Fibromyalgia & Chronic Fatigue Syndrome

1. Intro
 
 

Fibromyalgia and Chronic Fatigue Syndrome Support Group

Your body aches, your muscles hurt, and you are severely fatigued.  Light to deep pressure causes discomfort of the muscles - and it doesn't seem to go away.  Sometimes your skin seems so sensitive, even air "hurts."  Your mind sometimes feels like it's in a fog, with impaired concentration, memory problems and sometimes an inability to do even the simplest of tasks - this "fibro fog" can attack anytime, anywhere, without warning....or sometimes feels like it never leaves your side.  Sleep is a challenge at best.  You never seem to know how you'll feel from day to day.  Sometimes you can't get out of bed; other times you feel almost "normal," whatever that has become...but those "good" days can be pretty rare.  It's hard to plan things because you never know how your symptoms might be the next day, the next week...and it's so frustrating never knowing.  Complete relief seems a fantasy.  Temporary relief can be a struggle in itself.
You are anxious about these symptoms, and never seem to get the answers you need. You may have heard, "It's all in your head," or "buck up."  It's especially frustrating when you hear the words "but you don't LOOK sick!"  Dealing with family, friends and even the medical community has you feeling overwhelmed, confused, or worse.

Support Group Info

The Fibromyalgia and Chronic Fatigue Syndrome Support Group is led by JoAnn Willingham (with Husband, Dennis) and meets at noon on the first and third Wednesdays of each month.  Meetings are held at the HCHF meeting room, 94 Acoma Blvd. S. Ste. 101 unless otherwise noted on our calendar.  The group has developed a supportive atmosphere where you can ask questions, obtain current information and research, and express your feelings.  You will find that you are not alone in what you feel.  We discuss signs and symptoms, causes, risk factors, complications, treatments, self-care, alternative medicine treatments and coping skills. 
 
 

Fibro Open Letter

Hi. . . My name is Fibromyalgia, and I'm an invisible Chronic Illness.
 
I am now velcroed to you for life.  Others around you can't see me or hear me, but YOUR body feels me.  I can attack you anywhere and anyhow I please.  I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.  Remember when you and Energy ran around together and had fun?  I took Energy from you, and gave you Exhaustion.  Try to have fun now!  I also took Good Sleep from you and, in its place, gave you Brain Fog.  I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
 
Oh, yeah, I can make you feel anxious or depressed, too.  If you have something planned, or are looking forward to a great day, I can take that away, too.  You didn't ask for me.  I chose you for various reasons:  That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma.  Well, anyway, I'm here to stay!
 
I hear you're going to see a doctor who can "get rid" of me.  I'm rolling on the floor, laughing.  Just try.  You will have to go to many, many doctors until you find one who even BELIEVES I EXIST.  You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise more I will go away, told to think positive, poked, prodded, and MOST OF ALL, laughed at when you tell the doctor I am debilitating.
 
Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a real disease.  Some of them will say things like, "Oh, you are just having a bad day," or "Well, remember, you can't do the things you used to do 20 YEARS ago." not hearing that you said 20 DAYS AGO.  Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next!  Eventually, most of them will be like all the doctors who say "It's All In Your Head."
 
In closing, (I was hoping that I kept this part a secret, but I guess you already found out,). . .The ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.
 
Terri Been
 
 
 

Getting a good night's sleep

1. Synchronize your biological clock

  • Go to bed and wake up at the same time each day - keeping a regular schedule is important. (Sleeping in reduces the drive for sleep later that night; early bedtime confuses your brain's rhythm.)
  • Avoid daytime naps, but if you must nap, make the naps less than one hour, before 3:00 pm, then delay bedtime.
  • Have a regular routine for meals, meds, chores, etc., to get your inner body clock running smoothly.
  • Get at least 30 minutes of natural light each day, and limit light when you want to sleep.

2. Train your brain to view the bedroom in the right way

  • Use the bedroom ONLY for sleep and sex. No TVs, computers, work desks, etc. in the bedroom. Do not eat, read, write, talk on the phone, play cards, etc. in the bedroom.

3. Set up comfortable sleeping conditions

  • Your bedroom should be dark, quiet and a little bit cool. (Bats sleep in a cool, dark cave - for 16 hours)
  • Consider using blackout curtains, eye shades, earplugs, white noise, humidifiers, fans, etc.
  • Remove or cover sources of nighttime lights such as LED clocks or razor chargers. Rearrange bedroom furniture and/or remove items that might cause slips or falls in the dark.
  • Make the bedroom free of interruptions, noise or other distractions; close your bedroom door.
  • Set your alarm, and then hide the alarm clock.
  • Have a comfortable, supportive, allergen free mattress and pillow.

4. Create the right bedtime routine

  • Complete daytime/arousal activities and then allow a "cool down" period to help prepare for sleep.
  • Discontinue activities like paying bills, working, family problem solving, competitive games, and stimulating reading or TV (anything that stimulates the brain) BEFORE the pre-bedtime cool down period.
  • Cool down activities should allow you to distract and relax your mind and body.
  • Consider routines such as a warm bath, a light snack, reading a calming book or listening to soft music.
  • Consider meditation, a gentle massage, muscle relaxation or sleep tapes as an aid to sleep.
  • Include affirmations that sleep will be easy and restful.
  • Work on reducing the stress and anxiety in your life so you are not haunted by them as the evening unfolds.
  • You may also want to keep a regular journal at night to list all issues that are of concern - this transfers your worries from your thoughts to paper, allowing your mind to quiet down.
  • If worries persist, try writing a "to do" list for the next day, then let it go.tomorrow's another day.

5. The role of exercise in helping or hurting sleep

  • Exercise regularly, not sporadically (consult your doctor for appropriate exercise).
  • No strenuous exercise within six hours of bedtime. Exercise makes us more alert and raises our body temperature - it takes up to six hours to drop the temperature back down.
  • It is best to complete regular exercise no later than three hours before bedtime.
  • If you are unable to regularly exercise, try to stay as active and productive as possible. Avoid isolation.
  • It is helpful to try yoga or gentle stretching exercises in the evening to help relax your body and mind; slow, deep breathing will help as well. Always clear any exercise program with your doctor.

6. Foods and substances that help and hurt sleep

  • Eat at regular times each day.
  • Maintain a healthy diet, limiting processed foods, sugar or "junk foods".
  • Eat a healthy, nutritious breakfast, and consider having your largest meal at lunch rather than dinner.
  • Avoid large meals before bedtime - eat dinner at least two to three hours before bedtime.
  • Avoid too much liquid in the evening - you will minimize trips to the bathroom at night.
  • Don't go to bed hungry - consider a light bedtime snack with some carbs and a little protein.
  • Don't eat too much protein before bed - it has TRYOSINE, which stimulates brain activity.
  • Foods that help sleep include dairy, oats, bananas, poultry, peanuts (sources of TRYPTOPHAN).
  • At bedtime, try combinations such as: crackers with cheese, yogurt with granola, cereal with low fat milk, or peanut butter with toast.
  • Avoid heavy or spicy foods; also onions, fats, fried foods and chocolate. These foods can cause GERD. (GERD is associated with insomnia, sleep apnea, restless leg syndrome and daytime sleepiness.)
  • To minimize GERD effects at night, try sleeping on your left side, and elevate your head and shoulders.
  • Avoid substances that delay or disrupt your sleep, such as over-the-counter and herbal remedies for coughs, colds and allergies, and ask your doctor if your prescribed medications can be taken in a way that minimizes any disruption of sleep.
  • Talk with your doctor about managing your pain, so at night you can concentrate on sleep.

7. Caffeine, nicotine, alcohol

  • Avoid or limit nicotine - it is a stimulant.
  • Alcohol can cause frequent awakenings and unrestful sleep. If drinking wine, beer, etc., avoid it within six hours of bedtime. Never mix alcohol with sleeping pills.
  • Minimize caffeine, which can be found in chocolate, coffee, tea, colas and other foods - it is a stimulant that can interfere with sleep (although different individuals react differently to caffeine).
  • Caffeine can stay in the body 3 to 12 hours, so it is best to avoid it after 12:00 noon if you are sensitive.

8. What to do if you can't fall asleep, or if you awaken at night

  • If you cannot get back to sleep within 15-30 minutes, get out of bed and move to another room.
  • Use this time to clear your mind; do not use it to solve or dwell on daily problems.
  • Avoid stimulating activities, but rather, engage in a quiet activity until you feel sleepy.
  • Consider sitting in a dark room, telling yourself you MUST stay awake - sleepiness may just set in.
  • Go back to bed once you feel sleepy.
  • Once back in bed, repeat the above if you are still not able to fall asleep in 15-30 minutes.
  • The number of times you have to get out of bed each night should decrease over time.

9. The role of sleeping pills and medication

  • Avoid sleeping pills, or use them cautiously. If you are already on sleeping pills, talk with your doctor about weaning them down. Remember, there are many things we can try on our own to help us with sleep - it just takes commitment, vigilance, and a lot of practice.

10. Keep in mind....

  • If your efforts to improve your sleep are not working, consider keeping a detailed sleep diary, and seek help.
  • There are psychologists that specialize in sleep disorders; it's also important to seek help from your regular MD. You may be referred for biofeedback, relaxation training, stress reduction, cognitive behavioral therapy, etc. They may modify your medications or assess you for other issues such as sleep apnea, restless leg syndrome, pain management, and other conditions that may be playing a role in your sleep difficulties. Seeking help sooner rather than later is important so that interfering issues can be identified and properly treated.