Guidelines for Living With RLS Are a Bit of a Challenge for Me

As with every disease, there are guidelines, tips, and instructions for living with and managing a disease, and RLS is no exception. For someone with multiple diseases (multimorbidity), this can be challenging because there are some things that are good for one disease but not good for another.

Having to avoid foods that might be beneficial

Where I find the biggest challenge is with disease diet — foods that are beneficial for the disease and ones that are bad or triggering. As I have IBS, there are so many beneficial foods that I can’t eat. I find this quite frustrating for the most part, although there are some perks.

When the sleep doctor told me I can't have caffeine because it will make my RLS worse, I told him that I can’t drink it because it messes with my heart. I feel like when I tell doctors I don’t drink alcohol, they don’t believe me. Thankfully, as many of my diseases get aggravated by alcohol, I get to say “I don’t drink, as it messes with my heart and my bowels.”

Getting exercise is another challenge for me

Another challenge for me is exercise. When I was a kid, I started developing issues with my joints. Often there was tons of pain, and sometimes there was swelling. The doctors never were able to figure out what the cause was, so I had to learn to live with the joint issues.

Joint pain and weakness

Running sends horrible jolts of pain up my spine. Now, on top of things, joints like to slip out on me even when doing absolutely nothing. My IBS can also make it difficult to exercise because there are times when gravity, or at least the act of standing, causes pain to eventually build up. Sometimes I am lucky to be able to stand for two minutes before the pain starts setting in. I also have to watch out for accidentally overdoing it, not just because it will aggravate my RLS but also my other diseases.

Exercise with chronic pain is a delicate balancing act

I learned through an interdisciplinary program for endometriosis that I took last year that it is an extremely delicate balancing act to be able to exercise when you live in chronic pain and have multimorbidities. Don’t even get me started on trying to exercise despite the constant fatigue... apparently, my brain fog and the extreme fatigue I am experiencing right now had me forget it's another major issue in trying to exercise.

Sticking to a sleep routine seems impossible at times

Following a sleep routine is a little bit tricky because of my other diseases and my husband working shiftwork.

I used to feel like it was something that was impossible whenever it was suggested to me before getting my RLS diagnosis. Pains interfered with my sleep a lot more back then, and I would often find myself up for an hour or two in the middle of the night needing to medicate. Having a set bedtime and wake-up time seemed beyond ridiculous to me, because my diseases dictated when I went to bed and when I woke up.

It's still not easy, but I have more control now

Thankfully, I experience fewer pains than before and have more control over my life now. It’s still not easy to do, but I no longer think it’s impossible.

It's not always easy following guidelines, tips, and instructions, but I try my hardest despite my limits.

Do you find it difficult to stick to guidelines and lifestyle modifications in order to manage your RLS symptoms? Which guidelines or tips have worked for you, if any? Share with us in the comments below!