(<<Back to Sleep…)
Anywhere between 75% and 90% of people with Complex Regional Pain Syndrome or CRPS suffer from a sleep disorder including insomnia and disrupted sleep patterns. There is a combination of issues that will cause this including pain, Allodynia(extreme sensitivity to touch, sound, vibration, barometric pressure changes, loud noises, wind, temperature, clothing or the touch from a fellow human being), sweating, itching, burning, and muscle spasms. It possible to have some, none or all of these issues.
Pain- The main physical issue for insomnia and a disrupted sleep pattern is the pain. As bedtime approaches our mind relaxes and when there are no distractions our mind can now focus on the pain.
Then, after falling asleep, the pain can keep waking you up throughout the night and keep you from getting quality REM sleep. REM stands for ‘rapid eye movement’ and is named for the part of the night’s sleep that has an increase in eye movement and brain activity. When we do not go into REM sleep regularly it can cause problems all the next day and can aggravate all the other CRPS symtoms like memory, anxiety and can actually increase our pain. This is why someone can sleep for a full 8hrs yet still feel fatigued the next day.
One thing that might help, is finding the perfect time to take your medications before going to sleep. I feel that taking them 1 hour prior to going to bed works best. Also, using your counting and breathing techniques. Another possible way to help with the pain is thinking of a quiet, peaceful place and concentrate on every single detail, the sights, the sounds and the smells. I use a beach, and I am sitting running the sand through my toes.
Skin sensitivity- Along with pain, there is also Allodynia or skin sensitivity. This is why bed sheets and blankets can feel like sandpaper. The sensation is absolutely excruciating and is absolutely mind boggling at the same time. We can have the softest of bedding that feels so wonderful to the touch of non-CRPS limbs, but to the affected limb, it is just too uncomfortable to fall asleep or stay asleep.
On the nights when the blankets are feeling like sandpaper here is an item I saw that might help. A bed fan(no cash kickback for this) that circulates air under the blankets. I have not bought one, but it might be worth checking out.
Spasms- Spasms can cause either just the affected limb or parts of the entire body to convulse. This jerking of the will affect falling asleep and getting quality REM sleep if it happens during the middle of the night. This can also affect anyone trying to sleep next to you.
We had a great spring mattress, but as my CRPS went on, my wife was getting less and less sleep. We decided to buy a mattress that would keep her from feeling every jerk or movement. For me, I have spasms all over my body and they come and go. They don’t just happen at night, but all through the day also, I have the bruises to prove it.
We purchased a Leesa(Use this link and buy a mattress, you get $75 and I get $50) bed to battle the jerking. We absolutely love it, and my wife is finally getting good sleep again. No, I am not just saying this for the $50, I promise you. For us, we did spend an extra $100 for a good mattress topper because we were used a pillow top, but besides that, we swear by it.
Anxiety- Bedtime is also the worst time for anxiety and over thinking. We have no distractions, so the mind can wander. Some nights, there is nothing specific, I just can;t turn my brain off. Other nights, I worry about the disease, my future, my wife and how I want my life prior to CRPS back.
The ways to beat this are very similar to the suggestions to use for pain. Use your counting and breathing techniques. Think of a quiet, peaceful place and concentrate on every single detail, the sights, the sounds and the smells. Go to your ‘happy place’. Also, do the things that you used to do prior to the CRPS. Before going to bed read a book, watch TV, listen to music, do a puzzle, cry, masturbate or yoga, whatever it takes. Try not to just lay in bed and let your mind just wander, that is not a good thing to do.
Sleep is so important anyone, but especially for CRPS sufferers to feel better the next day. We will more irritable, anxious, tired and more depressed than we already are. It all is part of the snowball effect I spoke of earlier.
Both our mind and body are ravaged by CRPS. We need to treat our mind just as much as we treat our body, they are mutually vital to our well being. When we get a good night sleep, we feel better, have more energy and are generally in a better mood. Our body needs sleep to heal, especially with a chronic disease like CRPS.
I have given some ideas battle the sleep disorders, but sometimes those techniques and options are not enough. Sometimes we need help. Be sure to discuss with your doctor any over the counter sleep aids you want to take, but your doctor may choose to prescribe a sleep aid for you. Nortriptyline is a common off-label sleep aid for CRPS because it also helps with depression. I take this medication to keep me asleep, unfortunately, it does not help me fall asleep, so I use the techniques talked about earlier.
We need to remember that all of these issues with sleep is perfectly normal for someone with a disease like CRPS. This is what happens to us and we have to deal with it head on, never give up. Having CRPS is not easy and it is a constant uphill battle. We must be strong and never be afraid to ask for help.
You are NEVER alone in this battle!