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FAMILY & FRIENDS Friends and Families

Having a friend or family member with Fibromyalgia (FM) and/or Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) can be difficult on you and your relationship with them. This section will help you to understand what they are experiencing and feeling, and how you can help them.

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Introduction

Living with someone who has Fibromyalgia (FM) or Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a tough job, whether that person is completely disabled, 50% functional, or goes through occasional flares. In all likelihood, having a chronically ill person in your household will impact your life.

You can, however, take steps to make things easier for yourself. Do you feel guilty for even wanting that? You're not alone - a lot of people in your situation feel like they should be worried about the sick person and not themselves. Your first step is to accept that living with someone who has FM or CFS/ME doesn't mean you forfeit your right to feelings of your own.

But let's be completely honest here: Those of us with FM amd/or CFS/ME can be difficult people to deal with at times. When you're feeling especially burdened by housework, financial matters, and caretaking, a sharp tongue or blank stare doesn't help matters at all. You may not be able to discuss your feelings with the sick person in your life as she might not be in a place to accept that your feelings are directed at the situation and not at her. It's a good idea to find support from other places to get you through this.


Feeling the Loss of "How Things Were"

Both you and your loved one will have to come to terms with changes in your life. FM and CFS/ME are chronic conditions, which means your life is not likely to ever be what it was before. That's a tough thing to accept, and you'll each need to reach acceptance in your own way and in your own time.

Essentially, you need to grieve for what you've lost. The stages of grief are:

  1. Denial - A refusal to accept what is happening.
  2. Anger - Feeling like it's not fair or being angry in general.
  3. Bargaining - Promising something if the situation goes away.
  4. Depression - Giving up, not caring what happens.
  5. Acceptance - Coming to terms with the situation and being ready to move forward.

Where are you in the grief process? Identify it now, and look at what the next stages are likely to bring. If you feel like you've been stuck in one stage, find someone to talk to about it. If you feel like you need a professional counselor to help you, don't be ashamed of that and talk to your doctor. If you become clinically depressed or simply cannot accept your new situation, you won't be doing any good for yourself or for the sick person in your life.


Managing Your Expectations - In Three Steps

Part of accepting the situation is managing your expectations. For example, my ex-husband and I used to go for bike rides, maybe take a walk around the block. He had to change his expectations about how we would spend our time together. I also left my career and my income behind and hoped that I'd be able to find something I could do from home. That meant he had to change expectations about our financial future as well.


Step #1

The first step toward managing your expectations is to take an honest look at your situation and ask yourself, "What do I know about the circumstances?" Taking a little time to learn about and understand the condition will help you deal with the reality it creates.


Step #2

Second, take a long-term look at things. Think, "If things stay just as they are now for a year or longer, how will that impact me, my family, and the person who is sick?" This can be an overwhelming question, when you consider financial, emotional, social and emotional issues. Approach them one at a time and try to stay logical.

Once you've identified what is likely to change, allow yourself to grieve for the things that have to fall by the wayside (at least for now) and let them go. Then focus on the areas where you foresee big problems and work toward realistic solutions.


Step #3

Don't feel like you're alone in finding solutions. Involve your sick loved one as much as possible, call on friends, family, doctors, clergy, social services, your insurance company and anyone else who may be able to help you find ways to get through this.


Moving On With Your Life

Once you've gone through the stages of grief and the steps outlined above for changing your expectations, you'll likely be better equipped to move forward with your life and to be supportive of the sick person in your life. On behalf of that person, I thank you for taking the time to care.

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Explanation of Fibromyalgia (FM)

Fibromyalgia is a complex condition that's difficult to understand, even for some people with a medical degree. Because it involves the brain and nervous system, FM can have an impact on virtually every part of the body.

If you're trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide FM must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition.

Digging through that scientific research doesn't help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren't exactly easy to grasp.

We will try to help you understand and relate to what's going on in the body of someone with FM, in plain terms and without medical jargon.


Understanding the Pain of Fibromyalgia

Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't know show, and instead of 20 guests, you get 100. You're overwhelmed.

That's what's happening with pain signals in someone who has FM. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.

When those pain signals reach the brain, they're processed by something called serotonin. People with FM, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.

This is why people with FM have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into very real pain.

Other substances in the patient's brain amplify signals - essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can overload the brain. This can lead to confusion, fear, anxiety and panic attacks.


Understanding the Ups & Downs of Fibromyalgia

Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with FM be unable to do something on Monday, yet perfectly capable of it on Wednesday.

Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.

Research shows conclusively that FM involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel.


Understanding Stress & Fibromyalgia

Some people think FM patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.

The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what's happening.

People with FM don't have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.

Also, when we talk about "stress" we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.


Understanding the Fatigue of Fibromyalgia

Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.

Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.

With FM, though, comes sleep disorders that make a good night's sleep a rarity. A person with FM can have anywhere from one to all of the following sleep disorders:

  • Insomnia (difficulty getting to sleep or staying asleep)
  • Inability to reach or stay in a deep sleep
  • Sleep apnea (breathing disturbances that can wake the person repeatedly)
  • Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)
  • Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)


Fibromyalgia In a Nutshell

A lot of illnesses involve one part of the body, or one system. FM, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes.

FM can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

  • It's NOT psychological "burn out" or depression
  • It's NOT laziness
  • It's NOT whining or malingering
  • It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and so far, impossible to cure.

The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier.

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Fibromyalgia (FM) FAQ's

Understanding FM is difficult, and a diagnosis can raise more questions than answers. To help you get started, look through these frequently asked questions. If you have questions that aren't answered here, contact us!


Is FM Progressive, meaning does it get worse over time?

Answer: FM is not generally considered a progressive disorder, but in some cases it does progress. In most people, FM symptoms go through flares (when symptoms are severe) and remissions (when symptoms are minimal or absent).

Some people find ways to dramatically reduce their symptoms and enter long-term remissions. Others however, experience an overall worsening of symptoms over time, and these cases could be considered progressive.

  • Back To FM FAQ's

  • Is FM Degenerative?

    Answer: No. FM, unlike other similar-appearing conditions, does not cause damage to bones, joints, tissues or organs.

    Many people with multiple sclerosis, lupus, rheumatoid arthritis and other degenerative rheumatic or autoimmune diseases may also have FM. Researchers, though, have not found evidence that FM makes you more likely to develop other rheumatic or autoimmune disorders.

  • Back To FM FAQ's

  • Is FM an Autoimmune Disease?

    Answer: No, FM is not an autoimmune disease. In autoimmune disorders, the immune system attacks parts of the body. In FM, irregularities in hormones, neurotransmitters (messengers in the brain) and enzymes (substances necessary for chemical reactions) are responsible for symptoms.

    Some researchers, however, suspect the immune system may be somewhat irregular in people with FM.

  • Back To FM FAQ's

  • Are FM & CFS/ME the Same Thing?

    Answer: The answer depends on who you ask. Some doctors believe they are the same or are different forms of the same condition.

    As researchers learn more about FM and CFS/ME, they're learning more and more about the differences between them.

    For instance, the immune systems of people with CFS/ME typically behave as though they're actively fighting an infection, even though no infection is present. People with FM don't have the same immune response going on.


    Similarities Between FM & CFS/ME

    FM and CFS/ME are known to have a host of symptoms in common. They include:

    • Pain
    • Fatigue
    • Sleep disorders
    • Irritable bowel syndrome symptoms
    • Chronic headaches
    • Association with Temporomandibular Joint Syndrome (TMJ)
    • Cognitive or memory impairment
    • Dizziness
    • Impaired coordination

    Differences Between Fibromyalgia & Chronic Fatigue Syndrome

    One key difference, when it comes to a diagnosis, is which symptom is worst, pain or fatigue. The diagnosis could also be influenced by whether your doctor is more familiar with the American College of Rheumatology's criteria for FM or the CDC's guidelines for CFS/ME.

    However, experts have found some significant differences. CFS/ME tends to begin after flu-like symptoms and may be linked to a virus. CFS/ME patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FM patients. Also, CFS/ME diagnostic criteria include low-grade fever and sore throat, while FM criteria do not.

    Meanwhile, the onset of FM frequently is traced to a physical or emotional trauma. The pain of FM gets better with heat and massage, while the pain of CFS/ME does not. Further, people with FM have tender points and abnormal levels of a cellular chemical called substance P (which transmits pain signals), and this level appears to be normal in those with CFS/ME.

  • Back To FM FAQ's

  • Why Don't NSAIDs Work for FM Pain?

    Answer: It's a common misconception that FM is an inflammatory or rheumatological condition, but it is not. While researchers still have many theories about the mechanisms behind FM, many of them now believe the condition is more neurologically based.

    Aleve® (naproxen sodium) and ibuprofen based drugs (Motrin®, Advil®) are non-steroidal anti-inflammatory drugs (NSAIDs), and are most effective against pain that accompanies inflammation. They're generally not as effective against other types of pain, especially when pain is severe.

  • Back To FM FAQ's
  • Explanation of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

    We all get tired. It's part of life, and especially part of modern life. Think for a moment about the last time you were really tired at work. It's harder to focus, harder to function, but you can push through it.

    Now think back to the last time you were really sick with something like strep or the flu, too sick to work, and too sick to function. Can you remember how exhausted you were, how hard it was to get out of bed and even take a shower? When you're sick like that, it's like your body just shuts down and demands that you rest.

    There's a big difference between the two types of tired, right? That second kind of tired is what people with CFS/ME deal with every day. They're not just sleepy, and they can't just push through it. They're so wiped out that their bodies demand rest and sleep constantly.

    Most people who are regularly tired can trace it to some aspect of their lives, they don't get enough sleep, they're too busy, they're under too much pressure, etc. People with CFS/ME, however, don't have an obvious cause of fatigue. Usually, they were perfectly healthy people one day and no longer healthy the next.


    What Does Chronic Fatigue Syndrome Do to Your Body?

    In most cases, CFS/ME comes on suddenly. While scientists don't yet know exactly what causes it, a growing pool of evidence points to a combination of genetic predisposition and exposure to viruses or toxins. Many cases start after a flu-like illness, but then some of the symptoms never go away.

    What many experts believe is going on in the body of someone with CFS/ME is constant immune system activation, as if the body is trying to fend off illness. Working that hard all the time is a big drain on the body, which is part of the reason we all get so tired when we're sick.


    Beyond Fatigue

    As if that level of fatigue weren't enough to deal with, CFS/ME can bring a host of other symptoms. Experts recognize about 45 of them, and each person deals with a different mix of symptoms and levels of severity.


    Common CFS/ME symptoms include:

    • Sleep that isn't refreshing
    • Muscle and joint aches
    • Headaches
    • Sore throat
    • Swollen lymph glands
    • Cognitive problems

    The cognitive problems associated with CFS/ME are sometimes severe. Regardless of how intelligent the person is, he or she may become forgetful, be unable to recall common words, frequently lose a train of thought, or sometimes become confused. Simple tasks such as reading a newspaper, cooking a simple meal, or finding your car in a parking lot become daunting and overwhelming.

    Well-meaning people frequently tell those with CFS/ME that they'd feel better if they'd get more exercise. Most people do get an energy boost from exertion, but people with CFS/ME don't. They have a symptoms called post-exertional malaise, which means that even small amounts of exertion can make all of their symptoms worse for a couple of days. Since deconditioning can add to the fatigue and weakness that CFS patients face, a gentle graded routine is one of the treatment recommendations.


    Chronic Fatigue Syndrome, Disbelief, and the Need for Support

    Imagine suddenly feeling sick and exhausted all the time and having someone tell you that you're not really sick. People with CFS/ME face that all the time. Some doctors say they're depressed or that it's all in their heads - they're just whiners or hypochondriacs. It's also common for them to tell someone, "I have CFS/ME," and hear something like, "I think I have that, too. It seems like I'm always tired."

    Because we don't yet have a good diagnostic test for CFS/ME, sometimes it's hard for people with the condition to convince the people around them they're really sick. It can strain marriages, drive friends apart, and make work conditions especially stressful. People with CFS/ME often end up feeling isolated, which compounds the depression that frequently goes along with any debilitating illness.

    Some people with CFS/ME find medications, supplements and life-style changes that help them feel better, but it's a long, difficult process of experimentation and not everyone finds things that make a big difference. So far, no drug is FDA approved for treating CFS/ME, and no treatment works for everyone.

    Chronic fatigue syndrome can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

    • It's NOT psychological "burn out" or depression.
    • It's NOT laziness.
    • It's NOT whining or malingering.

    It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.

    CFS/ME is a serious, life-altering, frustrating, often misunderstood illness. What people with CFS/ME need most of all from those around them is emotional support and understanding.

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    Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) FAQ's

    Understanding CFS/ME is difficult, and a diagnosis can raise more questions than answers. To help you get started, look through these frequently asked questions. If you have questions that aren't answered here, contact us!


    Aren't people with CFS/ME just 'tired' instead of 'sick'?

    Answer: No, they're not. People with CFS/ME are more than "just tired." They're suffering from an intense fatigue that doesn't go away. No matter how long they sleep, they don't wake up feeling refreshed.

    Many people with CFS/ME also have a lot of muscle pain and other flu-like symptoms, so, essentially, they feel as if they have the flu all of the time. Their immune systems also show signs that they're actively fighting an infection.

    Many researchers suspect the cause of CFS/ME is at least in part to a chronic viral infection that's hard to dectect or a "hit-and-run" virus that leaves the immune system permanently activated.

  • Back To CFS/ME FAQ's

  • Why Does CFS/ME have So Many Names?

    Answer: CFS/ME goes by so many names for a couple of reasons. Mainly, a lot of patients, patient advocates, doctors and researchers believe the name "chronic fatigue syndrome" trivializes the disorder and leads to misconceptions and even a lack of research funding.

    While they'd like to see a name that reflects the severity of the condition, since no one really understands the causes and mechanisms behind chronic fatigue syndrome, it's been difficult to come up with a name that's accurate and universally accepted.

    The name CFIDS, which stands for "Chronic Fatigue and Immune Dysfunction Syndrome," became common several years ago, as patients and advocates tried to make the name of the condition more reflective of what's going on in the body. However, while research has identified some immune system irregularities, findings are inconsistent and we don't have solid evidence that it's a major cause of symptoms.

    CFS/ME (sometimes ME/CFS) is now becoming popular. In many countries, the condition is called myalgic encephalomyelitis, which some researchers, patients and advocates believe is more diagnostically correct. In the United States, there has been considerable controversy over whether encephalomyelitis or Encephalomyelitis is more accurate, so the compromise is to use just ME. Advocacy groups want to transition from CFS to ME by re-educating the public and medical community. Their plan is to first use ME/CFS and then later drop CFS altogether.

    Complicating the debate, critics of the current name-change effort point out that we don't have enough evidence to prove that encephalomyelitis or Encephalomyelitis are significantly involved in chronic fatigue syndrome. Many people have recommended holding off on a name changed until the mechanisms behind the condition are better understood.

  • Back To CFS/ME FAQ's

  • Is CFS/ME a Psychological Condition?

    Answer: No, even though CFS/ME and depression do share some symptoms, CFS/ME is not a psychological condition. Research shows multiple physiological abnormalities in the nervous systems, immune systems and hormones of people with CFS/ME that are not shared by people who are depressed.

    Also, it should be noted that depression actually is a physical illness. The overlap in symptoms between depressiona and CFS/ME is likely due to common mechanisms involving brain chemistry, including abnormal levels of the neurotransmitters serotonin and dopamine.

    Many people with CFS/ME become depressed, but that's generally believed to be the result of living with a debilitating illness. People with other serious illnesses, such as cancer, also are at a high risk of depression.

    Some research suggests that people with a history of depression may be at higher risk of developing CFS/ME, but this is highly controversial. Again, this link could be the result of common physiological mechanisms.

  • Back To CFS/ME FAQ's

  • Are FM & CFS/ME the Same Thing?

    Answer: The answer depends on who you ask. Some doctors believe they are the same or are different forms of the same condition.

    As researchers learn more about FM and CFS/ME, they're learning more and more about the differences between them.

    For instance, the immune systems of people with CFS/ME typically behave as though they're actively fighting an infection, even though no infection is present. People with FM don't have the same immune response going on.


    Similarities Between FM & CFS/ME

    FM and CFS/ME are known to have a host of symptoms in common. They include:

    • Pain
    • Fatigue
    • Sleep disorders
    • Irritable bowel syndrome symptoms
    • Chronic headaches
    • Association with Temporomandibular Joint Syndrome (TMJ)
    • Cognitive or memory impairment
    • Dizziness
    • Impaired coordination


    Differences Between FM & CFS/ME

    One key difference, when it comes to a diagnosis, is which symptom is worst, pain or fatigue. The diagnosis could also be influenced by whether your doctor is more familiar with the American College of Rheumatology's criteria for FM or the CDC's guidelines for CFS/ME.

    However, experts have found some significant differences. CFS/ME tends to begin after flu-like symptoms and may be linked to a virus. CFS/ME patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FM patients. Also, CFS/ME diagnostic criteria include low-grade fever and sore throat, while FM criteria do not.

    Meanwhile, the onset of FM frequently is traced to a physical or emotional trauma. The pain of FM gets better with heat and massage, while the pain of CFS/ME does not. Further, people with FM have tender points and abnormal levels of a cellular chemical called substance P (which transmits pain signals), and this level appears to be normal in those with CFS/ME.

  • Back To CFS/ME FAQ's
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    For the Caregiver

    Caregivers play a vital role in the lives of the family or friends they care for. Often times they are the only link to the outside world for people with chronic illnesses such as Fibromyalgia (FM) and/or Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

    If you are a caregiver you must remember to take care of your own needs. All too often caregivers are so focused on looking after others, they neglect themselves. Below are some tips for you; the caregiver.

    For the New Caregiver

    If you're new to the role of caregiver, you may be in total shock. Nothing in life really prepares you for the role of caregiver unless you're already associated with the medical or psychiatric care field. But you can draw on many past lessons and skills to aid you. Here are a few:

    • What you learned in Sunday School
      Most of us have learned about "The Golden Rule: do unto others as you would have them do unto you." Even if you've never had experience as a caregiver, you can make an educated guess as to how your loved one would like to be treated.

    • What you learned at work
      Many of us have spent some time working at a job. You probably learned that you have to treat people civily and with a bit of respect to get along. The same goes for your sick one now. They only want to be treated with dignity and concern for their welfare. Plus, if you're really getting into this, consider that they want to be valued and want to feel worthy.

      A person with Fibromyalgia (FM) or Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) at times may not be able to do much, but he or she is still a person who really needs you! If you don't say or do anything to "de-value" your loved one, they will survive with a more intact, healthy sense of self-worth, which supports them in the process of getting well.


    • What you learned from being with your buddies or girlfriends
      You laugh, poke fun, giggle and tell jokes with your best friends. Do the same with your sick loved one when the timing is right. It will help them feel normal to be able to understand and laugh at a joke. Humor is infectious in a good way!

    Acceptance

    The life of a caregiver generally revolves around the person being cared for. However, the caregiver must institute some ground rules in order to maintain their balance. The main thing to remember is that you must be stable in mind and body in order to be of help to someone else.

    Always remember the instructions given at the beginning of every flight. In case of emergency, put the oxygen mask on your face first and then assist a child, an elderly or anyone unable to help themselves. So, let us apply that to our lives. Let us put the oxygen mask on our face first then assist the family member. Yes, you will feel guilty that you are taking care of yourself. But, if you're sick you will not be able to perform your caregiving duties.

    Seek Help

    Another strategy is to ask for help. Yes, ask for help. If everyone thinks that you can handle it, they will not offer to help. It is amazing how others just jump right in when you aren't able to handle it.

    Caregivers should not wait until they are in need of care themselves before they ask for help. An ounce of prevention is better than a pound of cure. Set up a schedule with other family members from the beginning so that you can get a break as needed. Not to mention the need to take care of your personal matters and your career.

    Rejuvenate

    High on the priority list of strategies is taking time to rejuvenate and refresh your mind. This action prevents burnout and frustration. It can be five minutes at a time, just enough time to quiet your mind and reconnect to your source. A bonus would be if you could get someone to take over for a week so that you can go away to relax. During that time you should not have any communication to find the status of things because that would not be relaxing.

    I suggest that you do whatever activity that is relaxing to you to calm your mind. Some effective ones are sitting quietly reading a book, taking a nice long warm bath, getting a massage or a full day at the spa. Even just lying in bed resting for a while can do wonders.

    Exercise

    Exercise is a very important part of maintaining a balanced life. A simple walk around the block goes a long way in improving your health if done consistently. You must incorporate some form of exercise into your daily routine. Not only is this beneficial to your physical health, it is highly beneficial to your mental health.

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    What "We" Don't Want to Hear

    Certain phrases really annoy a lot of us with chronic illnesses such as Fibromyalgia (FM) and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). While they're usually said with the best of intentions, we hear them so often and they reflect such a lack of true understanding that they're like fingernails on a chalk board.

    Here are some things to avoid saying to someone with FM, CFS/ME, or any other invisible illness:


    "You look great - you must be feeling better."

    We're likely getting better about concealing how we feel, not feeling better. Or it might be a single good day after a month of horrible days.


    "Let's get you out of the house. It'll give you a boost!"

    If we're staying home all the time, it's probably because we're not feeling well enough to get out.


    "Are you sure you're not just depressed?"

    If only it were that simple! Yes, many of us are depressed, and even if we're not the symptoms can appear similar. However, depression alone can't explain the broad range of symptoms we experience (often several dozen of them at a time.) Plus, depression is a very real physical illness, so the phrase "just depressed" is inappropriate either way.


    "I've been really tired lately, too. I know how you feel."

    If you're so tired that you feel on the verge of total physical, mental and emotional collapse, you might. Otherwise, statements like that make it seem like you're trivializing an illness that's much more than being tired.


    "If you'd (exercise more, lose weight, eat a better diet, get back to work) you'd feel better."

    While exercise or dietary changes do help some people with these conditions, they also can make us much worse. We know our bodies best and need to research those changes for ourselves. Weight has never been shown to exacerbate symptoms of FM or CFS/ME, and the physical and mental stress of "getting back to work" is far more likely to make us crash than recover.


    "You should try this new supplement, vitamin, medication. You'll be cured!"

    For many people with FM and/or CFS/ME it has taken them years to fine-tune their regimen of supplements and foods. Yes, I am sure many of them would benefit from massage, blood tests, medical care, organic food, acupuncture, and chinese herbs, but most people can't afford them. As for "cures", there are no such thing. Anyone who tells you they have a cure is either trying to get your money, lying to you, or both! Beware of these people.


    "You just haven't found the right doctor."

    Pain, trouble walking and working accompany this person every single day of their lives, and there is no end in sight. The probability of a cure is not an issue - the necessity of living with illness is the only acceptable option. Your acceptance of their reality impinges on the disabled person's acceptance of life with illness/disability.


    "Oh I forgot my perfume, fabric softner, smoking makes you sick"

    Many people with FM and CFS/ME are allergic to, or are sensitive to: fabric softeners, essential oils, perfumes, bleach, any and all pesticides. When you keep "forgetting," they get one of two messages:

    1. You don't believe they're really sick.
    2. You don't care.


    "At least you can still (hear, see, etc.)." Or, the classic: "You should count your blessings."

    If you have not experienced the loss, don't assume it's easy to discount. When your whole life has been turned upside down and nothing will ever be the same, it's hard to think you're "blessed".

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    What "We" Do Want to Hear

    Sometimes it's hard to know what to say to someone with an invisible illness, such as Fibromyalgia (FM) and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME/). Here are some things that someone with FM and CFS/ME would welcome hearing:


    "If you're not up to going out, we can just get together and (talk, play cards, watch a movie)."

    This shows that you understand the limitations of our illness and it gives the person an alternative to canceling plans.


    "Let's do our grocery (or Christmas) shopping together. I'll pick you up."

    Shopping can be extremely tiring for us, and it can really help to have someone else there to help with things like loading and unloading the car, or trekking back across the store for a forgotten item on the other side.


    "How much are you up for today?"

    This shows that you understand that our energy levels can vary from day to day and can help your companion feel comfortable expressing his/her limitations.


    "How are things going?"

    This is better than asking "how do you feel." It opens the door to all aspects of life, instead of just physical well being. Most days, I don't feel that great, but my life might be going really well.


    Can I (pick you up, help with that, etc.)?"

    This works better than something like, "Do you need me to...." because it shows a willingness on your part to help without implying the person is incapable or is a burden.


    On a personal note: It's very difficult for those of us in wheelchairs to open doors for ourselves. If you see someone struggling to open a door while in a wheelchair, or using a walker, by all means HELP THEM!

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    Conclusion

    FM and CFS/ME can change the lives of an entire family. Remember that you will have a long and sometimes difficult situation ahead of you. Be patient with yourself and your patient. Take a break from the situation occasionally. Talk with friends and family who support you. Search out the things that can help you keep your balance and continue with the work you have ahead of you.

    On behalf of all those who suffer with FM and/or CFS/ME, I thank you for caring.

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