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Hello Everyone, I have Fibromyalgia and Chronic Fatigue Syndrome (FMS and CFS), so here are some links to help you understand it. Love in Light and Peace, Winds of Change I thought I would post this to help those who don't know about Fibromyalgia or may even have it and don't know it. I got this from a site of a fellow sufferer (Lacey) and thought it describes what I go through very well. I hope this helps in the understanding of a complicated health problem. Winds of Change A LETTER TO THE HEALTHY WORLD
FROM THE LAND OF CHRONIC PAIN AND FATIGUE
Written By (Fill in the name of a friend,
relative, or acquaintance who
suffers from Fibromyalgia.) Gloria/Winds of Change
If you were born with healthy genes, you may know me but you
don't understand me. I was not as lucky as you. I inherited the
predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was,you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am
from you. WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA 1. FMS is not the newest fad disease. In 1815, a surgeon at the
Universityof Edinburgh,William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. (Inserted by me, Winds of Change, I was diagnosed with chronic mono when I was 16 and now know it was Fibromyalgia according to my doctors) Unlike diseases, syndromesdo not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder.
However please remember....stress can effect the body, just as physical paincan effect the mind, causing stress and depression... If you need help in coping..see a therapist...IT does not mean you are " crazy" and it may help find methods to cope! In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability. It is also recognized as a disabling condition by the ARTHRITIS FOUNDATION, THE SOCIAL SECURITY ADMINISTRATION and the MAYO CLINIC. 3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life. WHAT YOU SHOULD KNOW ABOUT ME 1. My pain - My pain is not your pain. It is not caused by
inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real. 2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I dont want to. I am, most likely, paying the price for stressing my muscles beyond their capability. 3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all. 4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time. 5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it. 6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I may sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it. 7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge. 8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely. 9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.. 10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily. 11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going. 12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia. Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one individual of the over 10,000,000 people with FMS, it represents all of them..... it hopefully can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in
their shoes...or their bodies. |
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Dear Winds, Thank you for posting this information..it helps to understand what you go through on a daily basics and what many others out there suffer. Hugs, Jewel |
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Thank you so much for posting this information. I was diagnosed with fibromyalgia 10 years ago after 4 years of too many doctor's visits, therapy and countless tests. I am so thankful there is much more information today about this disorder and growing understanding. Chrissy |
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Dear Jewel and Chrissy, You are both welcome. There are other people here with Fibro and some with Chronic Fatigue besides me, so if you have questions or just want to talk about it a little you are free to post messages under this message about it. I have had Fibro since I was 16 and am now 58, but after my original diagnosis for chronic mono, doctors did not take me seriously after that doctor was no longer around, so when I had a bad attack again about 2001 I think when I could hardly move my arms, I talked to my doctor here in VA and, as we all know the feeling, for some reason I was nudged to tell him about the diagnosis of chronic mono and instantly he said that is Fibromyalgia and sent me to a rheumatologist who checked me and told me I had classic Fibro, because all of the pain points hurt terribly when he touched them. I had to wait a very long time, but finally someone listened. Love in Light and Peace, Winds of Change |
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Dear Winds, You have no idea how much I appreciate your invitation to post here about the health issues we face each day. Recently I have been feeling the "ache" of fibromyalgia far more than usual. The holidays always seem to bring on flare ups. I was thinking about what you had posted in "Meditations" about fear and realized so much of what I fear is connected to the fibromyalgia. My biggest fear is that of making any close friendships. Friendship is a two way street and I often feel I will not be able to give my share to a friendship because of the constant battle with this disease. All to often I have made commitments for lunch, get togethers, etc. and at the last moment had to back out because of pain. Even my husband's and my date night has gone by the wayside because of the chronic pain issues . . . I just can't sit too long for movies, concerts, or leisurly dinners out. I fear I am becoming a hermit in spite of my desire to develope close friendships. Do you experience any of these fears? Hugs, Chrissy |
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Dear Chrissy, I guess you could call it fear that I have over many things, but having friendships is not one of them. A friend who is truly a friend doesn't worry about broken lunch engagements or plans that have to change if they are a true friend and know about your Fibro and what it does to you. My experiences with friends is the ones who are true friends stay my friend no matter if we don't see or talk to each other for months. When we get together it is just like always the friendship stays the same. Just so you know there are people in this world who don't expect everything to be perfect in a friendship and they are what I call good friends. I do what I can for them when I can, but when I can't they understand. I don't go to movies, because of the way they have cranked up the sound system over the years and with the fibro enhancing my hearing it gets downright painful for me. I prefer to wait to see a good movie when it comes out on video or dvd so I can watch it in the comfort of my home with the sound adjusted to the loudness I can take. My husband and I go out to restaurants when I am feeling good. He doesn't mind putting it off until I can hold my own to go out for a good day and evening. I have also found out that I make my fibro worse when I allow myself to be stressed, but that is not the only reason it gets bad. In the last few years when it has just absolutely been so acute that it more or less tries to rule my life, I have learned to live with limits and that is a very hard thing to do. For instance since I have chronic fatigue syndrome along with it, I can't clean house and expect to be able to do much for a couple or three days at the least, so I have to limit cleaning to maybe one or two jobs a day and not big ones ( I have to split those up into more than one day). I also have to limit my time in crowds during flu season and other times when there is a virus going around or something similar, because my immune system is not in top shape and I catch a virus within a day or two of being exposed, so that makes it a little fearful to go out in crowds, but I do it anyway and have been using lysol anti bacterial wet towels to wipe down the parts of the shopping cart I use to prevent picking up as many germs as I used to on them. I don't let it make me paranoid, it just makes me cautious. I have learned it is a matter of choosing between activities and knowing that I can't do it all at one time like I used to. Life changes are a big part of it I think, or at least that is what I have discovered. On top of it all, I try not to fear it, because if I let that take hold I would never go out of the house and that is not what I want out of life, so I fight to keep myself out of depression and away from fear and other negative thoughts and actions that seem to cause me more problems than just teaching myself to limit my activity when I am in pain so that I can recover more quickly and not to overdo it when I do feel great. And now I have talked your ear off, so will see what you can add. Love in Light and Peace, Winds of Change |
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Dear Winds, What you wrote was really very inspirational. I guess I have just not found that true friendship of yet and it is probably an issue I need to put some prayer to. When I was working in Albuquerque, my co workers accused me of being anti social because I would not meet them weekly for drinks after work. Although I would explain about my condition there were always comments about my not joining in. One woman I considered a very good friend became more distant as my condition seemed to worsen with the onset of Trigeminal Neuralgia. I am sure the fear I sense has been born out of the hurt I feel over the rejection. Perhaps it is time for me to consider the wisdom of my grandparents "when you fall off a horse it is best to get back on and try again". I am blessed I have a husband who really does understand and makes every effort to stay up on the latest news and research. I am also very blessed to have found this group where I can express my feelings openly and begin to work through them with the help of new friends. Hugs, Chrissy P.S. I love reading what you write so you can talk my ear off any time LOL |
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Dear ACertainSmile, When I read what you said about your friend becoming more distant when you had the onset of Trigeminal Neuralgia it made me think of all of the times I watched and also realized that some people back away from us when we get ill or get worse, because they don't know what to do for us to help us feel better and when they realize they just can't stand to see us hurt and feeling so alone and lost over being different all of a sudden. They leave because they feel totally helpless (the ones we had been closest to) and don't know how to deal with it. I learned to not resent them and to let them go and pray for them, because they don't like pulling away deep down as much as we don't like them to. I have heard many express how they wished they could have remained around those who were ill, but they just can't find it in themselves to be comfortable. I guess we all have our things we can't deal with in an acceptable manner. You have a great thing going for you with your husband understanding. Many men can't understand or don't want to, so you have been blessed with having him on your side. My husband looked up all he could find about it after my diagnosis and that means so much when they know what the symptoms and the added problems that can come from it and just support us. Yes, your grandparents were right. You just pick yourself up and brush off as many hurt feelings as you can and move forward. Keep your head high and your thoughts positive and move forward. If you keep looking back at what you have lost, then you might miss those doors opening ahead of you with wonderful suprises for you. (((((((((((HUGS))))))))))) I am glad you found us too and feel the way you do about feeling free to discuss and talk here. Love in Light and Peace, Winds of Change |
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Dear Fellow FMS and CRS sufferers, I hope you are faring better than me with the cold and warm shifts back and forth in the weather. I have been so tired and so achey this past week that I don't know if I am going to get it under control for the weekend. I guess if I don't then I hope people will understand. lol Anyway, I hope you will be able to enjoy the holidays without alot of pain and exhaustion. (((((((((((((((((HUGS))))))))))))))) Love in Light and Peace, Winds of Change |
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When a Loved One Has Chronic Fatigue Syndrome or Fibromyalgia
by Amy Scholten, MPH Chronic fatigue syndrome (CFS) and fibromyalgia (FMS) are debilitating and misunderstood chronic illnesses that can strike people of both sexes and all age groups. Partners, friends, and relatives of people with CFS or FMS may feel confused and helpless, not knowing what to say or how to offer support. Perhaps chronic fatigue syndrome (CFS) or fibromyalgia (FMS) has stricken your spouse, your child, your sibling, or a good friend. Whatever the case, it’s difficult for you to see a loved one in such pain. The illness presents new challenges to your relationship, as well. It may also worsen any existing relationship problems. You want to be positive and helpful but you don’t know what to do or say. Maybe you’ve tried to be supportive and find that your loved one reacts in frustration. What should you do? These tips from the Chronic Fatigue and Immune System Dysfunction Syndrome Association of America may help: Seek First to Understand
Most people know very little, if anything, about CFS and FMS. Both conditions involve much more than “a little fatigue�?or “a few aches and pains.�?If you have a friend or loved one with CFS or FMS, you should learn as much as possible about these conditions. The more you understand your loved one’s condition, the better you will be able to support her or him. Chronic Fatigue Syndrome (CFS)
Chronic fatigue syndrome (CFS) is a chronic, debilitating disorder that affects the brain and multiple parts of the body. It causes extreme fatigue that is not relieved with bed rest and is often made worse by physical or mental activity. Symptoms last at least six months and are severe enough to impair or interfere with daily activities. Symptoms vary from person to person and may include: Chronic fatigue that is not relieved with bed rest and often worsens with physical or mental activity
General weakness Muscle aches
Joint pain without swelling or redness
Headaches
Trouble with short-term memory or concentration
Forgetfulness or confusion
Irritability, anxiety, mood swings, or depression
Low grade fever, hot flashes, or night sweats
Sore throat
Tender lymph nodes
Trouble sleeping or not feeling refreshed after sleep
Prolonged fatigue lasting 24 hours or more after exercise
Eyes sensitive to light
Allergies
Dizziness
Chest pain or shortness of breath
Nausea Fibromyalgia (FMS)
Fibromyalgia is a chronic disorder that causes widespread pain and stiffness in the muscles, tendons and ligaments, along with un-refreshing sleep and fatigue. Symptoms vary from person to person and may include: Generalized fatigue or tiredness
Reduced physical endurance
Generalized aches and pains of muscles, tendons, and ligaments
Muscle tightening or spasms
Pain in specific areas of the body, especially:
Neck
Shoulders
Chest
Back (upper and lower)
Hips and thighs
Insomnia or poor sleep
Sensations of numbness or swelling (although swelling is not actually present)
Chronic headaches, including migraines
Morning stiffness, worst on first arising Do Not Invalidate
Sometimes people think that individuals with CFS or FMS are lazy, exaggerating their symptoms, or suffering from a psychiatric condition. They may mistakenly believe that their loved one just needs to push herself a little harder. People with CFS or FMS often feel invalidated when they hear: “You look good to me.�?(Underlying invalidating message: “You don’t look sick, therefore you must be exaggerating or faking.�? “Oh, I’ve had symptoms like that before.�?“I get tired like that too.�?(Underlying invalidating message: “So, what’s the big deal? Everybody gets tired. Get some rest.�? “Have you tried (a suggested treatment)?�?(Underlying invalidating message: “If you don’t take this remedy or do anything to help yourself, it’s your own fault that you’re still sick.�? “Are you still sick?�?(Underlying, invalidating message: “What’s wrong with you? It’s your fault that you’re still sick.�? Acknowledge and Validate the Person’s Experience
People with CFS or FMS often face a number of challenges, including: Not being taken seriously by their families, friends, employers, and even their doctors and other health care providers
The unpredictability of their illness
Decreased ability to participate in previous levels of professional, social, educational and personal activities
Dependency and a sense of isolation Many people use denial to deal with a loved one’s chronic illness. Rather than listening, believing and showing compassion for what the person is going through, they discuss the facts and minimize the severity of the situation. When you fully acknowledge your loved one’s situation, you are letting him or her know that you truly care, love and support her. The following tips can help: Acknowledge the difficulty - “I can’t imagine how difficult all these changes must be for you.�?/FONT> Acknowledge losses, sadness, and anger - “I’m so sorry that you had to give up your job.�?“It must be horrible that you don’t have the strength to continue your education.�?/FONT> Inquire and listen with compassion. �?When you ask your loved one how they are feeling, they may be feeling ill, tired, achy, or depressed. If you only want to hear that your loved one is feeling good, stop asking how they are feeling. Otherwise, they may sense your expectation, disappointment, disinterest, or inability to understand. Instead you might want to ask: “How are you managing things today?�?“What’s going on?�?/FONT> Be Supportive and Understanding
Chronic illness presents many relationship challenges at a time when comfort and social support are of utmost importance. Here are some ways you can help: Be patient. Remember that your loved one has had to make many adjustments and is doing the best that he or she can.
Provide frequent reassurances of your love and support.
Offer practical help, such as running errands, helping with household chores and shopping.
Take your loved one to medical appointments. Show an interest in his or her care and provide emotional support.
Find ways to spend time together, doing low-energy activities such as watching a movie or video, eating a meal, going on a picnic, playing a game, sitting in the park, or giving a massage.
Don’t feel that you have to “fix�?problems or give advice. Many times, just being there, listening, and showing compassion is enough.
Express gratitude for whatever your loved one can give you, in spite of his or her limits.
Ask how you can help your loved one.
Express admiration for the strength and courage you see in your loved one as he or she copes with the challenges of the illness.
Your loved one may have mood swings due to the stress and challenges of having a chronic illness. Do not take emotional reactions personally.
Try to be sensitive to your loved one’s feelings and needs. Listen and learn to be perceptive.
Stay in contact with your loved one. Even if he or she isn’t as active and involved in mutual interests or gatherings as they once were, be sure to invite him or her anyway. Expect Changes and Unpredictability
CFS in particular, is a very unpredictable illness. Symptoms can be changeable, so your loved one may not be able to predict how she will feel hours or even minutes ahead of an event. Try to be sensitive to this and expect the following situations: It will sometimes take longer than usual for him or her do certain things.
It may be hard for him or her to make definite plans.
He or she may not have the energy to spend with you, at certain times.
He or she may not remember certain things (CFS can cause cognitive problems and “brain fog.�?
He or she may have unpredictable emotional ups and downs. Take Care of Yourself and Your Relationship
CFS and FMS are difficult illnesses—not just for the sufferer, but for those who care. It’s normal to feel disappointed, impatient, guilty, frustrated, helpless, and cheated. It’s important that you take adequate care of yourself so that you can provide support. This means eating properly, getting regular exercise, managing your stress, and talking openly about your feelings with a family member, a friend, or a professional counselor. Talk with your loved one about how the illness affects your relationship. Ask how you can help each other. Keep in mind that support from family and friends is essential to the well-being of people with CFS and FMS. RESOURCES: Sources: Centers for Disease Control and Prevention National Institutes of Health Chronic Fatigue and Immune Dysfunction Syndrome Association of America American Fibromyalgia Syndrome Association From Health Newsletter: |
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I got this in email and went to the site and subscribed to their newsbulletin. I don't know if this will work for everyone, but I have noticed how my good days are used too much and it takes me several days to recover. I am open to any suggestions so this makes sense to me more than alot of things I have read or done. Promoting Recovery: The Fifty Percent Solution
by William Collinge, Ph.D.
ImmuneSupport.com 05-25-2006 Author of Recovering from Chronic Fatigue Syndrome: A guide to Self-Empowerment (Putnam/Perigree, 1993)
The experts agree that lifestyle change is the foundation for recovery from CFS. According to Paul Cheney, M.D., this is "easily the most important and often the least emphasized" part of treatment.
CFS is a cyclical disease. One important aspect of lifestyle change is how you manage your cycles. You can be "doing everything right," and you'll still have cycles, often for no apparent reason. You can, however, learn to reduce their severity, and even use them to your advantage. Here's how.
On the "Good Days"
Waking up to one of those precious "good days" is like finding an unexpected $100 in your pocket. What do you do with this extra money? The temptation might be to go out and spend it all. You may want to "make up for lost time" and do everything you've been deprived of: go shopping, go for a long walk, do the laundry, clean the windows, go to a movie, wash the car, shampoo the carpet, and finish those three or four other projects... knowing that this is a rare opportunity to "get a lot done." And then, of course, you crash.
There is an alternative way to work your cycles. You can actually use the good day to help build momentum toward healing. Think of the good day as a form of "capital" that can be invested in your healing process–rather than being spent or squandered.
I call this "the fifty percent solution," and it goes as follows: When you awaken to a good day, make an assessment of how much you feel you can do. For example, you might make a list often things you feel capable of doing and want to do today.
Now, instead of spending all your newfound capital, you would do half the things on your list, and then stop. For the next day or two, you observe your body's responses.
If you crash, your assessment is adjusted downward on your next good day. If you feel fine, you may want to repeat this process, each time doing just half of what you feel capable of doing. As your confidence grows, your appraisal of how much you can do may increase, but you still do just half.
"The essence of the fifty percent solution is that you spend half your energy and invest the other half."
What to do with the other half of your energy? This is the key. It takes some self discipline, but here is where you have a chance to do something clever.
The essence of the fifty percent solution is that you spend half your energy and invest the other half. What is not spent outwardly is used inwardly to support your body's self-repair mechanisms. Thus, even though you don't feel you need to, you take extra time to rest. The rest that you get on a good day is of a higher quality than that on a bad day. By gaining extra "unneeded" rest on a good day, you are investing in a savings program that collects interest.
Your body's self-repair mechanisms are what will eventually lead to your recovery. By giving them the benefit of this extra good quality rest, you build momentum toward a higher baseline of functioning.
As you move further toward recovery, your assessment of your available energy will gradually rise. By managing your energy conservatively on your good days, eventually your periods of remission can lengthen, and the severity of your relapses can gradually diminish.
Let your wealth grow. Don't spend every penny you find in your pocket. The fifty percent solution has served as a useful guideline for many former PWC's in promoting recovery.
William Collinge, PhD. is a consultant, author, speaker and researcher in the field of integrative health care. He has served as a scientific review panelist for the National Institutes of Health in Mind/body medicine and complementary therapies.
Article excerpted from the book Recovering From Chronic Fatigue Syndrome: A Guide to Self-Empowerment. Articles available for download free of charge from www.healthy.net/collinge/writings.html |
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