around during the middle of the night. When I am remiss, if it’s just for a couple of days, it’s no problem. But I was on vacation for about a month and I didn’t take it, and I started getting leg cramps again. So from that point I knew that I have to be consistent. But when I take it every day, I don’t have the leg cramps at all. So it’s been perfect for me.

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What have been the biggest changes in your quality of life following this treatment?

The impact of this treatment on my life has been very significant. I do not have leg cramps. I do not have to get up in the middle of the night. I do not disturb my husband’s sleep. I am energetic during the day because I’ve had a full night’s sleep. It has changed my life! I am very happy with this experience.

How does your husband feel about LDN?

My husband is very grateful for this treatment. He gets a good night’s sleep. He wanted to come down to the office and kiss Dr. Weinstock!

Have you experienced any side effects from LDN?

I have had no side effects from low dose naltrexone.

What would you like other patients with RLS to know?

I’d like other patients with RLS to know that there is a treatment. They do not have to continue suffering and searching for treatments. There is a treatment that can work.

More about Suzanne:

I'm 77 years old, live with my second husband of six years in a quiet suburb of St. Louis, Missouri. I have three children and six grandchildren. I continue to work part-time as a psychotherapist. We travel a lot and life is full.