REM for the WIN

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Happy Friday everyone! A perfect day to write my first official blog post here!

As I mentioned in my “Fibromyalgia Diagnosis” page, the first rheumatologist (but most likely the 10th or 20th specialist) I was referred to, had immediately diagnosed me with Fibromyalgia and Chronic Fatigue at the very young age of 13 (today, it is more common to be diagnosed during middle age, certainly not in your early teens).

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The role of the rheumatologist is to diagnose (detect), treat and medically manage patients with arthritis and other rheumatic diseases. These health problems affect the joints, muscles, bones and sometimes other internal organs (e.g., kidneys, lungs, blood vessels, brain). Because these diseases are often complex, they benefit from the care of an expert. Only rheumatologists are experts in this field of medicine.

A rheumatologist aims to help patients with rheumatic disease to have the best possible quality of life. Toward this aim, rheumatologists advocate for the patient in all aspects of health care and in the community.

The rheumatologist teaches the patient, family and community about health information and how to live with a chronic (long-term) rheumatic disease. Topics can include medications, coping mechanisms, techniques for preventing disability or regaining function, and ways to improve quality of life.

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The first thing the rheumatologist discussed with me was my sleep, or lack thereof. Sleep is extremely important for a healthy person, but especially so for those with Fibromyalgia. Getting enough sleep and the right kind of sleep can help ease the pain and fatigue of fibromyalgia. Most adults need seven to eight hours of “restorative” sleep per night. Restorative sleep leaves you feeling well-rested and ready for your day to start when you wake up. It is hard for people with fibromyalgia to get a good night’s sleep.

Sleep problems are one of the most common complaints among people with fibromyalgia and chronic fatigue syndrome. With both conditions, poor sleep is a major source of intensified symptoms, and regardless of the number of hours slept, sleep is usually not restorative, meaning that people wake up tired rather than refreshed. Despite the medication to help me sleep, and other therapies I have tried, I have not woken up refreshed in over 20 years.

Addressing sleep problems is a good initial focus for symptom management because treating sleep can both improve quality of life and reduce other symptoms. Sleep management plans usually include a combination of strategies: sleep environment and habits, medications, and sleep disorders. In future posts, I will go into further detail around the other sleep habits I have adjusted over the years, outside of the medication to help my sleep.

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So, he prescribed me with a low dose muscle relaxant (10 mg) called “cyclobenzaprine” or “flexeril” and I was instructed to take it twice per day (once at night and once in the morning). According to my doctor, this medication was to help me sleep at night by relaxing my muscles enough to allow my brain and body to fall and stay asleep. During the day, it was to relax my muscles and ease a bit of the all over body pain I had been experiencing for the two years prior to my diagnosis.

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Cyclobenzaprine is a muscle relaxant. It works by blocking nerve impulses (or pain sensations) that are sent to your brain. Cyclobenzaprine is used together with rest and physical therapy to treat skeletal muscle conditions such as pain or injury.

Cyclobenzaprine is already widely used ”off-label” for patients with fibromyalgia. “Off-label” refers to the practice of prescribing medicines to treat conditions not been specifically approved by the FDA.

Researchers from the University of Toronto conducted a study on cyclobenzaprine, and they found that sleep quality improved with the total sleep time increased from an average of 5.7 hours to 6.4 hours in the treated group. Fatigue decreased somewhat. Additionally, pain declined 26%, tenderness improved 30%, and depression declined 22%.

Of note: I would say my pain, tenderness, and depression declined at the rates noted above when I take cyclobenzaprine, but as long as I sleep a MINIMUM of 9 hours. If I sleep anywhere between 7-9 hours my symptoms don’t improve from the day before, and if I sleep less than 7 hours, my body flares, which means the symptoms worsen.

A lack of sleep is thought to make symptoms of fibromyalgia worse. Once sleep is restored, the daytime symptoms may improve too.

When we sleep well, we wake up feeling refreshed and alert for our daily actives. Sleep affects how we look, feel and perform on a daily basis, and can have a major impact on our overall quality of life.

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REM provides energy to the brain and body, supports daytime performance, and the body becomes immobile and relaxed as muscle turn off and rest.

Sleep helps us thrive by contributing to a healthy immune system. The one-third of our lives that we spend sleeping, far from being “unproductive”, plays a direct role in how full, energetic and successful the other two-thirds of our lives can be.
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So, I filled the prescription, and that night was the first time in over two years that I had FALLEN AND STAYED asleep – it felt like a godsend. Individuals with fibromyalgia have difficulty getting to REM or stage four sleep, where your body is able to restore and repair itself, and this medication certainly helped finally get me to dream sleep. Although I had slept a full night’s sleep for the first time in a long time, I still woke up feeling groggy and fatigued and tired, both mentally and physically, but I was willing to take that over the frustration and pain of tossing and turning all night and not sleeping at all.

My body went through a few periods where the medication wouldn’t work and I either had to double the dose, or try something new. I think I tried three other medications in a similar category, but always came back to the cyclobenzaprine since it seemed to be what worked best on my body. It wasn’t a magic pill, but I was sleeping, which was more than I could say prior to my diagnosis.

I have now been on that same medication since the age of 13, and have not had to increase the dosage – I still take 10 mg at night about 30 minutes before bed. I don’t have perfect sleep like my boyfriend, but if I’m sleeping AT ALL, I call that a win. FORTUNATELY, cyclobenzaprine worked for me right away and I did not have to go through many different medications until I found one that helped me sleep. Unfortunately, this is normally a rare case, which I will discuss in further posts around my anxiety and depression medications, and medications for pain and other fibromyalgia symptoms.

Unfortunately, cyclobenzaprine is only prescribed for short term use (2-3 weeks), and there hasn’t been much testing done on the long term effects on the body. I don’t have a clue if the medication has been negatively impacting my body (aside from the blood work I get done yearly that comes out ok), but for now, I’m okay with not knowing since in my mind, it’s giving me the sleep I so desperately need.

Tomorrow I’ll be discussing other treatment medications that I have tried for fibromyalgia, some of which helped, and others that hindered my improvement and life.

A question for you, the reader: If you have been diagnosed with fibromyalgia or another chronic pain disorder, have you been prescribed a muscle relaxant like cyclobenzaprine for sleep or to take during the day? Have you had a positive or negative experience with these types of medications? I would love to hear your experiences with this type of medication.

Thanks for stopping in to read my very first blog post! Looking forward to chatting with you!

xoxo Lex

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8 thoughts on “REM for the WIN

  1. Hey, Lex! First off, good 1st post! I’ve been through Flexeril, totally ineffective. I take a half of a Seroquel (Quetiapine) 200mg (100mg 1/2), and in 40 minutes my lids won’t stay open. I actually feel more effect from the Seroquel than the Morphine! Keep posting! Looking forward to more.🌵💜🌞👍

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  2. Thanks so much Rick! What dosage of Flexeril did you try? I know several individuals who it worked for like myself, and others, not so much. I am going to google the medication you posted here – do you find that you are super groggy and fatigued in the morning? Do you ever wake up feeling “refreshed”? How much sleep does this give you vs. how much do you tend to find you need? When you say the Seroquel works better than the Morphine, I’m assuming you mean to help with the pain so that you can sleep?
    Sorry for all the questions, I’m very intrigued!
    -Lex

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      • ya it does help my back. if it hurts acutely and doesn’t break up then i add hydrocodone and that does the trick. i also take cymbalta for depression, and i wonder how much help it gives my fibro as well.

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  3. Interesting Kat! I’m on narcotics for my pain as well. I’ll be chatting about that in my next post. I may start taking the flexeril during the day again for my severe back spasms to see if it helps relax it enough, just hoping the medication doesn’t put me to sleep like it did as a kid!
    I’m glad you’ve found a combinations of things that help. I’ve gone through a lot of different medications over the years, and lately I’ve been trying to find other treatments in order to reduce the amount of medication I’m consuming. Are you on any others?

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