FibroBlog

My rules for eating to decrease pain

2010-08-16T16:51:00.000-07:00

I have 16 years of “experience” in fighting fibromyalgia, and I’m here to tell you that nothing makes more of a difference in my pain level than what I eat and what I do not eat. My rules have evolved over time. I don’t stick to them absolutely, but when I start to feel poorly, I can almost always make myself feel substantially better by getter stricter with these rules.

My rules for eating to feel good in spite of my fibromyalgia:

1. Every time I eat, I eat protein. I build every meal around it. If I am going to eat, I eat at least 6 grams of protein along with whatever else I eat.

2. Avoid sugar and sugar substitutes. If I find that my will power is weak and I decide to eat sugar in spite of the rule, I’ll lessen the impact by eating only the real stuff in the evening with at least 6 grams of protein.

3. Avoid chemicals and additives. The best way to avoid chemicals is to eat whole foods. Eat apples, potatoes, beef, eggs, carrots, barley, etc. Avoid box cereal, hamburger helper, fruit roll ups and everything “processed.” Avoid anything with an ingredient list where you don’t know what one of the ingredients is (for me that eliminates most things with an ingredient list)

4. Use caffeine and alcohol in moderation, if at all.

5. Eat one serving of yogurt (with live, active cultures) every day.

I’ve found many people are not willing to make the huge lifestyle change to eat differently. I believe that if you try it, you’ll experience a real difference.

You can prove to yourself whether what you eat does or does not make a difference. And if food can control your pain level, don’t you want to control your food?

Is Fibromyalgia my enemy?

2010-06-19T08:03:00.000-07:00

I’ve spent many years trying to have a better attitude, think positively, and maintain good feelings about others. Often when I write about fibromyalgia, I refer to “the war,” “the fight” or the strategies of “the enemy.” But my inner voice wants to know, “Is fibromyalgia really my enemy? Wouldn’t it be better to put a different spin on it?”

In my early years with fibromyalgia, I experienced a lot of anger toward my situation and the voice inside my head would sometimes chastise me for feeling that way.

You have heard it said that you should, “love your enemies.” But fibromyalgia is not a living being. You and I are under no moral obligation to love this particular enemy.

Yes, fibromyalgia is my enemy, but it isn’t intelligent. It follows prescribed methods just like gravity. If I drop a ball, gravity pulls it to the ground. If I try to sleep sitting up in a chair, fibromyalgia pulls my muscles into pain.

I could be angry with gravity for making me hit the ground if I trip and lose my balance, but there is no motive or malice on the part of gravity. Fibromyalgia is like that too. Whatever I might feel, my enemy has no emotions or intentions whatsoever.

Because my enemy is not a living being, I can badmouth it all I want. I can hate it or be angry with it if I choose, without committing any moral misstep. But if I choose to feel all these negative emotions, the feelings can actually do me damage. Stress and intensely negative feelings will actually increase my physical pain. So even though I’ve chosen to call fibromyalgia my enemy, I am careful about indulging in bad feelings about it.

I’m engaged in a war. I didn’t start it, and there is no end in sight. Because my enemy has no spirit, there can be no turning things around and making friends. My enemy will remain my enemy always unless someday it withdraws (and then it will simply be my former enemy).

Wars are easier when you understand your enemy and can predict their next move. Here are some of the characteristics of my war–

My enemy’s weapon is pain.
The weapon becomes more powerful when I direct anger and frustration at my foe.
The weapon becomes weaker when I take meticulous care of my health and well-being
The war will continue tomorrow. The enemy is always on the outskirts of my life. Whatever methods I use for today’s battle, the war will continue tomorrow. All of my weapons are temporary. The stretching I do today, helps today. The pills I take today, help me today. The chemicals I avoid & the nutritious things I eat only last until the next chemical exposure or the next meal.
My enemy’s weapon is temporary too. The pain level changes. If I eat better tomorrow, stretch, avoid chemicals, and relax, chances are good I will feel better.
Without a miracle, neither of us will ever “win the war.” In other words, fibromyalgia won’t kill me, but I won’t ever get rid of it either.

My own choice of weapons gets better when I keep these things in mind

The enemy can’t think or plan. The path my enemy follows is like the behavior of gravity. If I can figure out the behavior, I can win many battles.
Some strategies have undesirable ramifications. Since all “wins” are temporary, they aren’t worth great sacrifices. For me, this means that when I consider taking any new drug, I need to consider whether I’m willing to take it for the rest of my life. If it will only help while I take it and I’m not going to take it forever, should I take it at all? I need to ask what the side-effects are, and carefully consider the consequences.

Perhaps you have a different perspective on fibromyalgia. If so, I’d love to hear it. I know that I can learn a great deal from both my friends and my enemy. I am becoming stronger and better because I’ve fought this war. If you find yourself engaged in this same kind of struggle, I hope that you can gain something positive from it.

Temporary Treatments, Perpetual Health

2010-04-04T08:09:00.001-07:00

After the last couple of posts, I’ve been doing a great deal of thinking about how all of the treatments for fibromyalgia are “temporary.”

What I do or experience today has costs or benefits today. This is true for the drugs I take, the exercise I get, the stress I experience or avoid, the chemicals I am exposed to or elude, the massage or physical therapy I receive, the sleep I get or fail to get, and the food I eat.

At first, this seemed really depressing. I need to “treat” my fibromyalgia every day in order to have any benefit. The treatments are all temporary, and the relief is temporary.

But then I started to think about the nature of my life.

Eating is temporary. There is no “cure” for hunger. I eat today, and tomorrow I am hungry again. I am just as hungry & maybe more so.

Drinking is temporary. Even if I swallow all of the water I can possibly ingest, it wouldn't be many days before I would die of thirst if I don’t drink again.

Sleeping is temporary. There is no way to avoid that either. I sleep tonight and by the end of tomorrow, I need to sleep again.

Breathing is even more temporary. How long can I go without breathing? I can’t even go one hour without breathing.

So in a way, eating, drinking, sleeping, and breathing are all “temporary treatments" for keeping us alive. There is no "permanent cure” for sustaining our lives.

If you keep on breathing every minute, the air in your lungs is temporary, but it is also continuous. Because you breathe perpetually, you will never asphyxiate.

If you keep on treating your fibromyalgia every day, your health will also be perpetual.

Treating our fibromyalgia can become as habitual as anything else we regularly do to keep ourselves healthy and alive. Our regimen will be more extensive and require greater discipline than those whom we think of as “normal,” but we can attain an acceptable quality of life.

Rejoice in the day. Be happy that there are things you can choice to do that will make your pain subside. If you live in the present and make positive choices now, your future is bright.

2010-03-21T12:59:00.000-07:00

Antibiotic Therapy

An anonymous comment on my last blog post referred me to http://www.roadback.org/ for information about antibiotic therapy for autoimmune diseases.

Here are some of my impressions after looking at the website:

The general website appears to give very helpful information for those whose particular problems are related to rheumatoid arthritis and scleroderma. If I had either of those problems, I would most certainly try this therapy.
I counted the diseases on all of the patient testimonials back to 2002. I only found two that were classified as “fibromyalgia” and both cases were young teen females.
The site's educational article on Fibromyalgia is titled “Fibromyalgia- is there an infectious connection?” It poses the question, but it doesn’t answer it. www.roadback.org/index.cfm/fuseaction/studies.display/display_id/135.html

The web site says: “This therapy is not a cure; it is, however, a highly effective treatment.” My translation is, “Just like every other thing you do for your fibromyalgia from taking hot morning showers to swallowing any other medication, it lasts temporarily and does not cause you to get over your fibromyalgia.”

Further searches on the web revealed that “Drugs known to exacerbate lupus or increase the risk of allergic reactions in people with lupus, include some antibiotics (sulfa, tetracycline).” There were also a couple of speculative articles about the possibility that antibiotics had actually caused lupus in some cases.

So, the bottom line is that the road back website doesn’t even claim that antibiotics are the cure for fibromyalgia. It might be a valid treatment. I certainly can’t pronounce any real judgment on it without trying it.

However, based on my research I have decided not to try it.

My ability to cope with fibromyalgia is based on lifestyle choices that “line up” with each other. The pieces of my lifestyle are all pulling my health in the same direction, like the draw of a compass needle. Taking long-term antibiotics would run counter to the flow. Antibiotics could kill off all the good bacteria in my body and allow yeast to flourish.

I’m doing well with my lifestyle approach. For my situation, antibiotic therapy seems like a real risk for not much chance of gain.

Whatever therapy you consider for treating your fibromyalgia, I hope that you research it carefully and make the decisions that are best for you.

Will I ever get over fibromyalgia?

2010-02-19T07:59:00.000-08:00

Everyone who is given the diagnosis “fibromyalgia” wants to know, “Is it curable? Will I ever get over it?”

In the beginning, I saw a rheumatologist who told me that I didn’t necessarily have fibromyalgia. The onset of my pain occurred many months after a car accident, and so he thought it possible that I had “post-traumatic myofascial pain syndrome.” He recommended physical therapy and said there was a chance it would make me well. If not, my condition would probably “turn into” fibromyalgia. Looking back, I think he gave me that diagnosis to keep me hopeful. I don’t think there was much difference in his mind between fibromyalgia and myofascial pain (expect that people more often recover completely from post-traumatic pain). I think he believed that if I were going to have a chance of getting better, I would need hope. The physical therapy helped with the pain temporarily, but it didn’t make me well. Still, I continue to hope.

The same rheumatologist told me that sometimes we can “get used to” pain. He said “At first it is difficult to bear, but after awhile we just go on about our routine and if we don’t focus on it, it doesn’t bother us much.” I remember thinking that the level of pain I was in at that time would always be unbearable. I knew what he meant because small pains like a paper cut or a slight headache can be ignored. But I knew with all my heart that the severity of the pain I felt at that time could never be ignored.

Prior to the pain and the diagnosis, I drank about six cups of coffee a day, I ate whatever I wanted, I didn’t pay attention to how much sleep I got, and I drank alcohol in occasional binge amounts. I did what I wanted, and all of my negative behavior never affected how I felt. But now that I have fibromyalgia, unless I experience a miracle or someone discovers a cure, I will never again be living that kind of lifestyle and be free of pain.

Fibromyalgia is not black and white. It is shades of gray which vary from day to day, and year to year. It is a little like the 1 – 10 question they ask you in the medical facilities in the United States. How bad is your pain on a scale of 1 to 10? Think of 1 as being very mild pain, and 10 being the worst pain you have ever experienced. Today my pain is a 2, but fifteen years ago when I had the conversation with the rheumatologist, it was a 9.

In the early years after being diagnosed, I didn’t understand the huge difference that lifestyle can make. It didn’t seem like anything I did made a difference. It seemed like the fibromyalgia pain came and went on its own time schedule. I suffered a lot during those years.

Today I know that how I live makes a huge difference. I can influence whether my pain is going to be a 9 or a 2. I can make the difference. I can live well with a pain level of 2. I can continue to work full time and live a full life.

But will I ever get over my fibromyalgia?

I am allergic to cats. Will I ever get over my allergy? I admit that it is possible. There is always hope. How should I proceed then? Should I buy a cat and hope that it doesn’t kill me? Wouldn’t it be better to avoid cats altogether. If I avoid cats, I won’t suffer from this allergy. I won’t be aware of it at all unless I am around cats. So even though I might never get over my allergy to cats, it is possible to live without any allergy symptoms.

But will I ever get over my fibromyalgia? Do you believe in miracles? I do, and therefore yes, I could get over my fibromyalgia. And yes, you could get over yours. There will always be hope.

While I pray for the miracle that will free us all, I will continue to do the things that decrease my symptoms. Taking guaifensen and following good lifestyle behaviors have brought me to the point where my pain is so mild that most of the time I can actually forgot about it. I have some pain-free days. Most of the time, my pain is very mild.

My advice to you is to do everything you can to keep yourself as healthy as possible. Sleep well, make good choices about what you eat, avoid everything that causes you discomfort, stretch your muscles daily, keep your stress level low, and don’t lose hope.

My advice is to you is to hope and believe that you will someday be free of fibromyalgia, but make all of your lifestyle decisions as if you will have it forever.

My lifestyle list - The things that make me feel better, worse

2010-01-30T06:35:00.000-08:00

Things that make me feel better -
• Eating protein with every meal
• Avoiding sweets, aspartame, and airborne chemicals
• Getting enough sleep
• Taking guaifenisen
• Stretching every day
• Moderate exercise
• Taking flexeril when necessary

Things that make me feel worse –
• Stress
• Eating sweets
• Eating aspartame
• Being around airborne chemicals
• Not stretching every day
• Not getting enough sleep
• Wearing uncomfortable or too-tight clothing
• Not getting enough exercise
• Getting too much exercise
• Catching a cold, flu or other virus

The Doctors' Way

2010-01-21T16:25:00.000-08:00

"The... patient should be made to understand that he or she must take charge of his own life. Don't take your body to the doctor as if he were a repair shop."
— Quentin Regestein: Psychiatrist and associate professor

I’m not going to put all doctors into the same category to either praise or criticize them. But when you interact with doctors you find out that a good majority of them were taught a certain “way” and they follow it to the letter.

“The doctors’ way” consists of measuring and documenting objective conditions, also commonly referred to as doing “medical tests.” Doctors want to know your temperature, blood pressure, cholesterol level, red and white blood cell count, etc. They send you to places to have your blood drawn, your chest x-rayed, and your breasts flattened & photographed. The whole point of all this is to determine if the test results are “normal” or “abnormal.” And if they are abnormal, the point is to determine whether the abnormalities point to a certain “diagnosis.”

“The “doctors’ way” is to test you & diagnose you, at which point they will usually declare one of three things, either you are well, you need drugs, or you need surgery.

With fibromyalgia, all of the tests come back normal. A little detour here – If you have been diagnosed with fibromyalgia and any of your tests are abnormal (unless you have something else along with the fibro which accounts for the abnormal tests), push for a different diagnosis. See a different doctor.

For some doctors, diagnosing fibromyalgia takes them out of their comfort zone. There are a ton of subjective abnormalities such as the patient complaining about pain, but there are little or no objective abnormalities that can be measured. All their tests seem to reveal to them that the patient is well.

So the first problem with “the doctors’ way” is that it can not determine if a fibromyalgia patient under their care is getting better or worse (or if they are even sick in the first place).

The second problem with “the doctors’ way” is that it sometimes fails to provide the patient with the best alternative.

This second problem was brought home to me when I developed little hive-like bumps from the bottom of my chin to my toes. I itched like someone who had been rolling in poison ivy. I covered myself with anti-itch cream and made an appointment with a doctor. My regular doctor was booked up so I agreed to see someone unknown to me from the same clinic. She diagnosed me pretty quickly as having “an allergy.” She pronounced the cure to be “prednisone.” I’m sure I surprised her when I asked if there was another alternative. Being a fibromyalgia patient and sensitive to chemicals, I’m dreadfully hesitant about taking new drugs, especially something as potent as prednisone. She declared “Well, you could figure out what you are allergic to and eliminate it.” We then established that I had changed nothing in my life but that sometimes people become allergic to things suddenly for no apparent reason. She said, “It is probably your clothes or your laundry detergent since you don’t have any bumps above the line of your clothing.” I changed my clothes to 100% cotton and my laundry detergent to “Planet,” which is hypo-allergenic (it also turns out that it is unscented and friendly to the environment). www.planetinc.com My bumps went away and have not returned.

In hindsight, being the intelligent person that I am, I should have been able to figure out that I must be allergic to either my clothes or my detergent, but I didn’t. I needed the doctor to observe that “the bumps ended at the line of my clothing,” but I really didn’t need the doctor to prescribe prednisone. Now prednisone can be the perfect solution (and sometimes the only solution) in some cases and I don’t mean to imply otherwise. Still, if I had simply accepted the first words out of her mouth, I might still be wearing the wrong materials, washing them in the wrong products, and taking prednisone with no hope of ever being able to stop.

Doctors can sometimes provide wonderful, almost miraculous solutions to problems that we can’t solve ourselves. But I wonder if they too often prescribe drugs instead of addressing lifestyle issues. Would your doctor tell you that what you need is to stop smoking, stop drinking, loose weight, eat more healthy foods, dispose or your cat, or change your laundry detergent? If those things don’t come easily, maybe you want to ask some questions before you accept the next prescription. Sometimes prescriptions are necessary and sometimes there really are more desirable solutions.

Be your own best friend

2009-12-05T07:32:00.000-08:00

If you have fibromyalgia there will be times when you need to focus on your own needs first.

Think of the advice that you are given when you board a plane, “In the case of a lack of cabin pressure, an oxygen mask will drop. Secure your own mask first before helping a child or another passenger with theirs.” There is a very good reason for that advice. If you don’t follow it, you could pass out from lack of oxygen before anyone’s mask is on. You need to keep your own oxygen supply flowing in order to be of use to yourself and others.

If you are battling fibromyalgia, you need to keep yourself as well as possible for your own sake as well as for the sake of others.

Don’t let anyone convince you to eat poorly, skip sleep, or anything else that threatens your well being.

If someone insists that the reason you feel poorly is because you haven’t had enough exercise, don’t argue with them. When they preach their philosophy of more is always better, don’t make it your mission to convince them that moderation is the best for you. Don’t let them bully you into doing more than you know is wise. Be very nice about it. Listen to their reasoning and smile. Then quit when you know that you have reached your upper limit of exertion.

When my big brother visited and wanted me to join him in a NASCAR simulator, I really wished the prospect excited me like it would have before I had fibromyalgia. I could have said, “Do you have any idea what all that jarring around would do to my body? I’m not even going to mention the fallout from the stress if it is the slightest bit scary or even just exhilarating.” Instead, I just smiled and said “Go ahead, I’d rather watch you.” Later he actually mentioned that he understood me turning it down, since I had fibromyalgia. I am always surprised, even overjoyed, when I find that someone has actually listened to me and is aware of what I’m going through.

Be your own best friend. Look out for and defend yourself. Nobody else needs to know the reasons for your decisions. Sometimes other people will understand, but your best friend will always understand.

I’m not suggesting you clean out your bank account to buy yourself expensive jewelry. I am suggesting that you guard your own health as nobody else is capable of doing.

If you are cruising through the sky, experience trouble, and an oxygen mask drops in front of you, it is an outward sign that you need to think of your own welfare first. If you are cruising through your life, experience trouble, and fibromyalgia’s pain and symptoms drop into your body, it is an inward sign that you need to think of your own welfare first.

If you have fibromyalgia, you can no longer afford to cut any corners where your health and well being are concerned. You can benefit from being your own best friend. Care for yourself. Nurture yourself. With fibromyalgia, you need to put yourself first in order to be strong enough to also care for others.

The Truth Sounds Incredible

2009-11-14T08:08:00.000-08:00

I freely admit that I have fibromyalgia, but I don’t always offer many details to the people I see every day. It feels like I am admitting to being abducted by aliens.

I went to get my eyes checked. Years ago, they would have had me read the eye chart and given me a prescription to help me see. These days everything is so darn sophisticated. Besides the photographic map of the inside of my eyes, they have a history on me. I had to answer a questionnaire when I started with them, and they keep it updated. On my history is the fact that I have fibromyalgia.

So the optometrist looked at my history and he asked me if it is tough having fibromyalgia.

“Yep, not fun.” I told him.

That didn’t satisfy him. He kept up his questioning. “Are you in a lot of pain?”

“Not most of the time. I have it pretty well under control.”

“So you feel good?” he persisted.

“I am probably pain-free about five days out of a week.” I said.

He shifted in his chair. “So when you are in pain, is it severe?”

I wasn’t sure what he was fishing for, but it was obvious he wasn’t going to give up.

“It can be.” I answered him. “It depends on what happens to me. It is all about lifestyle. If I don’t get enough sleep, or if I eat poorly, or if I don’t exercise, then I’ll hurt.” I forgot to mention chemical sensitivities and stress. But oh well, no matter how much this eye specialist cared, I didn’t think he was going to cure my fibromyalgia.

“If I catch a cold or a virus, it sometimes triggers a muscle spasm.” I continued. “If that happens, the muscle spasm is way worse than the cold.”

His eyes got big, and he stopped asking me questions about that.

Sometimes I wish that I had been abducted by aliens instead of having fibromyalgia.

How do you deal with the questions people ask? If you are completely honest, do they react with skepticism?

To a large degree I’ve learned to live with the enigmatic physical pain that fibromyalgia brings. I haven’t come as far in knowing how to deal with the psychological ramifications. I don’t know for sure whether it is better to speak the truth with love or to tell little white lies to the curious.

I guess my point in writing this particular blog is to tell you that if you feel uncomfortable describing your fibromyalgia experience to others, you are not alone. What you experience when you have fibromyalgia is not something anyone else can truly understand without having felt it for themselves. The pain and symptoms that come and go often don’t make sense to logical people who haven’t experienced it.

Fibromyalgia may divide you in understanding from your friends and relatives, while it unites you in understanding with strangers who suffer the same.

Expect Frustration

2009-11-08T06:26:00.000-08:00

The last few days my neck and my left arm are making me aware that fibromyalgia is still very capable of making me suffer. It feels like some muscle, tendon, or ligament has suddenly become shorter and is reacting with pain whenever I overstretch it by straightening my arm.

Last night I woke up during the night feeling the pain in my arm. I realized that I was lying on that side with my arm bent at the elbow and my hand under my pillow. “Oh, I get it” I thought to myself. “I am bending it in some unnatural way and straining it while I sleep.”

I rolled over onto my other side and tried to get back to sleep. All I could think about was how annoyingly delicate my body is. Any little “wrong position” creates such major havoc.

In the middle of the night of not sleeping, I try to distract myself. I kick my imagination into high gear. I think of one of my favorite fairy tales, “The Princess and the Pea.”

It seems a certain princess could only sleep on a 100% comfortable surface. To test her, they put a single pea under ten mattresses and asked her the next day how she slept. “Not well at all” she responded. “Some small lump kept me awake all through the night.” According to the story, her reply proved she was a real princess.

According to fairy tales, princes are handsome, strong, and brave; while real princesses are beautiful, intolerant fussbudgets.

In the real world, people of both sexes with fibromyalgia have a difficult time sleeping well and feeling good.

Since my imagination is already engaged, I envision myself approaching whoever is in charge of the real world to explain my grievances. I want to ask why I should have to endure perpetual torment. Oh sure, everyone has to suffer, I get that. Nobody gets an easy ride or a free lunch. But I want to know why I have to bear this invisible pain that will neither go away nor kill me. Is it doing me or somebody else some good? Am I becoming a person of great character and wisdom? Am I saving someone else from feeling pain? If it is all about being a princess, let me be a bag lady instead.

“I hurt” I say to the clock with its little hand on the two. “I’m very very very tired of having this crap.”

The moral of the story is that with fibromyalgia, frustration is predictable. Try to keep loved ones out of the line of fire, but give yourself permission to rant to an inanimate object like the clock in your bedroom, or someone clueless but empathetic like your four-legged friends. You might need to rant to someone who is divinely forgiving, like the higher power. Or perhaps, like me, you are lucky enough to be able to share it with people who really do understand, like the readers of your blog.

Sometimes after I’ve surrendered to my frustration, I feel like fibromyalgia has won the battle. Frustration makes me feel like I don’t have any options, so I try to remind myself that I do. I have the option to get up and take a hot bath, take an Advil, take a muscle relaxer, get up and stretch, or change my pillow to a different one.

For me, a good strategy is to anticipate my foe. I know that fibromyalgia will send frustration to the front lines of the battle. If I expect frustration, my enemy loses the opportunity for surprise. It has less chance to overwhelm and control me.

Morning comes, and the new day sometimes dissolves the pain and despair of the long night. Moods are changeable, and frustration is a mood. The sunrise and the nice weather get my attention. I do my stretches and my body responds positively. I write my blog. I focus on whatever brings joy.

Fibromyalgia is a challenging path that we didn’t choose. There is darkness and light along every path. On any journey, it is better to put your attention on the light.

If you have fibromyalgia, expect frustration. But give yourself permission to feel happy too.

Yeast Infections (Candidiasis)

2009-10-31T17:44:00.000-07:00

Candidiasis is an infection caused by a group of microscopic fungi or yeast. There are more than 20 species of Candida, the most common being Candida albicans. It is normal for these fungi to live on all surfaces of our bodies, but if they become too numerous they cause infections. Examples of such infections are vaginal yeast infections, thrush, skin and diaper rash, and nailbed infections.

Rarely, a yeast infection may spread throughout the body, and is then called systemic candidal disease or a systemic yeast infection.

The mainstream medical community used to insist that only those who had a weakened immune system because of cancer treatments, steroids, or diseases such as AIDS could have a candidal infection that would occur throughout the entire body. But, recently some medical professionals have changed their thinking to admit that “yeast infections that return may be a sign of more serious diseases such as diabetes, leukemia, or AIDS.” They also admit that in rare cases, systemic candidia does occur in people who don’t otherwise seem to be at risk for it.

I went through a time after my initial diagnosis of fibromyalgia where I alternated between yeast and bacterial infections. The frequent use of antibiotics, which are prescribed for bacterial infections, can cause candidal organisms to build up because antibiotics kill the bacteria that normally keeps yeast under control.

I also developed thrush, which is a yeast infection of the mouth. And during this same time, I developed symptoms of irritable bowel syndrome (or IBS).

If you have symptoms of a yeast infection, you should see a doctor of course. But if those symptoms seem to continue over time and are present in multiple places in your body, you might also want to make some lifestyle changes.

If you have issues with Candida my advice is to change your diet, especially if you have issues with your stomach or bowels.

Here are things you can do to help yourself heal:

• Avoid sugar.

• Eat a cup of yogurt every single day (Yogurt contains acidophilus which is the good bacteria that will rid you of yeast and keep your digestive system working well). As an alternate, you can take acidophilus supplements, but in order to be “live and active” they need to be refrigerated. At least where I live, I haven’t found any supplements for sale that have been kept refrigerated.

• Avoid antibiotics if at all possible (if you have a life-threatening illness and your doctor insists you take them, of course you should. But be aware that some doctors are quick to prescribe them. You might want to ask if they are absolutely necessary.)

• Eat only fresh fruit. When fruit begins to rot, fungus grows on it. You don’t want to add any kind of fungus to your body.

• Avoid cheese and mushrooms (Again, don’t add any kind of fungus to your body)

• Avoid alcoholic beverages

• Drink lots of liquids (Nothing beats water, and green tea is almost as good)

• Avoid artificial sweeteners (sorry, with the no sugar policy, this means absolutely no soda pop)

• Avoid chemical additives (An easy way to do this is when you shop for groceries avoid buying anything with an ingredient list. Buy things that are what they are, with nothing added, such as fresh fruits and vegetables, fresh meat, milk, nuts, & eggs. Shop around the outside of the store and avoid the inner isles.)

If you have read my previous blog, “What has made the most difference for me,” you know that I advocate the hypoglycemic diet for people with fibromyalgia. There are only a few differences you will find between the hypoglycemic diet and the diet to help eliminate Candida. People who are worried about Candida should eat a yogurt every day and they should not eat cheese and mushrooms. People with Candida should be able to tolerate whole grain products. The Hypoglycemic diet advises avoiding starches like rice & pasta, while eating bread in moderation. The two really provide very similar advice.

If you have fibromyalgia and especially if you have yeast infections along with it, your diet can make all the difference in the world. I’ve had fibromyalgia for 15 years. I was in the middle of year #6 when I started a strict diet like the one I am describing to you. Almost immediately I started having pain free days, my irritable bowel syndrome disappeared, and my yeast problems vanished. I have felt pretty good ever since.

You may not have to strictly adhere to the diet forever. If you are like me, you might need to strictly observe certain aspects (for me that means no aspartame, ever), but you might get to a point where you can “cheat” pretty liberally without it causing any problems for you. I can drink wine with my evening meals. I can even get away with eating chocolate in moderation. But in the beginning, you will need to be strict.

If you try the diet for awhile and it makes you feel better, you’ll understand why. That will cause you to listen to your body. Your body will tell you what you can get away with and what you can’t.

You might not be able achieve a total “win” against fibromyalgia, but you definitely can win where some of the symptoms are concerned. With the help of your doctor and a few lifestyle changes, the battle against yeast infections is a battle that can definitely be won.

Fear is Optional

2009-10-25T08:10:00.000-07:00

People with fibromyalgia often have experiences that are not direct symptoms of their condition, but occur because of the symptoms. Fear is like that.

Pain is usually thought of as our body signaling us that something is wrong, and our minds respond with fear by imagining all sorts of possible reasons that we hurt.

In my own case, I came to a couple of speedy illusions for my very first fibromyalgia pain. I decided that the reason why I hurt so badly from my neck to my elbow must be that a muscle or ligament was torn. A friend who massaged the area for me told me that she felt lumps in my neck. She thought I should be checked out for cancer. So I feared that my body was damaged. I didn’t have a torn muscle or cancer. The diagnosis was fibromyalgia.

Fibromyalgia is good news and bad news. The good news is that all of the tests are “normal.” You could run me through every medical test you can think of, and the results will demonstrate that I am in good shape. The bad news is pain and a myriad of other symptoms that may never permanently go away.

If you experience something new, you might need to check with a doctor, because people with fibromyalgia can get other things just like anyone else.

But if you recognize your pain as fibromyalgia, you can help yourself by reprogramming your reaction to the repetitive pain. Since pain is most often thought of to signal that something is “wrong,” the fear that accompanies it is almost automatic. You can change your reaction.

Fear can be increased though imagination. During the last 15 years, I have NOT been poisoned, had a heart attack, had tumors, an ulcer, a bowel obstruction, a dislocated shoulder, torn muscles, or cancer. I only felt like I did. I have had fibromyalgia, and I have had fear.

Fear can also be decreased by the creative use of our minds. As I think about my present and my future, I have to accept that I won’t get through the rest of my life free of pain. If I feel pain today, the chances are good that it won’t mean anything except the same old diagnosis, fibromyalgia. It won’t be a signal from my body that something new or something serious is “wrong.”

Fibromyalgia will hurt me, but it won’t damage me. I can acknowledge the pain, acknowledge the fear, and remind myself that both will pass.

If what you are feeling it is that same awful pain you have felt a hundred times before, try taking a deep breath and banishing the fear. Pain without fear is so much easier to bear.

Fibromyalgia will sometimes bring pain that is unavoidable, but fear is optional.

The Body/Mind Connection

2009-10-10T08:11:00.000-07:00

I’ve been told that if I could just have enough faith, my pain would cease to exist.

Have you ever read the scientific studies about any specific drug? One of the things they tell you is that this drug made a certain percentage of the people respond in a specific positive way compared to another (lower) percentage of the group who were taking a placebo. The group taking the placebo always has some people who respond.

Science recognizes this as “the placebo effect.” Researchers don’t compare success percentages to those who never took the drug at all. They compare them to the percentage of positive reactions achieved with a placebo.

The placebo effect proves that just thinking something is going to help does help. It is especially accepted for certain types of problems. For example, I understand that people with warts can often “believe them away.”

If I had one wish in life, it would be that I could believe my fibromyalgia away. I’d be such a happy person if I could tell you it were true. “Oh yes,” I’d love to say, “You can just believe and be pain free.”

I’ve tried having faith. I’ve tried talking to my pain and asking it to go away. I’ve tried telling myself that it will go away & believing, believing, believing. I’ve tried praying that it would go away.

It hasn’t left me.

On the other hand, if I have enough stress my pain will increase.

I’ve stayed up at night thinking about what evil could happen the next day. I’ve spent time fretting about the pain itself and what it might be a sign of. I’ve let myself become engulfed in worry.

It made me feel so much worse.

In my own personal case, mustering up faith in being pain-free has not yielded the good results that I have obtained by eating wisely, stretching, exercising, sleeping well, etc.

However, thinking positively does help. If I am stressed in my mind and tense in my body, then relaxing will reduce my pain. Thinking positively facilitates relaxation.

Mind and body are certainly connected. The fact that faith works is a truth accepted by science. Just because I can’t verify it with my own personal experience doesn’t mean that you won’t be successful in using it. My own experience does verify that people who replace stressful thoughts with positive ones will definitely decrease their physical distress.

More about Sensitivities

2009-10-03T07:50:00.000-07:00

Last week I wrote about sensitivities.

This week where I work there was a crew of workers using some sort of solvent to remove paint. I understand that they were wearing body suits and respirators while spraying some chemical at the object from which they hoped to remove the paint.

I didn’t go back to see this for myself. I was removed from their activity by at least 40 feet and several walls, but I was acutely aware of their activity and did not want to experience it any more directly.

When the first whiff of their chemical hit my nose and shot tightness through the muscles in the back of my neck, I closed doors that are usually open. As other employees went through those doors and left them open, I returned to the doors and closed them again. From the vantage point of my cubicle, I was able to see all three doors that let air in from the rest of the building. As a result of my door closing, the air stayed better than it was in the adjoining hallway.

I didn’t complain. I didn’t ask anyone to keep doors closed. In fact, in the beginning I didn’t say anything to anyone. I just keep closing the doors. More often than not, when I am suffering because of some airborne chemical, everyone else is just fine. People generally can’t understand why I would get all excited about some “odor.”

But this time was different. Later, I found out several other people were also concerned about this situation. And if they weren’t experiencing chemical sensitivity, they were at least experiencing revulsion to the foreign substance in their air. At this point I did voice my distress at the request of another employee, telling those in charge that I was the “canary in the mine” and was "falling off of my perch." After several employees complained, the project was shut down and ordered to resume after-hours when the building was empty.

Several weeks ago I wrote about Multiple Chemical Sensitivity and a gentleman from Australia furnished me with a link www.thecanaryreport.org/ which bases its name on the practice of coal mining’s early warning system for the presence of methane gas.

It seems there were problems with ventilation in the early coal mines, and gas was an ever-present problem in the mines. If there wasn’t enough oxygen in the air, the miners would die. The solution was to take canaries into the mine. The bird’s have a highly sensitive metabolism which caused them to die before the men would feel the effects. If the canary died, the men had to get out of the mine shaft.

In the past, I’ve thought of my chemical sensitivity as being unique to me, and not as alerting me to something that would harm other. I’ve tried to either leave or just endure situations where chemicals are present because I didn’t want to be viewed as a fussbudget.

The recent episode at work has changed my perspective. As I labeled myself “the canary in the mine” I realized that those birds were brought into the mine for an important reason. I realized that if I am truly the canary, I have a responsibility to speak my mind in order to spare others from harm that they might not be able to detect.

I am still working this out in my own mind. Previously, my policy has always been to keep quiet in order to prevent offending or disrupting anyone. Going forward, I will decide on a case by case basis. But chances are good that I will speak up more often. I realize I need to be careful about this. I don’t want to become like another bird, Henny Penny, who ran everywhere shouting “The sky is falling.” So when I do speak up, I will choose my words carefully.

I now see that in a certain way, my Multiple Chemical Sensitivity is a strange blessing. It has given me the ability and the opportunity to protect the health of those around me.

Sensitivities

2009-09-27T16:30:00.000-07:00

An interesting characteristic of people with fibromyalgia is that they are often bothered by a myriad of things that don’t generally bother other people, things like florescent lights, noises, chemical odors, tags in their clothing, etc.

These sensitivities relate to the five senses, which are sight, touch, hearing, taste and smell. In my own case, I’ve established in previous blogs that I am sensitive to smells such as gasoline, perfume, etc. and that I am sensitive to touch such as a seatbelt. I don’t seem to be bothered by lights or sounds. Others with fibromyalgia are. I’ve known people with fibromyalgia who are bothered by buzzing sounds and flashing lights.

Sometimes people with fibromyalgia don’t know for sure what triggers their sensitivity. One fibro-friend complains that every time she goes shopping, she experiences chest pain. She says that when she starts going through clothing on the racks the pain kicks in. Is it the motion? Is it chemicals in the clothing? We’ve never figured it out.

These days, my pain is pretty much under control, but all it takes to upset my physical well-being is a chemical floating in the air. Since that is the case, I very much avoid what I call being “a captive” anywhere. What do I mean by being a captive? I am a captive on an airplane. The seats are all assigned. If the woman sitting next to me is wearing an offensive perfume, I’ll be sick. On a plane, I’ll have to suffer the exposure for some duration of time, and I’ll be sick even after the exposure ends. Yes, I can ask to change seats. But how big is the plane and how strong is the perfume? Changing seats might not help.

You should be able to control your home environment. If the lights bother you, shut them off. If the noise of the fan bothers you, get rid of the fan.

If you work, you are pretty much a captive in that environment. Whether you can modify your environment there is questionable. Only you can decide what to do and how far to take things.

Even though many people share your diagnosis of fibromyalgia, your specific list of symptoms and sensitivities are probably fairly unique to you. You need to determine what things bother you and how to avoid them.

Just like an allergy, you need to avoid the things you are sensitive to. If you spent time exposed to those things, it is a withdrawal from your lifestyle bank account and you will experience it in your body as pain. If you avoid those things, it leaves your lifestyle bank account intact, and you will continue to feel at least as good as you did before.

The Difference

2009-09-19T06:23:00.000-07:00

What makes one doctor a miracle worker while another is unhelpful?

Do you think it is their intelligence level? Their education? Their personality? Upbringing? Character? What makes the difference?

Considering my own experience with doctors along with the second-hand role I’ve played as a mother and caregiver, I must have at least a hundred stories I could tell you. But you don’t need to hear them, because chances are good that you have a lot of your own.

I’m going to guess that you’ve been to doctors with a multitude of credentials who are very sure of themselves. I’m also going to guess that at times you’ve had to see medical personnel who were fresh out of school or who were inexperienced with your particular condition.

I have at least two stories from my own experience where a miracle worker was actually a physician’s assistant rather than a full-fledged doctor.

So what made the difference?

Let me shift gears a minute and tell you about the years I’ve worked in customer service, educating myself on what makes the difference in solving the customers’ issues. I believe that to solve a customer’s issue, a representative needs to carry it through the organization, especially if it is a large company. Increasingly, the companies’ policies are to do exactly the opposite, take the information and pass it on. Who among us has not had the experience of calling a company, being promised that something would be taken care of, and being disappointed that it wasn’t. The one sure way to solve customer’s problems is for the first person in that organization who hears about it to “own” it. If that employee needs to turn it over to accounting, they need to follow-up to see if accounting did what they promised. So, years of customer service experience have taught me that to be effective, I need to “own” the concern.

Recently I saw a poster that gave me a different perspective on owning another person’s issue. The picture showed a silver-haired gentleman with a little boy building a model sailboat. The caption said, “Love is my decision to make your problem, my problem.” The poster was probably the best definition I’ve ever seen describing love as an action.

The poster reminded me of the decision a customer service representative makes to own a customer’s issue or to make it their own problem. I had never before equated customer service with love. It is just business. It is just one stranger serving another for money. However upon a deeper examination of the subject, it does seem that humanity is all connected to each other. Jesus advised us to “love our neighbors” and even to “love our enemies.” Maybe it does take a certain amount of human compassion to serve others, even if that is your job.

But let’s return to thinking about doctors. The two physician’s assistants I told you about earlier who worked miracles obviously cared about the patient’s difficulty. When I go to see a doctor, either for myself or with a loved one, I notice the doctor’s eyes, their posture, and their choice of words. Is it a coincidence that those who have ended up being unhelpful are rushed, abrupt, and all business? Is it a coincidence that those who have worked miracles listen and engage themselves?

Doctors are trained to stay somewhat emotionally distant from their patients. The logic is that you set yourself up for too much grief if you have a personal concern for every patient.

My father-in-law had a successful heart surgery, performed by the region’s most renowned doctor. After we knew he was doing well, I witnessed a large group of crying people comforting each other in the hospital’s family room. Later I saw the face of the surgeon while walking down the hall. I will never forget the expression on her face. How can I explain it to you? It was filled with a magnitude of sadness and personal failure. She had lost a patient in surgery. She had saved hundreds, but she lost one. I know she is smart and skilled, but I believe I know the true reason why she is so successful and famous in our area. I saw it on her face that day in the hallway.

It is my belief that the difference in doctors is whether they take on your problem as their problem. And it isn’t only the difference in the medical field. It makes the difference in customer service, in mechanics, in appliance repair, and in a thousand other “jobs.”

Many paths that come together

2009-09-05T16:59:00.000-07:00

Let me review what you can do to relieve your pain.

You can make your own decisions. You can decide to actively alter your lifestyle in ways that make you feel better. You can sleep better, stretch daily, exercise sensibly, avoid your sensitivities, move ergonomically, and reduce stress. You can take guaifensen and follow a hypoglycemic diet.

Does this sound like a lot of different actions to get your behavior around?

The reality is that if you start firmly down one of these paths, it will meet up with another, perhaps several others.

If you embark on the hypoglycemic diet, you will most likely avoid chemical additives that you might be sensitive to.

If you stretch and exercise, you will sleep better and reduce stress.

Because I follow the guifenesen protocol, which includes the avoidance of sayacilates, I automatically eliminate a lot of sensitivities from my skin care regimen.

The lifestyle choices are compatible with each other, and they get easier as you practice them.

When you make conscious choices about how you live, your pain will subside. It is a lot like making deposits into a bank account. If circumstances suddenly demand that you make a withdrawal, you might have a big enough balance that you are able to weather it without pain.

Loved ones who don’t understand

2009-08-29T08:23:00.000-07:00

As physically painful as fibromyalgia is, there is also great emotional pain that comes to those with the diagnosis.

I heard a moving story told by a young woman who spoke of her family. After she was diagnosed with fibromyalgia, many of her family members started to compare her to her aunt, who was considered a relentless hypochondriac. They would say things like, “You are starting to sound just like Aunt Hazel, always complaining about pains that we all know are just imaginary.” As I heard the story, I remember thinking, “How unfair of them to compare the young woman to her aunt. Fibromyalgia is a real condition; it isn’t imagined like her aunt’s pain was.” But the young woman had both heart and understanding that exceeded my own. She went on to say that the words of her relatives led her to suspect that her aunt probably had fibromyalgia, but that she was just never diagnosed. “Poor Aunt Hazel” she said. “She hurt so much and nobody believed her.”

I’ve also experienced the disbelief from others about my pain, and I’m sure that you have too. It is easier to take when it comes from strangers or casual acquaintances. It is more challenging when it comes from those closest to you. After all, you expect the people closest to you to know you. They should know you are honest, and they should know you are not crazy.

I have a very good friend whom I’ve known since childhood. She knows more about me than almost anyone alive. Through the years I’ve shared all the elation and heartaches of life’s ever-changing kaleidoscope with her. And for the past 15 years, I’ve talked with her about the difficulty and pain of having fibromyalgia. Still, she sometimes says things that cause me to realize that she doesn’t get it. We’ll be talking about someone we know who is experiencing migraine headaches and she will say, “I feel so bad for Mary. You and I just can’t imagine what it is like for her, being in pain all the time.” I feel bad for Mary too. Migraine headaches certainly can’t be any picnic in the park. But this is one of my very best friends, telling me that I can’t image being in pain all the time. Her words bring me emotional pain. I don’t correct her, but it brings the knowledge that in some ways I share more understanding with strangers who have fibromyalgia than I do with this very good friend.

If relatives and friends can be hurtful, spouses can be the most precarious relationship of all. Unfortunately, how you feel affects how you behave and what you are able to accomplish. Having fibromyalgia literally and directly affects your spouse. If that person doubts your pain, it is difficult to cope. My own spouse reacted to my initial symptoms and diagnosis by feeling “cheated” that the woman he married had become someone who could no longer enjoy the previous active lifestyle we had shared. Through the years he has come to accept my pain and limitations, but if I ever bring up the word, “fibromyalgia” in conversation, his response is, “You don’t have fibromyalgia.” I’ve had to accept his denial because he refuses to accept my diagnosis. The years have passed, and I feel much better these days. His reaction is better too. He watches to make sure that I take my guaifenesin. When he sees that I hurt, he suggests constructive things like; “take a hot shower, stretch, or take a “fix-er-pill” before bed” (He is referring to Flexeril).

Recently, my elderly mother has been ill. The road to a diagnosis has been filled with frustration. She experienced pain that moved around from jaw to elbow to knee to hip within days or weeks, along with being extremely fatigued, losing her appetite, and losing an alarming amount of weight. For awhile, I wondered if she had fibromyalgia. It now appears that she does not. I think we have her correct diagnosis, and she is on her way to feeling much better. However, after several weeks of hearing about a pain in her jaw today that disappeared and was replaced by a pain in her elbow, knee or hip, I started to doubt her. My own mother, whom I have known forever, I doubted. She has always been honest & never been prone to imagining pains. But my mind kept saying things to me like, “people change and the elderly do get dementia.” Thank goodness I stayed by her side on the difficult journey to her diagnosis in spite of having some doubts. The experience did teach me how truly challenging it is to believe those of us with fibromyalgia. We look well. As much as they want to, others just can’t see or feel our pain.

When I was in my early 20’s I rented from a woman whose history I hear about through a coworker who had dated her son. I learned that her wonderful husband had been the innocent victim of a car accident and died at a young age. While I rented from her she was living with an abusive alcoholic and seemed very unhappy. One day as I came through the common entry that served as an exit for both my apartment and her main living quarters, she was scrubbing the floor. I made a comment about it being a nice day, and she said she didn’t see anything nice about it. I tried to make cheery conversation, and I will forever remember what she finally said to me, “I’ll never forgive my husband for leaving me.” I was shocked. I said, “But someone told me that he died in a car accident.” She answered, “It doesn’t matter.” That day I learned that sometimes people hold grudges against others for things that are truly not their fault, and I realized how poisoned a person makes their own life through their lack of forgiveness.

I wish I could give you some magic that would allow others to “know” how your body feels. That magic doesn’t exist. What does exist is forgiveness. Your first priority is to take care of yourself, and that includes keeping your stress level as low as possible. Anger, hatred, and frustration can translate from your emotions to become pain in your body. Forgiving my best friend for not remembering my pain is healing to me. Forgiving my spouse for feeling cheated and for his denial of my diagnosis is healing to me. I gain nothing in my relationships or in my wellbeing by holding negative feelings. Also, forgiveness begets forgiveness. It might start up the forces that will allow others to forgive you for being sick. No, it isn’t your fault, but like the lady who couldn’t forgive her husband for his accidental death, others might harbor some resentment about your fibromyalgia. You might even need to forgive yourself. Again, it isn’t your fault, but that “doesn’t matter.” Forgiveness isn’t a magic cure, but it is very constructive action.

Products I Endorse

2009-08-23T10:25:00.000-07:00

You might have noticed that I don’t have advertising on my blog. That is on purpose. I don’t want to steer anyone astray. There are many “snake oil vendors” who will promise you an instant cure in exchange for your money. The last thing I want to do is direct anyone with genuine pain to a source that will either harm you or take your money and provide nothing of value in return.

There are things that have helped me that I am willing to share. The vendors of these products don’t know me and would be surprised to find that I endorse them.

First on the list is Fibro Pharmacy web site, https://www.fibropharmacy.com/ If you decide to follow the guaifenesin protocol, as I have, this site will be the answer to your prayers. The site mostly sells products that are free of Salicylates. Those that do contain them are clearly marked as such. This site also sells products that are intended to help those with fibromyalgia but have chosen not to take guaifenesin. Their prices are reasonable, their service is quick, and their packaging is minimal. I only have positive things to say about them!

Products sold by the Fibro Pharmacy that I like (free of Salicylates) include Johnson’s baby shampoo, Aveeno daily moisturizing lotion, Dry Idea unscented clear gel anti-perspirant, and Free & Clear shampoo and conditioner.

As far as soap is concerned, there is nothing better on the planet than pure glycerin soap without any die or perfume added. I get mine from Hobby Lobby. It is made by “Something Fabulous” and is intended for melting down and adding scent or coloring to “make your own soap.” It is already the best soap for someone with sensitive skin and multiple chemical sensitivities, plus it doesn’t contain Salicylates. In my mind, adding anything to it would only make it less desirable. I use it as is & truly love it.

Last winter I suddenly developed a case of itchy bumps from the bottom of my neck to my toes. The doctor said I must be allergic to my clothes or laundry detergent. Since then, I use “Planet” powdered laundry detergent. It is environmentally friendly, gets my clothes clean, and has no odors that bother my chemical sensitivities. I also started wearing only 100% cotton clothing as much as possible. In the winter, it is cold enough so that I need to wear a layer of something under my clothing to stay warm. “Hanna Anderson” http://www.hannaandersson.com/ sells awesome long johns for adults made from 100% cotton. Some of the patterns are kind of bold, but nobody sees them anyway. The also sell wonderful clothes for children, which is really their main focus.

Finding great products is harder when you are chemically sensitive and have fibromyalgia. I hope that some of these suggestions are helpful to you.

Don't Give Up

2009-08-19T16:10:00.000-07:00

When I was a child, my big brother was merciless when it came to teasing and hurting me. While we were standing facing each other, he would lace all of his fingers into mine and then apply enough pressure to bring me to my knees. He loved to hear me say “Uncle.” I tried hard to be strong and endure whatever he dished out, but I’d always give in. When I said “Uncle,” he would stop.

In the present, fibromyalgia is merciless. It applies enough pain to make me say “Uncle.” But where this oppressor is concerned, giving up does not mean freedom. Giving in does not bring relief.

You are almost certain to have days (maybe even weeks) when you feel like your fibromyalgia is an invincible foe. You try a few lifestyle changes and occasionally you feel a little better. But you also feel pain that you can’t equate to anything you did or failed to do.

Is this frustrating? Completely. Fibromyalgia goes against every “happily ever after” ending in every storybook I’ve ever read.

You might question whether anything you do has any effect. I believe that if you make the lifestyle changes I am recommending, you will experience for yourself that it does.

Fibromyalgia is very unfair. You don’t deserve the pain you feel. And I mean that with all my heart. You don’t deserve that pain.

Giving up is not an option. The unpleasant truth is that relief won’t come from giving up. Relief will only come from making wise lifestyle decisions, and carrying them out.

And if you make all these lifestyle changes, will you be pain free? Maybe, and maybe not.

I can tell you that when I follow the things that I am advising you to do, my pain is reduced to a minor annoyance most of the time. I might have six pain-free days in a row and on the seventh I’ll have the kind of pain that makes me take a couple of Advil.

However, if I catch a cold, it might morph into a bad cold with a muscle spasm in my back. If so, I’ll suffer much more from the muscle spasm than the cold.

If I fall and hurt myself, if I am in a car accident, if someone I love dies, or if I have to survive on very little sleep to care for someone else who is sick, it can bring on fibromyalgia pain.

You might find that the world is just loaded with circumstances that threaten your well-being. Stay the course with good lifestyle choices, and you’ll be ready for those circumstances. You will feel very much better than you otherwise would.

Multiple Chemical Sensitivity

2009-08-09T08:26:00.000-07:00

Fibromyalgia has a lot of “symptoms” that apply to some but not all of its victims. Multiple Chemical Sensitivity (MCS) is something that I face, but not everyone with fibromyalgia does.

Here is a website about MCS: http://www.thecanaryreport.org/ (Note: My original link was to a different website, but thanks to Harry Clark, who commented on my choice, I have changed it. Thank you Harry, for a better site to reference.)

I am sensitive to the following airborne chemicals: the scent of plastics (think new plastic shower curtain), almost all perfumes & fragrances, gasoline, new car smell or newly constructed building odors (perhaps glue or paint?).

I am sensitive to Aspartame (commonly known as Nutrasweet), Acesulfame K, Saccharin, and Sucralose (commonly known as Splenda). I also react to certain packaged foods without knowing exactly why. For example, a drop of soy sauce will give me a severe headache. Is it the high sodium level? Nothing else with high sodium seems to bother me. Is it the caramel color? I just don’t know, but I avoid it.

Avoiding what I am sensitive to is the key to feeling good.

I avoid Aspartame religiously. It angers me that I have to buy “retro” gum like “Black Jack” or “Clove” from some specialty store in order to avoid Aspartame. Look at the ingredients for yourself as you are standing in line at the grocery store checkout. Every modern brand of gum contains it. About 95% of the so-called “breath fresheners” also contain NutraSweet.

How much sugar could the manufacturers pack into a stick of gum if they were trying to make me fat? Seriously, who chews that much gum? Do they really need to use a sugar substitute? Perhaps it is less expensive. Heck, I’d pay three times as much for gum with sugar.

Here is a great website that talks about the evils of Aspartame: http://www.sweetpoison.com/

Dr. Janet Hull indicates on her web site that Aspartame causes a number of ailments, fibromyalgia among them. At one point she asks the question, “Ever gone to the doctor with real, physical symptoms, but he/she can’t find the cause? Well, it’s probably your diet, your environment, or both.” Hmmmmmmm

Back in the late 80’s and early 90’s, I drank diet cola like there was no tomorrow. Would I have fibromyalgia today if I had not done that? I don’t know. I do know that today I am very careful about what I eat and drink.

There was a time when I believed that the Food and Drug Administration existed to protect people from ingesting things that might be harmful. In today’s world of artificial sweeteners and fats, chemical additives, and genetically altered crops, I choose to own that responsibility myself.

What is my advice to you? Pay attention to what you eat, drink, breath, and put on your skin. Be aware of what you are doing and how you feel afterwards. For anyone with sensitivities, It matters.

Reduce Stress

2009-08-01T06:08:00.000-07:00

I used to wonder how a person could reduce their stress. It seemed easier to talk about than to actually find any actionable stress reducers. That was back when I would drink ten cups of coffee during my work day regardless of what happened either inside or out. The reaction wasn’t severe enough to stop me.

Fibromyalgia has made me acutely aware of actionable items to reduce stress. Right at the top of the list is, “quit my job.” That would surely reduce stress. Is it a viable option? It probably is not. So instead I need to find alternatives. I stopped drinking coffee. Caffeine can be a source of aggravation for the pain of fibromyalgia and it increases the effects of stress, so it makes sense to stop.

Some behaviors are inherently stressful. Things like driving in heavy traffic and public speaking are examples. It doesn’t really take a rocket scientist to identify things that cause stress.

What can you do to eliminate your involvement in stressful situations? You can say no.

You can tell your boss that you won’t give a presentation to 250 people at the annual meeting. You can tell your spouse that you don’t want to go skiing. If you have severe pain, you might even need to tell your best friend that you won’t go to the movies.

Yes, I am listing positive things as stressful, like skiing and the movies. Positive stress is just as pain-producing as negative stress. Your body is going to respond negatively even if your mind and heart respond positively. When your husband walks your daughter down the isle of the church, it might be the happiest day of your life….or at least it could be if your fibromyalgia is not in a state of flare.

Why do you always experience a flare at the worst times? Why do you feel worse physically when you are traveling for your vacation or attending a big party? The answer is stress.

I’m sure it isn’t news to you that fibromyalgia is not fun, but perhaps it is news that having fun can be a pain trigger. This is because there is often what is ordinarily considered a “good stress” associated with having fun.

In my early years of having this affliction, I started making “tentative plans” with my friends. Instead of committing to going shopping on Saturday, I would tell them that I would go “if I felt good.” I never knew how I would feel from day to day. It either had to be “no” or “only if I feel good.” My truest friends tolerated it, and things have gotten better for me. These days, I feel good enough to commit. However, I still avoid winning a trip to Hawaii or Europe. Oh yes, I’d love to see those places, but I understand what my real choices are. Visit Hawaii while feeling intense pain (before, during and after), or stay home and feel pretty good. For me, feeling pretty good outweighs most enticements.

If you have never considered that having fibromyalgia might clip your wings, and the thought is making you depressed, remember that lifestyle is like a bank account. You have choices. If you make enough deposits through right lifestyle choices, you can probably take that trip to Hawaii. If you are willing to pay the price, you can do anything your sisters can do. I should never eat another bite of chocolate, but I’m going to eat it occasionally because living without it is too much of a deprivation. You don’t need to lead a perfect life; you just need to be really mindful about choosing your poison.

Stress will usually increase your pain. Your body won’t discriminate as to whether the stress is positive or negative. You need to acknowledge that stress is a withdrawal from the lifestyle bank account. Tranquility is a deposit.

What has helped me the most

2009-07-25T07:11:00.000-07:00

This post is dedicated to Joanna http://myfibrolife.wordpress.com/ who asked me “What has helped you the most?”

There is a book called “What Your Doctor May NOT Tell You About Fibromyalgia” by R. Paul St. Amand, M.D., and Claudia Craig Marek. A couple things from that book have helped me the most.

First, Guaifenesin is a drug that your doctor will probably not tell you about. It is still a somewhat controversial treatment for fibromyalgia. Controversial, not because of any danger or side-effects, but because many do not believe it helps with fibromyalgia. It is intended for other ailments. To the mainstream medical community, it is an expectorant and is intended to make your mucus flow. It helps loosen up your chest so you cough up mucus from your lungs. It also helps to keep your sinuses more clear. It is sold over-the-counter as “Musinex.”

If you want to know about Guaifenesin for the treatment of fibromyalgia, please get your information from the source, the writings of Dr. Paul R. St Amand. The web site is http://www.fibromyalgiatreatment.com/

My personal comments about Guaifenesin –

Don’t let yourself be overwhelmed by the advice to avoid salicylates. You need to understand the answer to the question, “What is the worse thing that will happen if I don’t avoid salicylates?” The answer is, “Nothing.” In other words, If you don’t avoid them, the drug won’t help. But it won’t hurt you either. So do your best, but don’t let it obsess you.
It is true that when you start the Guaifenesin protocol, you will feel worse before you feel better. However, I knew this when I started, and I can only really verify it looking back. On a day to day basis I’ve always felt better one day and worse on another. For me it wasn’t that dramatic. Don’t let it scare you. I've found Guaifenesin has almost no side effects.
Make sure that you take “long acting” or “time release” Guaifenesin, which means Musinex. I could digress into quite a tirade about the Adams Drug Company at this point in my writing, but I decided long ago that accepting things I am unable to change is better for my stress level, and therefore better for my Fibromyalgia. My own experience tells me that you need to have the drug in your system at a pretty constant level over time. The regular, cheaper Guaifenesin won’t do that for you.

Guaifenesin works slowly. When I started, I was told I’d feel better after taking it for about one and a half months for every year that I’d had Fibromyalgia. It works so slowly that you might question if it works at all. It works for me. I continue to take it, and there is a possibility I might continue for the rest of my life.

The one single thing that has made the most dramatic difference in my well-being is the “Hypoglycemic Diet”. Hypoglycemia is also discussed on Dr. St Amand’s web site and in the book.

The Hypoglycemic diet isn’t supposed to work all that fast either. But for me it did, and it does. I started it on January 1, 2000. I felt better immediately. I’ve been keeping to some variation of it for the last nine years.

I can’t emphasis enough that my diet is the biggest single factor in how I feel.

My personal comments about the diet –

Dr. St Amand’s advice will tell you it is ok to use sugar substitutes. I don’t! I eat sugar occasionally, but I never, ever ingest any artificial sweetener. For me, they are worse than poison. It may be because I am also chemically sensitive, and I will write about that subject on another day. You will need to decide this for yourself, but be aware that it might be a problem.
I find that I feel very much better if I eat protein at every meal. In fact, I build my diet around protein. Unfortunately, the protein in drinks and even in nuts doesn’t seem to work as well as meat and fish. I admire vegetarians, and they have a good health-record statistically. I will never be one. For me, the way to freedom from pain includes animal protein at every meal.
If you absolutely positively have to have some sugar, do it right after your last meal of the day. The sugar will have less effect if eaten with protein, and there is something about going to sleep that changes your blood-sugar reaction. There is a book about this called “Potatoes, Not Prozac.”

You might have tried diets before, perhaps to lose weight. They can be difficult to stay on. However, when you experience freedom from pain, you might be surprised how easy it is to continue. As the years have rolled by, I’ve made adjustments based on what I tolerate well and what doesn’t agree with me.

The diet, with the help of Guaifenesin, has given me back my life.

Exercise

2009-07-18T06:11:00.000-07:00

Unlike stretching, exercise is almost one of those “dammed if you do & dammed if you don’t” type of activities. Nothing else demands such a careful negotiation between “enough” and “too much.”

An average person might be able to sit on their couch and eat potato chips every weeknight, then go for a five-mile hike on the weekend. If fibromyalgia becomes a part of their life, they won’t continue to get away with that.

The keys to good exercise are consistency & slow progression. Start where you are. If you haven’t walked in months, go a quarter or half mile. Work to go greater distances gradually. Do it every day, or almost every day.

Yeah, you've heard it all before from people who have never even heard of fibromyalgia. True, but the importance of this advice is magnified for you if you are challenged by fibromyalgia.

My two favorite kinds of exercise are walking and Pilates. Walking is something everybody does. It doesn’t take any instruction or special equipment. You just do it. Pilates gives me a cardiovascular workout, strength training, and further stretching all at the same. But I still stretch beforehand.

Exercise will build you up and make you stronger. You won’t become tired as quickly, and you will have less pain. Just be sure to keep your intensity and duration between the extremes.

Stretching

2009-07-01T08:41:00.000-07:00

Stretching

One of my co-workers used to have a little Buddha-type doll on his desk. On the outside, it was covered with stretchy plastic that simulated skin. On the inside, it had some unknown material which felt like dough or silly putty. You could poke your finger into his belly and it would slowly pop out again. Over time, the inside contents of my coworker’s doll started to harden. After awhile, when someone squeezed him, he’d make a crunching sound and he wouldn’t bounce back.

As the doll lost elasticity, I remember thinking that this was how my muscles felt with fibromyalgia. They were once elastic, almost liquid in their flexibility. With the onset of fibromyalgia, they’d begun to feel like they had undergone some transformation similar to the doll.

I started stretching when I was working out in a gym, years before I had fibromyalgia. The common wisdom was to stretch before you exercised and maybe even to stretch afterwards.

The onset of fibromyalgia landed me in a physical therapist’s office, and he taught me stretches that were specific to my head, shoulders and neck area. It seems that is where all my problems started, and that is the area I have the most trouble with on an ongoing basis.

My stretching routine is a combination of the moves I learned from the physical therapist and the moves I learned in the gym.

I stretch every day, whether I do any other kind of exercise or not. It sounds so trite, I’m sure. It sounds like a commercial where they tell you that eating their brand of breakfast cereal every day can reduce your cholesterol. I’m thinking your brain has been so desensitized by the onslaught of commercials, that you are tempted to think, “Stretching, no big deal. Probably wouldn’t make much difference.”

This is your wake up call. Just as some minor little nuance of movement such as how I carry my dog’s dish can cause me considerable pain; some minor little positive motions like a stretching regimen can cause you considerable relief.

So what is stretching, exactly? Pick a muscle. Start with a leg. Sit on the floor (if you can) and bring it to its longest length and then hold it. I have a clock that makes an audible tick-tock. I count as follows, tick-tock equals one-and. So tick-tock, tick-tock equals one-and, two-and. I get into the position for the stretch without actually doing much to the muscle and count through five. I stretch out the length of the muscle and count to twenty. Then I push as far as I can and count to five. There should be no bouncing, just a steady stretch. Move to the next leg. Etc.

The whole routine only takes ten minutes. It started as stretching, and the purpose is physical, but it also seems to border on Zen. When I breathe slowly and concentrate on the counting, it relaxes & rejuvenates me. It makes my muscles feel elastic again, almost normal. If I wake up with a knot in my shoulder, often the stretching routine will banish it.

If you adopt only one item of advice from all of my writing, stretch every day.

Sleep

2009-06-21T08:33:00.001-07:00

The experts seem to agree that the lack of sleep is one of the triggers that can cause pain in people with fibromyalgia or even cause fibromyalgia itself. It is even true that if someone is systematically deprived of sleep over a long period, that individual will begin to report the symptoms associated with fibromyalgia.

The experts also seem to agree that when people with fibromyalgia do sleep that they often do not reach REM, which stands for “rapid eye movement” and is considered the deep and restorative sleep that is necessary.

There may not be much that you can do to reach REM, but you can do a great deal to increase your chances.

First, schedule enough time to sleep. Even prior to having fibromyalgia, I needed a lot of sleep. For me, at least eight hours is a necessity. Fortunately, I fall asleep easily (staying asleep is more difficult). I don’t really need to allow much time after I am actually in bed for falling asleep. Some people will need to allow that time. On work days, I generally allow myself from 8:00 p.m. to 4:30 a.m. Yes, 4:30 a.m. is a ridiculously early hour to rise and 8:00 p.m. is very early to retire. If I didn’t need the morning time prior to getting to work, it could be from 10:00 p.m. to 6:30 a.m. or 11:00 p.m. to 7:30 a.m. Those schedules sound more normal. It doesn’t matter, as long as you allow the time.

Next, do everything in your power to make yourself comfortable. For me, that means sleeping on an air bed, which is adjustable for firmness. It means sleeping with a pillow that has a cervical contour built in. If I am away from home, I roll up a hotel towel and put it under my neck with my head on the hotel pillow. It means sleeping with a pillow between my knees because I am a side sleeper and this takes strain off of my back. It means sleeping in 100% cotton pajamas.

Have you heard the story of the princess and the pea? Well, I make her look low-maintenance.

It is probably also worth mentioning that every night is not the same. Some nights I adjust my bed to be more firm and some nights I adjust it to be softer. The experts would tell me to find my ideal setting and stick with it. The bed manufacturing experts probably don’t have fibromyalgia.

I also have a Sobakawa pillow for the nights when the contour pillow is not helping. It is filled with buckwheat hulls & gives me different support.

Sometimes different is the key. Sometimes when I can’t sleep, I get out of bed and get a drink of water. It is like rebooting my brain. When I return to bed I get a fresh start on trying to sleep.

Everyone has specific requirements for the most restful experience. I have a cousin who can only sleep in a pitch-black room. If you can see so much as a shadow in the room anywhere, it is too much light for her. Some people do well with a machine that provides “white noise” such as waves hitting a shore. You probably already know some of the things that will help you to sleep, so try to incorporate them every night.

If you haven’t already discovered it, you will find that the pain and associated symptoms of fibromyalgia wax and wane. Some days you are almost pain-free. Other days you might think you’d feel better if you consented to trade bodies with a skydiver who had forgotten his chute.

There are nights when I am in so much pain that I can’t possibly sleep. Those are nights for Flexeril. I mentioned in an earlier entry that my doctor had prescribed it to be taken every night. Every night is too much. On the days when I am almost pain-free, it doesn’t make sense. It takes too much away from my energy level the next day. But having it when I really need it is important.

Do whatever you can to sleep long and sleep well.

Ergonomics

2009-06-15T14:34:00.000-07:00

Wikipedia defines ergonomics as “the scientific discipline concerned with designing according to human needs, and the profession that applies theory, principles, data and methods to design in order to optimize human well-being and overall system performance”.

Please let me redefine it for our conversation as “making adjustments in order to interact with the world’s objects in such a way that it causes you the most comfort and the least pain.”

By my definition, ergonomics is closely associated with tactile intolerance. Let me state again that what bothers one person may not bother another.

Early in my fibromyalgia experience, I was plagued by a reoccurring pain in my back on the right side, between my shoulder blade and my spine. I used to tell my husband that it felt as if someone shoved a compact disc into that space. I chose that imagery because the pain was like a knife, but less at each extension as if the offending item were curved. It was actually my husband who arrived at the reason for my pain. The cause of this particular pain was aggravated by a modern technological device that I use extensively both at home and at work, the computer mouse. My husband likes to give things cute names, and this particular area of pain in my back he dubbed my “mouse muscle.”

Ergonomics as I have defined them means stopping or minimizing movements that cause pain. In the case of my mouse, stopping use entirely is not an option. I work with a computer on my job, and my continued employment depends on it. But minimizing is quite possible. For me, that meant limiting my computer use at home. It meant learning and using keyboarding shortcuts to replace the mouse use. It meant occasionally using the mouse with my left hand instead of the right one. Am I still plagued by this pain? Well, plagued might be too strong a word. But yes, it occasionally bothers me. When it does, I go cold turkey on my computer use at home & I monitor my use of the mouse at work with the question, “how can I do this without using the mouse?”

Ergonomics as I have defined them also includes being a detective for movements that are causing you pain. I had a pain develop in my left arm that seemed to increase over time. I watched myself every day for what I did and how I did it. If I suspected something was causing the problem, I changed my approach. I came to the conclusion that it was carrying my dogs refilled water dish to the kennel in the garage every morning that caused the pain. I was carrying it one-handed with my left palm flat under the dish, the way a waiter might carry a tray of food. It left my right hand free to open the door on the way out. But that one little thing created pain for me. When I started propping open the door and carrying the dish with both hands (fingers, with no flat palm under the dish), the pain disappeared.

Now you could get the idea from reading these last two entries that fibromyalgia is just repetitive motion pain and being ultrasensitive. That isn’t correct, and I don’t think that at all. Fibromyalgia can cause you pain when you did nothing to aggravate it. It might show up somewhere that makes no sense at all based on what you come in contact with or how you move. But, fibromyalgia does also make you ultrasensitive. It does cause you to experience repetitive motion pain sooner and more severely than someone without fibromyalgia.

When you have pain, put on your detective’s hat. Ask yourself what you do with that area of your body that might cause it. Watch yourself. Keep in mind that it doesn’t have to be anything very dramatic. Carrying my dog’s water dish outside once each day certainly isn’t what we would ordinarily view as exertion.

If you identify a habitual motion that might be causing you pain, change it and see how you feel. This will likely take days of doing it differently.

Changes in how you interact with the physical world can reduce your pain. Keep watch. Think things through. Test your theories. You’ll feel better.

Tactile Intolerance

2009-06-06T07:39:00.000-07:00

Tactile intolerance is usually associated with children and often with autistic children. I stand as a witness that it can be very problematic in adults with fibromyalgia who have no prior history of it. What do I mean by tactile intolerance? My best example is the seat belt in my car. Years ago, they made them so that I could tug mine out to a certain point and it would stay there until it was tugged on again. Oh, how I long for those days. Some safety-conscious engineer-type must have decided that I needed it to stay snug against me, and so the newer model was implemented. Unfortunately, the newer model keeps on tugging the entire time I am wearing it. Yes, it is a very small tug. You wouldn’t think it would be a problem. I can stand it fine for 4 blocks, 6 blocks, a dozen. Then I start to have chest pain. No, it doesn’t just bother me, it actually causes pain. The pain increases with the amount of time that I must endure the ever-so-minor tugging. Most people feel no pain from this. They tune it out and don’t even realize it is there. I arrive at my destination feeling like I am having cardiac arrest.

People are not the same, and I am including those without fibromyalgia in that statement. For example, one of my friends (who doesn’t have fibromyalgia) has been cutting the tags out of all of her clothing for her entire life. I only started doing this in my 11th or 12th year of fibromyalgia when I suddenly became wildly sensitive. Years ago, my friend would complain that the clothing manufacturers had sewn a tag made from cat-scratch cloth on her garment, which identified the product as 100% organic cotton. I thought she was a fussbudget at the time. Now I understand. Now I complain when my 100% cotton garment has been sewn with nylon thread.

Some things that bother me may not bother you. But if you have fibromyalgia, chances are pretty good that some things will bother you.

In case you need my list in order to feel better about yours, seat-belts are at the very top. Next in line of the things that cause pain is bras. If you have this problem, try www.decentexposures.com. Order a bra made with organic cotton (which will be sewn with organic cotton thread) and Lycra ribbing instead of elastic.

For about six years I couldn’t stand anything around my waist. I quit wearing pants and only wore dresses, without panty hose. Panty hose is absolutely the worst. I could buy the largest triple-plus size they sold and the waistband would still cause my entire upper body to feel like it was cut off from the blood supply in my lower body. Once I made it all the way to an event before taking the panty hose off in the parking lot in my car before going in. The etiquette experts used to berate people for bare legs, so I wore long dresses with knee highs (don’t get me started on thigh-highs or garter belts).

These days, I can wear pants and even blue jeans, although perhaps not as tight as most ladies. Things do continually change for better or worse for those of us with these reactionary sensitivities.

Some of your symptoms might be due to tactile intolerance. In other words, some things that touch you might “bother you” or even cause you pain. These will likely be things that don’t affect other people. In fact, other people might think you are a fussbudget or worse for the things that bother you.

Living successfully with fibromyalgia means being your own best friend. Cut the tags out of your clothes if they bother you. Wear what makes you comfortable. Jerry-rig your seatbelt to tug less, if necessary. Put your jewelry away in a drawer somewhere if it bothers you to wear it. Splurge on 100% cotton socks if you need to. Tie your shoes looser, quit wearing the pony tail in your hair, and find a pair of lighter glasses if they cause you discomfort.

Pay attention to what your body is telling you. It might take some thought to realize the reason for your chest pain whenever you get in the car to go anywhere. Maybe you suspected you were agoraphobic, and it turns out that it is just the seat belt.

Take positive action with the objects that you come in contact with to decrease your discomfort and to increase your comfort.

2009-05-30T10:38:00.000-07:00

Lifestyle choices

If you have made the decision to take charge of your own care, then you are ready to understand that the most dramatic effect on your health will come from lifestyle changes. Your best hope for reducing pain and having pain-free times is to change.

During the years before I had fibromyalgia, I got away with anything where my body was concerned. I could stay out late and skip sleep, eat anything I wanted, smoke, drink alcohol to excess, not exercise…..well, you get the picture. All the experts were dishing out advice back then, just as they are today. Back then, I had no adverse effects from anything I did, at least non that were immediate or perceivable. The difference now is that most things have an immediate, perceivable effect on my well being.

This fact is like a chasm between me and everyone else. My group might be making plans to spend the night in a smoky bar, drinking until 1:00 a.m. Nobody else will wake up in excruciating pain the next day unless they drank way too much. I will, even if I didn’t have a drop of alcohol. My spouse might want me accompany him on a five mile trek through the mountains or I might have a choice to work four 10-hour days a week instead of five 8-hour days. My manager might want me to give a speech to forty people next week. Deciding to do any of these things carries a price for those with fibromyalgia that others will not be paying.

Breathing second hand smoke (or smoking yourself), getting less sleep than you need, getting a great deal more exercise in one dose than you are used to, pushing yourself beyond your endurance, and experiencing stress are all things that will make you feel worse.

The best analogy I ever heard to explain how lifestyle choices affect fibromyalgia was to compare your health to a bank account. When you eat right, sleep well, exercise wisely, and avoid pain triggers, you make deposits in your account. When you eat poorly, miss sleep, etc., you make withdrawals. If you deposit more than you withdraw, you will do better. If not, you will certainly be in pain.

The heart of my message is that you will need to change your lifestyle in order to feel better. Unfortunately, everything is more complicated with fibromyalgia. Simple advice like getting enough sleep becomes a huge challenge because we don’t tend to sleep well no matter how early we retire or how long we stay in bed.

There is a great deal of information that can help you, but the most difficult thing will be taking action on that information. I think everyone has experienced how challenging it can be to change habits. If you’ve ever tried to quit smoking, lose weight, or even just promised yourself that you’d save more money, then you know that implementing your decisions isn’t always easy.

There is some good news here. Having fibromyalgia will actually help you to make the lifestyle changes that you need to make. The reason this is true is because you will feel better (or worse) depending on your actions. People who don’t suffer from fibromyalgia don’t have the same incentive. Fibromyalgia can be a brutal disciplinarian.

Having fibromyalgia causes me to take much better care of myself than I otherwise would.

Please take good care of yourself. It will make a difference in how you feel.

Take charge of your care – Make you own decisions

2009-05-23T07:17:00.000-07:00

It took me a long time to learn that not everything handed to me or recommended to me by a doctor was in my best interests.

As an example, I was given Flexeril (cyclobenzoprin) early in my journey. It was prescribed to be taken every night before bed, and so I took it every evening. In the morning, I woke up different than on the days that I had not taken it. There was less pain, and I had slept more soundly. However, it also brought my energy level down & made me feel drugged. I made a decision to keep Flexeril around, but to only take it on days when I hurt very badly and nothing else seemed to help.

Another example deals with antibiotics. I don’t take them unless it is the only thing that will cure whatever I have. I question my doctor in depth before I let her prescribe them for me. Taking antibiotics is like requesting a yeast infection. One follows the other for me.

Some things I do might be regarded as unwise. For example, I’ve refused a mammogram for the last few years. I’ve been suffering with a couple of painful areas under my right arm for about five years. The last time I had a mammogram, those spots flared up during and afterwards to the point where I would rather die than feel that again. If you have fibromyalgia, you know I am not exaggerating. You may also have experienced the point where death seems to be a merciful alternative. So I’m taking a risk by not having a “preventative test.” Someday my pain there will end and I will get a mammogram. Until then, it is my decision, & my risk.

You need to take charge of your care because doctors are trained to follow certain paths. Those paths sometimes lead to places you are better off avoiding. The side effects of some drugs are almost worse than the ailment they are prescribed for.You need to take charge of your care because you are the only one in a position to do the things that will really make a difference for you.

Think of it like being a dog owner who has an allergy to dogs. Your doctor can prescribe drugs to treat the allergy symptoms. Doctors often do just that. The result is that you keep the dog and feel fairly allergy-free, but you are putting drugs in your body and they have side effects whether you are aware of it or not. You are the only one who can make the decision to get rid of the dog, which will eliminate both your allergy symptoms and the need for the drugs. Sometimes your doctor won’t even mention getting rid of the dog. I guess they figure those decisions are yours to make. And they are. Most of the decisions that your fibromyalgia demands of you are just like that. You can feel better and be mostly free of the drugs, but you might have to give up some things that are precious to you.

Promise yourself that you will take responsibility for your own treatment. You can still choose to do what the doctor recommends, but open your eyes, study your options, and be smart about it.

2009-05-09T07:31:00.000-07:00

Your diagnosis - Your pain

Do you have a diagnosis for fibromyalgia? Did you come by it quickly as I did, or have you been to many doctors? Maybe it is your wife or you child who has the label.

In any case, I want you to know that you aren’t alone.

Chances are you’ll feel alone, because people with fibromyalgia usually look well. There are no distinguishing marks, no gushing blood, and not even anything subtle like being pale or flushed.

Sometimes (perhaps often) other medical conditions exist alongside. But without another condition (which is my case), medical tests are also almost always “normal.”

It can be extremely frustrating for someone who has multiple physical symptoms and who is in great pain to be repeatedly told that their tests reveal them to be “perfectly healthy.” I know from experience what it is like to be a completely miserable, yet verifiably healthy individual.

So if you have pain, and if you have been given the fibromyalgia label, expect frustration. Expect to be inadequate in your explanations with your doctors and loved ones alike. Expect people to doubt you, even completely disbelieve. If someone does believe you, rejoice and recognize how fortunate you are. Count your blessings for the people who understand. I predict they will be very few and far between. And if you are lucky enough to have your spouse as a believer, that person is worth more to you than winning the lottery.

If your emotional imagination works like mine, you might wish for purple spots oozing pus just to demonstrate your agony. Sorry, fibromyalgia is invisible to others. You are the only one who will perceive it.

If you are new to the experience, you might also feel fear. Bearing pain by itself is one thing, but it becomes quite another when you add fear. I completely understand that your arm might feel like it has become dislodged from your shoulder. I sympathize that the pain in the side of your back hurts enough to be a malignant tumor. Fear doesn’t help.

In most cases, medical tests will reveal that your arm is fine and there is nothing in your side to cause your pain. So am I advising you not to seek medical attention? No. Unfortunately, even people with fibromyalgia get injured and sometimes have other problems. Think of it as a test to challenge your frustration tolerance. You thought the pain in your back must have meant a slipped disc, so you went to the doctor and found out it was “just the fibromyalgia” “again”.

As far as I know, fibromyalgia won’t do you any permanent damage. It might be a week or it might be seven years, but your back will feel better again. By then, your left leg might feel like it is broken, but your back will be better.

Recognize the pain and the fear. Acknowledge them. Then remember that even if the pain is mostly out of your control, the fear is optional. For some reason, pain without fear is easier to bear.

2009-05-09T07:26:00.000-07:00

My diagnosis - My purpose

Hello. My name is Susan and I have fibromyalgia.

I’ve always wanted to be a published author. So, one reason for writing this blog is to help fulfill that vision, even if my original ambition was to write fiction and to have my book printed by a reputable publishing company.

As the Rolling Stones song tells us, “You can’t always get what you want, but if you try sometimes, you just might find…..you get what you need.” I need to write and I need to be read.

I was diagnosed with fibromyalgia 15 years ago. I was 36.
It started with a pain in my left arm. At first I thought that I had pulled a muscle. Then, when the pain seemed to intensify and became unbearable, I thought I might have dislocated my shoulder.

I went to the doctor. He’d probably only been out of medical school for a year. He talked to me, touched me in a few places and asked me if it hurt. I don’t remember if he did x-rays or even lab work, but the diagnosis came off his lips on that first visit, “fibromyalgia.” I’d never heard of it, and I was certain that he was wrong.

Since that time, I’ve heard so many stories of people going from doctor to doctor with multiple symptoms and getting so many incorrect diagnoses before finally hearing that word. It seems incredible to me that he nailed it after a 20 minute exam.

On the heels of the first diagnosis, I consulted a neurologist. He spent a couple of hours with me and in the end he gave me a slightly different answer, “Post Traumatic Myofascial Pain Syndrome.” He also told me that he believed I could get well, and he recommended that I see a physical therapist for “strain-counter strain” therapy. He told me that if I didn’t get well, my condition could turn into fibromyalgia.

The physical therapy was nice, but it didn’t solve the problem. And so it has been a long and difficult 15 years.

But my purpose isn’t to tell you about me as much as to share the things that might help you.

Whether I originally had fibromyalgia or not, the pain in diverse places in my body and the symptoms that have added themselves to the original trouble have convinced me that I do indeed have fibromyalgia.

There is a lot of information out there about fibromyalgia, and I’m not a physician, but I have lots of first-hand experience. I’m hoping I can make a difference for you by sharing what has helped me and what has not.

Considering my foe, I’ve done very well. I’ve continued to work full time these 15 years. I’m still married to the same man. Daily, I choose hope over despair.