In this post
I wanted to share a bit about my journey with RLS and CRPS.
If you are new here, welcome.
I am Bee and I have had Restless Leg Syndrome (RLS) and Complex Reginal Pain Syndrome (CRPS) for over 25 years.
In this post, you are not just reading about tips and facts but a true story from a real-life, ordinary pain sufferer.
My aim here isn’t just to convert you into a long-term reader and subscriber, although that would be awesome. But to share what little knowledge there is about these two awful conditions.
I want to make a difference, I want to help someone like me.
It’s been quite the ride, but I’ve learned a lot along the way. I hope this helps someone who might be feeling confused or alone.
Enjoy and don’t forget to comment at the end, I love hearing from you and subscribe to get access to FREE printables, newsletters, the latest posts and more.
What is Restless Leg Syndrome (RLS)?
RLS is exactly what it sounds like. A feeling that you have to move your legs, especially when you’re resting or trying to sleep.
For me, it feels like a mix of tingling, itching, and just plain discomfort, sometimes painful. It’s like there’s a little motor in my legs that won’t shut off.
If you are suffering then you will know how this affects all aspects of your life.
Sometimes I can keep it at bay by wiggling my toes, other times I move my entire body to get some relief.
My legs move without my permission.
It keeps me up at night, which is frustrating and exhausting. I may get up at least 5 times in one night to do some light exercise, which gives me temporary relief. Unfortunately, this makes my CRPS worse.
Can’t win, can I?!
Doctors aren’t 100% sure what causes RLS. But they think it’s linked to how the brain handles dopamine. “Dopamine also has a role to play in controlling memory, mood, sleep, learning, concentration, movement and other body functions.”
Some people might also get it because of low iron levels or genetics, thanks, family!
What is Complex Regional Pain Syndrome (CRPS)?
CRPS is different from RLS but just as challenging.
It’s a chronic pain condition that usually happens after an injury.
I am a little special in the sense that I developed this at the age of 10 and no injury occurred. This makes my case quite unusual. Read my full story on CRPS here.
Having CRPS means a small bump can cause extreme pain that doesn’t go away anytime soon.
My skin can feel super sensitive, and I even have changes in how my skin looks, like swelling and redness.
It’s like my nerves are on high alert all the time, and they don’t know how to calm down.
Are RLS and CRPS Connected?
At first, I didn’t think these two conditions were related, but they might be.
Some research suggests that people with CRPS could be more likely to have RLS.
Both involve the nervous system, so it makes sense that there could be some overlap.
That’s why it’s so important to talk to your doctor about all your symptoms. They might be connected in ways you don’t expect.
Getting Diagnosed with RLS and CRPS
Getting diagnosed wasn’t quick or easy.
For me, I got my RLS diagnosis at the same time as my CRPS one. I had been given many other diagnoses throughout my life but was later proved wrong.
For RLS, you may have to explain your symptoms to a sleep specialist.
CRPS is trickier.
It took several doctors and 25 years of lots of tests to figure out what was going on.
My doctor looked for signs like extreme pain, sensitivity, and changes in my skin or swelling. It’s often ruling out many other conditions first.
Don’t give up, you know you best and you are an expert on your pain.
Treatments and Self-Care
Because I had a good relationship with my doctor and we had already ruled out many conditions. He put me straight on Pramipexole.
This changed my life!
However, most people may start with lifestyle changes. Cutting back on caffeine and making sure you get enough iron.
Sometimes I’ll stretch or take a warm bath before bed to relax my legs.
I started using Magnesium spray some months ago but I’m not sure if it’s actually helping. Let me know what you use.
CRPS needs more intense care.
There is no cure for either of these conditions. Unlike medication for RLS, there isn’t really anything for CRPS.
I have used many different medications, herbal and otherwise. Nothing helped. This does not mean the same thing will happen to you, though. So don’t just take my word for it. You don’t know till you try, right?
Physical therapy may be of help to you.
The humidity makes my pain levels higher as does the height of summer and the coldest times of the winter.
We bought a dehumidifier and it made a massive difference. I was very sceptical at first. I’m not saying it makes it go away but it definitely helps me get an extra few hours of sleep. Sometimes.
I also like to keep a journal of pain, diet and sleep records. This is not only helpful when going to appointments but also for seeing patterns monitoring new medications and so on.
Stress makes CRPS worse, so I started meditating and using techniques to calm my mind. It’s amazing how much that helps!
With CRPS your breath is your biggest help.
Living with Both Conditions
Balancing RLS and CRPS is tough, but I’ve found ways to make it work. Sometimes.
I stay active but listen to my body. If I need to rest, I let myself rest.
Guilt-free
I am a home-educating mum of two and expecting my third so I’m always on the go. It’s making sure I don’t overdo it that’s hard for me.
I’ve also learned the importance of finding a good doctor who listens and takes me seriously.
NEVER GIVE UP.
The most important thing is to stay positive.
I know that sounds like a clique but when we have low moods our pain increases.
Read 7 tips for dealing with depression.
It’s easy to feel frustrated or isolated.
CRPS is called the suicide condition in the US, that’s how challenging this condition can be.
Connecting with others who understand can make a huge difference.
I’ve found support groups online where people share tips and encouragement, it’s a reminder that I’m not alone. Try it yourself here.
If you’re dealing with RLS, CRPS, or both, hang in there.
The pain will never go away and it might take time to figure out what works for you, but you can do it.
Your body might be complicated, but you’re stronger than you think!
Please contact me below if you have any questions or tips. I love hearing from you and learning how to manage these conditions better myself.
Thanks for reading.
Your supporter…..Bee x
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