Patients with Scleroderma, Vasculitis and Myositis may have various issues which can disturb their sleep.
Sleep is restorative, leaving us feeling refreshed and ready to start the day; it has a huge impact on quality of life. Restful sleep promotes good health and well-being. It can help protect your mental health, physical health and quality of life.
During sleep, your body is working to support healthy brain function and maintains your physical health. Hormones are released which are beneficial to your sleep/wake cycle and appetite balance. Sleep has different stages that cycle throughout the night. Certain stages help you feel rested and energetic while other stages help you learn and make memories.
Quality and quantity of sleep is important. The amount of sleep you need is unique to you. On average, adults require 7-9 hours each night. Current evidence points to the fact that not enough sleep can increase your risk for: accidents, cardiovascular disease, diabetes, obesity, depression, and substance abuse. To determine your needs for sleep, keeping a sleep diary is useful.
These are some of the most common conditions that can affect sleep; by no means an exhaustive list.
Patients with scleroderma and vasculitis may have severe pain due to Raynaud’s, ulcers, arthritis or other reasons. There can be a vicious cycle between increased pain which may lead to decreased sleep and decreased sleep may lead to increase pain.
Strategies for pain management including alleviating the source of the pain, taking pain medication 45 minutes to one hour before bedtime in order to give the medication time to work, using relaxation techniques, maintaining good sleep hygiene, exercise, and massage. If pain is due to the Raynaud’s phenomenon, be sure to keep your room warm and use other preventative measures to keep warm.
A number of medications can contribute to sleep difficulties. Corticosteroids (such as prednisone or methylprednisolone) in particular are often used in treatment of vasculitis and myositis and are all known to interfere with sleep. Even anti-malarials, such as hydroxychloroquine, can cause sleep difficulties and strange dreams. Taking such medications earlier in the day can be helpful in mitigating these effects. This, of course, must be discussed with your physicians.
Alternately, some medications can be used to help you sleep. Consult your physician before taking any over-the-counter medications (OTC) or herbal supplements along with your prescribed medications. Many OTC medications (nighttime cold remedies) and supplements (e.g. Valerian) may have effects that are additive to the effects of medications and may actually be dangerous for you.
Symptoms of acid reflux or gastroesophageal reflux disease may include: regurgitation, belching, or heartburn. Patients with this condition may have a severe cough when they lay on their backs. Most patients with systemic sclerosis have some degree of gastroesophageal reflux and patients with myositis similarly often struggle with esophagus issues. These symptoms can often be associated with sleep disruption.
Your doctor may recommend medical treatment with proton pump inhibitors or other antacids. Additionally, avoiding some foods may be beneficial. Foods such as:
Eat dinner 2 to 3 hours before bedtime and avoid lying down immediately after eating. While preparing for sleep, you may also find relief by propping yourself with your pillows at a 45 degree angle.
Frequent nighttime bathroom visits will keep you awake. Limit your fluid intake in the 2 to 3 hours before bedtime. If you require the use of a diuretic, be sure to dose this earlier in the day. If the problem persists, keep a diary of your symptoms and discuss with your doctor.
Insomnia is the inability to fall asleep or not being able to maintain sleep. Getting at the cause of the insomnia will determine the best treatment strategy. Causes include anxiety, depression, as well as other issues. Having good habits surrounding bedtime is important. These include:
Keeping a sleep diary and consulting a doctor who is specially trained in sleep medicine may help.
Sleep apnea is a condition is which breathing is interrupted throughout the night. This condition is diagnosed through a sleep center with the use of a sleep study. Partners of patients with sleep apnea may describe these apneic events or may complain of loud snoring. This condition left untreated can lead to serious health conditions such as hypertension, heart disease, stroke, excessive sleepiness during the day, irritability and depression.
Restless leg syndrome (RLS) and periodic limb disorder (PLD) fall into this category. RLS occurs when there is an irresistible urge to move the legs or a tingling, itching or creeping sensation and can be found in scleroderma patients with an increased prevalence when compared to the general population. The symptoms usually occur in the evening and make it difficult to sleep.
PLD is an involuntary movement of the skeletal muscles as one is falling asleep. Steroids often used to treat vasculitis or myositis can contribute to these types of night cramps.
Stress can make it difficult to fall asleep and stay asleep. The less you sleep, the more stressed out you become. Exhaustion can enhance symptoms of pain. Changes in a person's work environment or health status can also increase levels of stress. Maintaining good sleep hygiene is important to keep stress levels low.
Exercise is good for your overall health but the time of the day should be considered. Exercise will increase metabolism and body temperature and it can take up to 6 hours for your body temperature to decrease after exercise. As part of preparation for sleep, your body temperature naturally decreases closer to bedtime. Exercising too close to bedtime may make it difficult to fall asleep.
Exposure to sunlight can stimulate a nerve pathway to the brain which, in turn, can signal other parts of the brain; parts that control hormones and body temperature. Certain hormones, like melatonin, can either be released or inhibited which can contribute to making us feel awake or sleepy.
If you are feeling very sleepy, a short nap (20-30 minutes) may be appropriate to restore alertness. However, naps late in the day can interfere with your sleep cycle.
There is a relationship between depression and sleep. When you don’t sleep there is more likelihood that you will experience depression. Also, people who are depressed are most likely to experience problems with sleep.
Seasonal affective disorder (SAD) or “winter depression” is experienced as the daylight of autumn grows shorter and the night or darkness is longer. If you experience feelings of hopelessness, helplessness, sadness, thoughts of suicide, or a loss of interest in things that you once enjoyed, please seek medical attention as soon as possible. Help is available in the form of psychotherapy, medication and cognitive behavioral strategies.
If you think you may have a sleeping disorder, keep a diary and bring that information to your doctor to help her/him make a diagnosis. Your primary care doctor or Rheumatologist can help you to find a doctor that is board certified in sleep medicine.
When keeping a sleep diary, make note of the following elements for each day of the week:
Sleep is essential to your health and overall wellbeing. If you are not waking up feeling rested and ready for the day there are things that you can do to promote a restful night’s sleep.
Julie Pollino-Tanner, RN, MA
Nurse Manager, Department of Nursing, Hospital for Special Surgery