When I had settled down with Peritoneal Dialysis towards the end of 1999, I was thrilled that my life had finally returned to normal. I had started working. I was also playing Table Tennis. I couldn't complain about how life had turned out, given the circumstances.
One new problem surfaced, though. My legs started behaving weirdly. I noticed that I would have this irresistible urge to shake my legs when I was sitting for a while and even at night, while I was trying to sleep. In a few weeks, the problem became so bad that I started dreading car journeys. I would need to stop every half an hour and get out of the car and just shake my legs.
I spoke to my nephrologist about it. He did not know what it was and did not have a solution.
I continued to suffer. Well, it was not something that seemed life-threatening. I couldn't describe it as a major problem as well. It was just something that was at the back of my mind always.
I heard about an email support group for Dialysis patients hosted by Dale Ester. I joined it, hoping to learn about PD and meet fellow patients from around the world. Those were the days when there was no Facebook or WhatsApp (where all the support groups are hosted, these days). Email support groups were the only option for online support.
When I joined the group by emailing the designated address, I got a few welcome and introductory emails which were like FAQs, rules to post and so on. My eye caught the title of one email. "Restless Legs Syndrome in Dialysis Patients". I went to that email first.
I couldn't believe what I was reading. The problem which I was grappling with all these months had a name (Restless Legs Syndrome, RLS) and many dialysis patients were suffering from it. The best part of the email was that there was a drug called Gabapentin that was very effective in treating RLS. The email noted that many dialysis patients were suffering from RLS and very few nephrologists knew the solution. They recommended that patients having this problem print that email out and take it and show it to their nephrologists.
I did just that. My nephrologist wrote out a prescription for the drug, Gabapentin, which I started. Within a week, the restlessness in my legs disappeared!
My biggest problem with my life on dialysis vanished in a week with the new drug. All thanks to the wonderful Dale Ester and his email group called Dialysis Support.
About 10-30% of dialysis patients suffer from this syndrome. About 3-15% of people not on dialysis also have it. If you have the symptoms described above, please talk to your nephrologist about it. There is a simple solution for it. There is no need to suffer unnecessarily.
Some people are wary of taking additional drugs. They worry about the side-effects. For any drug, we must always weigh the benefits against the risks and decide whether or not to take the drug. I have found RLS to be a horrible thing to have. It made my life miserable. It was my biggest problem. When I learnt that there was a solution, I decided to take it.
On a side note, gone are the days when we can follow advice on the internet, blindly. A lot of misinformation exists these days online. So, it is very important to discuss everything with your doctor before making any changes. And that includes information on this blog.