Proper Sleep Is Crucial to Managing Fibromyalgia

It’s a vicious cycle: A poor night’s sleep makes your fibromyalgia symptoms worse, and then the pain makes it hard to fall asleep at night. Restless legs syndrome, a problem for many people with fibromyalgia, also can keep you from getting the rest you need.

Sleep is a crucial piece of the fibromyalgia puzzle. In fact, some research shows that disruptions during the deepest levels of sleep can cause the onset of fibromyalgia symptoms.

Try these suggestions to get better sleep:

Adopt a daily routine

Try to go to bed and wake up at the same time each day. Avoid daytime napping and create a nighttime relaxation ritual. This could include a warm bath, reading or listening to music as a way to wind down.

Watch your diet

Avoid caffeine and alcohol in the late afternoon and evening. Caffeine can make it harder to fall asleep and alcohol can disrupt sleep. Also, avoid spicy or fried foods if they cause heartburn or indigestion. And so your bladder won’t wake you, try not to consume any liquids right before bed.

Time your workouts

Exercise can help you sleep better at night. Some experts advise finishing at least three hours before bedtime because the stimulation may make it difficult to fall asleep right away. Others, however, point out that exercise can relax you and help you fall asleep shortly after participating in it.

Medication can help

If lifestyle changes are not enough, medication is an option. Tricyclic antidepressants can help you achieve restorative sleep, but they may leave you drowsy during the day. If you have restless legs syndrome, your doctor may prescribe sedatives such as diazepam (Valium). On the downside, the extended use of benzodiazepines can lower your pain threshold and ultimately exacerbate pain. Plus, they can be extremely addictive. Sleep medications and muscle relaxants can also help, so talk to your doctor about your options.

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No Matter The Limits

It is such a relief when you first find out

That the pain really does have a name,

And then you will ask (and everyone does),

"Just where can I place all the blame?"

Mo matter the limits, no matter the pain,

There's no evil. cruel "Master Plan."

It just simply happens, It just simply is.

You adapt, and you change what you can.

But even with knowing the best and the worst,

All the pitfalls the future could hold,

You still have a choice, you quit or you fight.

You determine the story that is told.

And every small step that we take, my dear friends,

Each battle that we slowly win,

Just credits the love and the caring we share

With the FMily that we call our friends.

by Rita Shaw

Arthritis Footcare: It's in the Shoes

Many forms of arthritis commonly affect the feet. When they do, walking can be difficult and painful.

Osteoarthritis frequently causes degeneration of the cartilage and bony spurs at the base of the big toe. This is what leads to bunions. Wider shoes may be necessary. High-heeled and pointed shoes should be avoided since they can put unnecessary pressure at the point of the bunion. Degeneration of the arch of the foot can lead to spur formation on the top of the foot. This can put pressure on adjacent nerves of sensation, which can cause burning of the foot and toes. When this discomfort occurs, patients should avoid tying the shoe tightly or wear a shoe that does not bind at the point of the spur.

Rheumatoid arthritis causes inflammation of the joints at the ball of the foot, which loosens their ligaments and can cause the bone to push against the skin of the bottom of the foot. This can lead to tender calluses and ulcerations at the ball of the foot, which may even require surgical repair. A bar of leather attached to the bottom of the shoe behind the arch of the foot can help by displacing pressure from the ball to the middle of the foot. Further rheumatoid deformity can cause the toes to cock up, which can lead to abrasion of the tops of the toes.

Box-toed shoes can be extremely comfortable for persons with these deformities. Lumps of soft tissues, called nodules, can form on the sides of the foot, heel, or on the toes. Nodules can ulcerate from abrasion of shoes. Sometimes, slits cut into the shoe at the point of the nodules can help to relieve painful pressure. Furthermore, non-tie style laces are now available, thus making it easier for persons with rheumatoid arthritis to fasten the shoes.

 

Gout can cause hard deposits of uric acid crystals to form a lump at the inner side of the base of the big toe. Depending on the size of the deposit, there can be abrasion and even ulceration from the shoe. Wider style shoes can be helpful.

Occasionally, doctors will examine the shoes that a patient has worn to find evidence of deformity (for instance, a shoe leaning to one side or another), wear, and alignment. The independent shoe exam is like a history book of the use of the foot over recent months. It can sometimes be used to help define not only causes of foot pains, but also ankle, knee, or hip pains.

In general, running shoes are frequently an advantage because of their lightweight. Proper shoes can provide welcome relief and often improved function for patients with foot damage from arthritis. When picking out a shoe, ALWAYS try on several pair and walk around in them before purchasing. The salesperson will understand that you are interested in both function and comfort.

Great-fitting shoes are worth investing time and effort. Be kind to your feet and they will get you where you want to go!

Happy Trails

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Pray for All Fibromyalgia Sufferers

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What You Should Know About Me

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Meditation Music Monday

Why Don't Painkillers Work For People With Fibromyalgia?

People who have the common chronic pain condition fibromyalgia often report that they don't respond to the types of medication that relieve other people's pain.

New research from the University of Michigan Health System helps to explain why that might be: Patients with fibromyalgia were found to have reduced binding ability of a type of receptor in the brain that is the target of opioid painkiller drugs such as morphine.

The study included positron emission tomography (PET) scans of the brains of patients with fibromyalgia, and of an equal number of sex- and age-matched people without the often-debilitating condition. Results showed that the fibromyalgia patients had reduced mu-opioid receptor (MOR) availability within regions of the brain that normally process and dampen pain signals -- specifically, the nucleus accumbens, the anterior cingulate and the amygdala.

"The reduced availability of the receptor was associated with greater pain among people with fibromyalgia," says lead author Richard E. Harris, Ph.D., research investigator in the Division of Rheumatology at the U-M Medical School's Department of Internal Medicine and a researcher at the U-M Chronic Pain and Fatigue Research Center.

"These findings could explain why opioids are anecdotally thought to be ineffective in people with fibromyalgia," he notes. The findings appear in The Journal of Neuroscience. "The finding is significant because it has been difficult to determine the causes of pain in patients with fibromyalgia, to the point that acceptance of the condition by medical practitioners has been slow."

Opioid pain killers work by binding to opioid receptors in the brain and spinal cord. In addition to morphine, they include codeine, propoxyphene-containing medications such as Darvocet, hydrocodone-containing medications such as Vicodin, and oxycodone-containing medications such as Oxycontin.

The researchers theorize based on their findings that, with the lower availability of the MORs in three regions of the brains of people with fibromyalgia, such painkillers may not be able to bind as well to the receptors as they can in the brains of people without the condition.

Put more simply: When the painkillers cannot bind to the receptors, they cannot alleviate the patient's pain as effectively, Harris says. The reduced availability of the receptors could result from a reduced number of opioid receptors, enhanced release of endogenous opioids (opioids, such as endorphins, that are produced naturally by the body), or both, Harris says.

The research team also found a possible link with depression. The PET scans showed that the fibromyalgia patients with more depressive symptoms had reductions of MOR binding potential in the amygdala, a region of the brain thought to modulate mood and the emotional dimension of pain.

The study subjects were 17 women with fibromyalgia and 17 women without the condition.

The senior author of the paper was Jon-Kar Zubieta, M.D., Ph.D., the Phil F. Jenkins Research Professor of Depression in the U-M Department of Psychiatry and a member of U-M's Molecular and Behavioral Neuroscience Institute, Depression Center and Department of Radiology. Other authors were Daniel J. Clauw, M.D.; David J. Scott, Ph.D.; Samuel A. McLean, M.D., MPH; and Richard H. Gracely, Ph.D.

The research was supported by grants from the Department of the Army; the National Center for Research Resources, a component of the National Institutes of Health; and the NIH. Harris was supported by an NIH--National Center for Complementary and Alternative Medicine Grant. McLean was supported by an NIH grant.

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Reference: The Journal of Neuroscience, Sept. 12, 2007, 27(37):10000--10006.

Fibromyalgia Survivors Creed

Find joy in each day. There is joy in each day ~ ~

it is up to each of us to overcome our obstacles and find it.
When I find it, I will claim it as my own.
I will feed my soul. 
Investigate medical developments so that I can be an active partner in my treatment
I will not place my well-being in someone else's hands out of ignorance.
I will accept responsibility for myself. 
Be true to myself above all things.
I can give to others only when I am well.
I will take proper care of myself. 
Respect the needs of my family, friends and co-workers.
This is not their problem and I cannot force their acceptance or understanding.
I will accept only that support which is offered freely.
But that doesn't mean I have to accept "garbage" from insensitive, uncaring people.
I will stop trying to live up to the unrealistic expectations of other people. 
Offer support and encouragement to others.
Nobody succeeds on his or her own.
I will be there for others when they need me. 
Make every day count. My body may refuse to co operate,
but the strength of my mind and spirit cannot be diminished or defeated.
When I cannot do what I would ordinarily choose to do,
I will choose to do something else. 
Yield to the symptoms of this disease as necessary without
surrendering my life or myself. This disease does not define me.
My life is my own and nothing will diminish my value as a person.
I will guard the essence of myself. 
Afford myself certain allowances.
I will not pressure myself into performing non-essential functions
when circumstances make them impossible. If they can't wait, I'll ask for help.
I will be my own best friend.

Laugh heartily and often. A light heart is easier to carry.

I will carry only the burdens necessary and dispose of the rest. 
Give thanks to God for the many blessings He/She has bestowed on me.
And I will look for ~ and be grateful for ~ the hidden blessings of this disease.
I will trust in God. 
Invest my energy only in positive thoughts, positive actions,

and positive people.  Negativity depletes my reserves. 
I will use my energy in positive ways.Accept that which I cannot change-but only that which I cannot change.
I will not use this disease as an excuse for failure or for not making a real effort.
I will not give up. I will not be a victim. I will survive.

Grieving the Loss of a "Normal" Life

Growing up a tomboy, living in the Adirondacks of upstate NY, I was very active with outdoor activities...Camping, ice fishing, and skating topped my list of favorite things. I also enjoyed snowmobiles and hiking and riding my all-terrain 10-speed. Archery was a family sport for me and we shot and competed regularly. I became a nurse and dedicated much of my career to caring for the elderly. I found it very rewarding.

Several years ago while working in long term care, I suffered a lifting accident that changed my life forever. During a complicated surgery, I hemorrhaged - losing over 4000cc of blood my chart said. For a short while, I had no blood pressure and I required resuscitation. The doctors were wonderful though and knew what they had to do and they did it and I am here today.

For months following the surgery, I worked with therapists to regain the strength in my legs-- which loss much of their feeling as well as function. My initial endurance was 5-10 minutes before they would buckle. I suffered severe back spasms and my husband helped me overcome them by actually performing stretch exercises with my legs using his own weight to counteract my body's strength. After close to a year of extensive therapy, I progressed from a walker to a cane and thankfully today I am close to cane-free. When my back acts up, the legs still weaken so I still need and use it from time to time.

I remember what it was like when I realized my life would never be "normal" again. I would never do bedside nursing again. The doctor told me it would be too much of a risk to do any lifting, pushing or pulling over 10 lbs or remain on my legs for extensive periods of time. I was devistated. I had spent so much time and commitment learning and becoming a good nurse and now it was all over. My career as I saw it ended way too soon. Taking part in any activities that have risks of falls was now out. That took out skating and ice fishing for sure. I just sat there and thought about my life and realized that everything I enjoyed most was now off limits to me if I was going to protect my ability to walk. I felt I had been robbed and cheated out of what I enjoyed most and had worked so hard to achieve.

I also found the experiences of walking with assistive devices to be a humbling experience. I remember the challenges of going to a fast food restaurant and trying to balance a tray while walking with a walker or a cane. It was incredibly difficult and I gained a new appreciation for others in similar situations. I also struggled with my pride. In my eyes, good nurses were not supposed to get sick, hurt or require help. We are not supposed to walk with walkers or canes. We are the ones who are to help others. I know this is not an accurate portrayal of a nurse because nurses are people and people can and do get hurt, develop disease, and experience significant pain. But it was the image I had developed in my own mind and I had to accept the fact I was wrong.

I went through a period where I didn't want people I knew to see me like I was. I worked extremely hard to perfect my new walk and conceal the slight limp and the fact I would sometimes have to walk by swinging my leg from the hip when it failed to respond like it should. It is something I know I will have to deal with for the rest of my life but I am ok with it now.

Being an independent female much of my life, I think the hardest thing I had to accept was the fact I would need to rely on others to help with certain things I had ordinarily done by and for myself. I still struggle with that one and probably always will.

During these past few years, I have grown a lot from the experiences I have endured. I learned all too well what chronic pain is and how it can rob a person of their life if not treated and accepted. I can now look at the experiences and see a silver lining rather than a hole. I have permanent damage and deal with the complications that remain but I am very thankful for what I have and what I can continue to do.

I remember when the doctors said I would never be able to work full time again and I set out to prove them wrong. I started exploring my options based on my knowledge, experiences, interests, and talents. Soon I landed a job I could perform and enjoy. In fact, for the past several years, I have worked two jobs and managed to go to school as well. And I continue to enjoy what I am doing. I am no longer at the bedside but I feel what I do is meaningful.

I have learned a few things along my own life journey that I would like to share.

It is important for folks who suffer debilitating pain, disease or dysfunction to realize it is normal to grieve the loss of your former self. The lifestyle you knew may need to be changed in order to accommodate your limitations. Allow yourself to go through the grieving process.

It might be helpful to seek out a grief counselor if necessary and consider a pain management program that will not only teach you how to cope with chronic pain, but one that will also help you develop new goals and a new direction for your life.

Sometimes life is not fair but we have to live it. It is ok to seek out the help of others when learning to cope with loss and change.

It helps to try searching for the positives and not dwelling on the negatives.

It is important to be thankful for what you have and can do rather than what you have lost.

I have found learning to be creative and finding alternative approaches to some activities can be very helpful. Doing so may enable you to remain involved in favorite things even if it is in a limited or different capacity.

Avoid saying "I can't do it." or "It won't work." Unless you have tried it, you have no right to say that!

Surround yourself with positive people who can help you during the down times. There are bound to be times when you will feel down and discouraged. It is important to have a plan on how to handle these times before you actually find yourself in the midst of them. Make a little list of folks you can call on during these times.

It is ok to feel sorry for yourself a little once in a while. It is important however, to avoid doing so too long or too often. There is a strong connection between the mind and the body. Keeping your mind full of positive thoughts and emotions will help you feel better and cope more effectively with the challenges you face.

Everyone has their own life journey to walk. There is no perfectly right or wrong way to walk it. I feel it is best to seek and learn from others as well as ourself. Try to do the best we can--one day at a time.

By Indie Cooper-Guzman, RN

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