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LETTER TO FAMILY AND FRIENDS EXPLAINING FIBRO
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Letter to family and Friends explaning FibroPosted on 05/04/11, 12:49 am Perhaps the cries we hear most often are, "My family doesn't understand!", "How can I explain to my employer?", "What do I tell my kids?", "My husband/partner/spouse thinks I am lazy.", "My friends tell me to relax and ignore it!" Below are some ways others have handled this and also some ideas from the experts!

What To Tell Family and Friends

One of the hardest things about fibro is making others UNDERSTAND. This page shares some of the letters and other ways fellow fibro sufferers have explained this to their family and friends:




WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

FMS is not the newest fad disease. In 1815, a surgeon at the University of Edinburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do 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.

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 affect the body, just as physical pain can affect the mind, causing stress and depression. If someone needs help in coping or dealing with depression, they should see a therapist or Psychiatrist, but it does not mean they are "crazy." It may help you to find methods of coping!

In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability. It is recognized as a disabling condition by the ARTHRITIS FOUNDATION, THE SOCIAL SECURITY ADMINISTRATION and the MAYO CLINIC, among others.

This syndrome may strike life-long athletes as viciously as it does couch potatoes. It can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME
(Keep in mind that these things may apply to some, not all of fibro patients)

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 and very painful.

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

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.

My clumsiness - If I stomp 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.

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 try to understand if I must decline certain invitations, or go home suddenly. I really can't stand it.

My intolerance - Perhaps I can't stand heat, either, or humidity. I may sweat, profusely. Some people cannot sweat at all and so the heat is even more unbearable! 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.

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. Some days I may just feel like giving up. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

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. Every day stresses make my symptoms worse and can incapacitate me completely.

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 Irritable Bowel Syndrome and lose weight.

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.

My good days - If you see me smiling and functioning normally, don't assume I am well. I am having a good day but I am not cured. 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.

My uniqueness - Even those who suffer from FMS are not alike. That means not every fibro sufferer 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.
Posted on 05/12/11, 10:11 am
31 Replies | Most Recent Add Your Reply
Reminder: This is a support group for Fibromyalgia. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

You may also create your own Member Groups where you can moderate the discussion.
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Reply #1 - 05/12/11  10:11am
" SORRY THAT ITS LONG. "
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Reply #2 - 05/12/11  10:34am
" No, don't say that. It was very interesting and fun to read. The sad part is I can relate to everything written in it. I really need to get more tests and figure out whether I have Fibromyalgia or not. Everything I've been reading sounds exactly like what I have, including this. "
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Reply #3 - 05/12/11  10:42am
" Thank you for posting this. It helps me to understand what my friends on this site are going through a lot better. "
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Reply #4 - 05/12/11  10:45am
" I too, can relate to this. Sad but True... "
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Reply #5 - 05/12/11  10:49am
" This is so, so true, and all of it is important! Not long at all!
Having just learned this yesterday, every single thing has been a part of my life.
I am so glad this support group is here! "
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Reply #6 - 05/12/11  11:00am
" Thanks Nae! It's not too long ............. it's just right.

Hugs, Susan "
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Reply #7 - 05/12/11  11:21am
" THANKS GUYS "
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Reply #8 - 05/12/11  11:23am
" Have read various letters or statements of this type over the years. This one "hits the nail on the head" is what comes to mind for this old country boy. So many good points here.

I really liked the one where it said to put away the arthritis medicine. Having dealt with it for close to 30 years now, I have not only had my share of doctors (most were stumped), but the number or amateur docs has been unreal. If I had a nickel for each one of them, I could buy more than one gallon of gas these days.

As a person who depends on massage (have been weekly to the same massage therapist for nearly 13 years now), I completely know the value & benefit of massage. Sure glad you added that one, too.

Thanks for the post. "
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Reply #9 - 05/12/11  11:58am
" THANK YOU !!!

i'm printing this out and gonna make a bunch of copies. the first one is going to my husband ! "
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Reply #10 - 05/12/11  12:42pm
" This is one of the best of it's kind - direct and to the point without being "whiny" or asking for anything other than understanding.

Having said that, the best "cure" for most who misunderstand is to stop looking for our validation from the outside. We know the truth. It's important for a few people closest to us to know the truth. Other than that, who gives a shit what anyone else thinks?

It will be nice when more people understand, but in the meantime we need to stop caring so much about what ignorant people believe and seek our own truth. "

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