How can you say that, when you do not know?

How can u say you are my brother, my sister/my friend and you are not able to look in my face and see my PAIN? How can you claim to love me, when u don't even know me. If we are a part of the body of Christ, and I am the toe, YOU should feel my pain, even if you are the finger.

It is impossible to a part of the Body and not feel what another feels. How can you NOT hear me when I cry, when my face is stained with a permanent streak of tears? How can you claim to love me, when you approach me and I won't let you hug me, because even HUGS HURT ME?

How can you tell me to Pray, when YOU have not prayed for me knowing it is hard for me to even get on my KNEES, how can you tell me to EXERCISE, when I can barely WALK, how can you tell me to buy VITAMINS or SUPPLEMENTS when my job has been REPLACED by handouts.

How CAN you tell me to eat healthier, when I can't stand long enough to COOK and going out is a Luxury I no longer can afford. How CAN you tell me to take a NAP and I will feel better, when I have been up for 5 days STRAIGHT?

How DARE you tell me I dont LOOK sick when you know NOT what I feel.... for you see, Jesus is the ONLY one who is acquainted with THIS pain, unless you have this, you will never understand this...

Not I am not one weak in my faith, I am using my FAITH to FIGHT this, whereas you my friend, my sister, my brother, you are STILL taking high blood pressure medication, you are still taking insulin SHOTS, you are still taking (___________________) You don't look like you have High blood pressure? You don't look like you have HIV... don't judge me unless you KNOW me.

Sometimes God ALLOWS things like Fibromyalgia to come along to pull ONE closer upon His BREAST where we may feast on the nourishing WORD that is needed to LIVE that you should have gave~

10 Things "NOT" To Say To Someone Who Has Fibromyalgia

The following was written by Pam Ryan. Those with Fibromyalgia and Chronic Fatigue Syndrome will nod their head in agreement and a well-known understanding. Those who do not understand, will be wiser.


"10 THINGS "NOT" TO SAY TO SOMEONE WHO HAS FIBROMYALGIA...
by Pam Scott-Ryan

10. We all get more aches and pains as we get older.

The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn't hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.

9. I think I have that, too – I'm always tired.

This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are like someone pulled your plug, cutting of your source of power. It's kind of like taking the batteries out of the Energizer bunny.

8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.

Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but they suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn't work well enough to allow you to consistently work a 40-hour week. And it doesn't help dispel the extreme fatigue that usually accompanies FM.

7. My doctor says fibromyalgia isn't a real disease; it's just a wastebasket diagnosis.

First of all, this doctor obviously hasn't kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don't approve medications for imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can't figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.

6. If you got more sleep, you'd feel better.

Well, duh! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep you need.

5. I read about this new product that cures fibromyalgia.

This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently some kind of “natural” supplement being sold through a multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it's someone closer to me who is likely to keep asking if I've tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can't afford to try them all. Read Let the Buyer Beware for tips on how to evaluate product claims.

4. At least it's not fatal.

My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I'd know there was an end to the pain.” I rarely say that, though. Of course I'm glad it's not fatal. But that doesn't help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I'm thinking when someone makes this comment. At least it might get their attention.

3. You just need to exercise more.

Often this is another way of insinuating that you're lazy. This comment in particular has always bugged me. Perhaps it's because I used to be a dancer and aerobics instructor. If more exercise were the answer, I'd be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it's only one part and it has to be approached slowly and carefully to avoid triggering a flare. Read Fibromyalgia and Exercise for more information on how to incorporate exercise into your FM treatment plan.

2. But you don't look sick.

This comment puts the FM patient between the proverbial rock and hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don't want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we're sick. If you think about it, most chronic illnesses are invisible. My dad had heart disease but looked great until the moment he died from a massive heart attack. My mom had pancreatic cancer but looked fine. She didn't even know anything was wrong until it was too far gone to treat. She didn't “look sick” until the last couple of weeks of her life when she was confined to bed. Just because someone doesn't have visible sores or a crippling deformity doesn't mean there's not a serious illness just under the surface.

Finally - the number one thing you should NOT say to a fibromyalgia patient:

1. It's all in your head.

This is the all-time worst and most insulting thing you can say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You're right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said."

I hope this article allows you to think before you comment. Fibromyalgia and Chronic Fatigue Syndrome are real diseases. Although the person looks like there is nothing wrong, if you watch, you will notice how they gingerly stand from a sitting position or lower themselves into a chair. You will notice periodically that they substitute a word for another. Their cognitive process works as if the electricity can't get through the line without interruption. Their balance is not as good as it once was. They have trouble lifting a ten pound bag of potatoes. They are always physically and mentally tired. Be observant of your friends with Chronic Diseases, including Fibromyalgia and Chronic Fatigue Syndrome. Your friendship with be better for it.

You can .... be of help to those with Chronic Diseases, ask how

You can .... explain your Chronic symptoms to your friends. If you are like me, you will cry while explaining.

You can .... take a nap today .... do it!

The Butterfly Theory

THE BUTTERFLY THEORY:
Just as the Caterpillar one day had to experience change, had not the Butterfly that was within Embrace that which was to be taking place and Confront the fact that her life was changine and was moving from a slow state to one of freedom and flight, the Butterfly began to Embrace the Change that she needed to Confront, and Challenge the Change in order to Conquer it. Although the Butterfly, just like those afflicted by Fibromyalgia, experienced pain and agony as her body began to take on a new life, things began to change from within, she no longer could crawl with caterpillars, for she now has Wings, Wings of hope, Wings of change, Wings to soar. If life has brought pain to your door and invaded your body, pushing you OUT, EMBRACE the Change, Face and Challenge it, so you may Soar~ Soar high, Soar Fly, Soar Free, my beautiful Fibro~<3~Butterfly, Soar~ @ Veronica Moore

More travel tips

If you are like me, having been diagnosed with one of those "Invisible" disease of the which I am debating as to whether it is invisible or not, because anyone with eyes can look upon the face of one in Debilitating Pain and SEE, the PAIN. Perhaps you have those invisible friends, your other friends cannot see: the "Fibromonster" and her sidekick, "Allodynia", In preparing to travel or just to go to the grocery store I find I needed to take special precautions and measures to ensure that I could (1) keep up (2) Avoid a flairup and the Fog (3) Avoid a major case of uncontrollable pain and fatigue on the journey between point A and B of my trip. It's no easy task and it takes planning and care to manage.

I want to share some tidbits and tips to managing a busy exciting, refreshing and relaxing vacation, without the twins (Fibromonster and Allodynia). Now of course all of us are unique and our diseases are different in the way they manifest in each of our bodies so this is general information that you can tailor to meet your own needs. I'm am all for the easy straight route to the solution of whatever may arise.

(1) MAKE SURE YOU HAVE ENOUGH OF YOUR MEDICATION ON HAND. Plan ahead and be sure that you even take a extra "just in case". You never know if weather or transportation, flat tires, dead batteries, a missed flight, will be a problem and cause a delay in your travel plans. ALWAYS TAKE EXTRA.

Also, NEVER take whole bottle of prescription medications, unless they are your NARCOTICS. Save some smaller old RX bottles or purchase the small plastic baggies (in the pharmacy dept) and transfer what you need and leave the rest at home. That way if there is a situation where meds are lost, you still have some when you return home. Check out the weather channel before you head out, if you are headed for the Gulf coast, are you going during Hurricane season, are you going through the Tornado valley, are you headed toward a place where there is a chance of being snowed or flooded in.

2.) Take extra comfort measures, for example ointments for pain relief, instant cold packs, ThermaCare Heat Wraps or whatever is your preference. There are a variety of wraps for different areas of the body and the heating mechanisms last for a good 8 hours and sometimes more.
Another comfort measure I take is a really good and comfortable pillow and/or blanket that I use at home. (Or purchase an extra one like the one you use at home) For me, this saves A LOT of headache, neck ache and frustration. Having the "right" pillow or blanket while on vacation can make things go much smoother for you and really, it only takes up a little extra space.
Take along extra over the counter medications that will help you feel better on your trip. Who wants the hassle of the ever present overactive stomach, bladder, headaches, muscle tension...etc without an immediate and reachable "buddy" to help you out?

Here's a few favorites from my list, and many others in my Therapy Bag:
A) chewable Pepto-Bismol tablets (or generic version)
B) Dulcolax stool softener (or generic version)
C) Excedrine Migraine (or generic version)
D) chewable vitamin C.
E)Arnica for muscle pain. (You can find it in most health food stores such as Sprouts)
F) chewable Junior Tylenol for the kids. (or generic version)
G) Uristat or a similar remedy for a urinary tract infections (*or take cranberry supplements with you for a daily dose to maintain a natural balance in the body)
H) Band-aids of all sizes AND Friction Block stick by Band-aid. (This product is AWESOME for your feet! I keep mine in my purse to keep my feet from blistering.)
I) Imitrex for Migraine
J)Softee Socks
K)Softee Gloves
L)Knuckles
M)Softee slippers
N)Cool eye pad
O)Favorite music
P)Favorite book
Q) Journal
R)TherapyCow, (my most favorite heating pad)
S)StressFree Bath and Lotion Toiletry items

Some other "buddies" to consider are: anti-nausea medication, motion sickness help, ear plugs, extra eye glasses or sunshades, anti-snoring helps, contact lens cleaners/re-wetting drops, sinus medications, allergy medications, etc...

Keep your "buddies" in an accessible place/bag that is near to you either on the plane or in the vehicle. It takes a lot of stress away when you know help & comfort is an arms length away. It's worth it to have things on hand that you don't have to worry about going out and finding later or when you're in a bind. Get travel sizes and minis so that you're not stuck with tons of bottles and boxes taking up huge amounts of space or putting a dent in your wallet. There are all kinds of inexpensive organizers out there that can easily accommodate a nice little portable way to keep everything easily accessible and manageable.

Keep your clothing and shoe choices realistic with your activity level and body pain management. If you know you're going to need more comfy clothes rather than dressy restrictive clothing, then find stylish but comfortable clothing and shoes to take with you. You know best your limitations. I personally take 3-4 outfits that are super comfy and stretchy because there are days when I need to wear soft and stretchy clothing that I don't necessarily need to button or zip or that allows my muscles to relax. Sometimes a pair of Capris, shorts or sweats and a soft cotton T-shirt paired with tennis-shoes or no heel shoes are just right. The key is to dress in a way that works for pain management but still makes you feel good about yourself so that you can relax and make the most each day and activity. Remember one of my favorite sayings: "Fight for your quality of life!"...

(3) Don't allow yourself to rush, be push too hard, or take on more that you can handle. Remember to listen to your body, when it tells you to stop and rest. Fibromyalgia and the twins: Fibromonster and Allodynia is hard enough to deal with. You have it/them, period. If other's can't or won't accept it, do what you have to do to make your trip comfortable. You may have to pass that game of volleyball or the walk on the beach, but the truth is, you made it as far as you did, remember you have to get back home.

So what about your travel tips and hints, do you have any to share? Post some of them here for all of us to read and take advantage of. I'm always looking for good ideas and suggestions to make fighting for my quality of life a little easier.
you ARE NOT alone. Don't suffer in silence. Find ways to reach out and connect with others who are going through what you are going through. There is strength to be found in the understanding of another who shares your situation. (((HUG)))

Have a blessed, stressfree, flare free, safe trip and by all means, have fun!

10 tips for travelling

I thought this was pretty useful since I am doing a lot of travelling now. TOP 10 TIPS FOR TRAVELLING WITH FIBRO

1.Give yourself ample time to plan and pack. Try to be packed a week before your departure. Work out what the specific problems associated with travelling are going to be for you, whether it’s sitting still, needing a toilet frequently or having to walk long distances in an airport.

2.Ask for and accept help. It’s all very well being independent, but if it means you arrive at your destination in a major flare, it’s unlikely to be worth it. If you need a wheelchair to get on the plane ask for it, if you think you will be doing a lot of walking, talk a cane, it will help.

3.Try and be in the best shape possible physically before you even start, get a good night sleep, drink extra water and eat more fruits and veggies.

4.Have a portable travel medications pack. Try not to check your meds with your luggage, or pack them in the bottom of your suitcase, keep them on you or in your carryon.

5.Take travel supplies of pain relieving products, such as TENS unit, tennis balls, inflatable beach ball....

6.Take your own easy to open and digest snacks and water, don't forget antinausea meds.

7. Choose your clothes and shoes wisely so that you can dress comfortably.

8.Take comfort items, such as your favorite blanket and travel pillow, heating pads, temporary icepacks.

9.Choose your seating position in the vehicle, whether it is a car, train or ‘plane, so as to make it as easy as possible for you.

10.Stretch and take plenty of breaks.

Don't forget to relax, take it easy and enjoy yourself. Take it one step at a time. The whole point of preparing for a journey when you have Fibro is to make it easier for you, not to stress

http://www.poodwaddle.com/clocks/worldclock/

Info for research

Where Can People Get More Information About Fibromyalgia?

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health

1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484
Toll Free: 877-22-NIAMS (877-226-4267)
TTY: 301-565-2966
Fax: 301-718-6366
Email: NIAMSinfo@mail.nih.gov
Website: http://www.niams.nih.gov

National Center for Complementary and Alternative Medicine
National Institutes of Health

P.O. Box 7923
Gaithersburg, MD 20898
Phone: 301-519-3153
Toll Free: 888-644-6226
TTY: 866-464-3615
Fax: 866-464-3616
Email: info@nccam.nih.gov
Website: http://nccam.nih.gov

Social Security Administration

6401 Security Boulevard
Baltimore, MD 21235
Toll Free: 800-772-1213
TTY: 800-325-0778
Website: http://www.ssa.gov/disability

American College of Rheumatology (ACR)

2200 Lake Boulevard NE
Atlanta, GA 30319
Phone: 404-633-3777
Fax: 404-633-1870
Website: http://www.rheumatology.org

Advocates for Fibromyalgia Funding, Treatment, Education, and Research

P.O. Box 768
Libertyville, IL 60048-0766
Phone: 847-362-7807
Fax: 847-680-3922
Email: info@affter.org
Website: http://www.affter.org

Fibromyalgia Network

P.O. Box 31750
Tucson, AZ 85751-1750
Phone: 520-290-5508
Toll Free: 800-853-2929
Fax: 520-290-5550
Website: http://www.fmnetnews.com

National Fibromyalgia Association

2121 S. Towne Centre Place, Suite 300
Anaheim, CA 92806
Phone: 714-921-0150
Fax: 714-921-6920
Email: nfa@fmaware.org
Website: http://www.fmaware.org

National Fibromyalgia Partnership, Inc.

P.O. Box 160
Linden, VA 22642-0160
Toll Free: 866-725-4404
TTY: 866-666-2727 (free of charge) or 540-622-2998
Email: mail@fmpartnership.org
Website: http://www.fmpartnership.org

Arthritis Foundation

P.O. Box 7669
Atlanta, GA 30357-0669
Phone: 404-872-7100
Toll Free: 800-283-7800
Website: http://www.arthritis.org

Key Words

Adrenal glands. A pair of endocrine glands located on the surface of the kidneys. The adrenal glands produce corticosteroid hormones such as cortisol, aldosterone, and the reproductive hormones.

Analgesic. A medication or treatment that relieves pain.

Arthritis. Literally means joint inflammation, but is often used to indicate a group of more than 100 rheumatic diseases. These diseases affect not only the joints but also other connective tissues of the body, including important supporting structures such as muscles, tendons, and ligaments, as well as the protective covering of internal organs.

Chronic disease. An illness that lasts for a long time, often a lifetime.

Connective tissue. The supporting framework of the body and its internal organs.

Cortisol. A hormone produced by the adrenal cortex, important for normal carbohydrate metabolism and for a healthy response to stress.

Fibromyalgia. A chronic syndrome that causes pain and stiffness throughout the connective tissues that support and move the bones and joints. Pain and localized tender points occur in the muscles, particularly those that support the neck, spine, shoulders, and hips. The disorder includes widespread pain, fatigue, and sleep disturbances.

Fibrous capsule. A tough wrapping of tendons and ligaments that surrounds the joint.

Inflammation. A characteristic reaction of tissues to injury or disease. It is marked by four signs: swelling, redness, heat, and pain. Inflammation is not a symptom of fibromyalgia.

Joint. A junction where two bones meet. Most joints are composed of cartilage, joint space, fibrous capsule, synovium, and ligaments.

Ligaments. Bands of cordlike tissue that connect bone to bone.

Muscle. A structure composed of bundles of specialized cells that, when stimulated by nerve impulses, contract and produce movement.

Nonsteroidal anti-inflammatory drugs (NSAIDs). A group of drugs, such as aspirin and aspirin-like drugs, used to reduce inflammation that causes joint pain, stiffness, and swelling.

Pituitary gland. A pea-sized gland attached beneath the hypothalamus at the base of the skull that secretes many hormones essential to bodily functioning. The secretion of pituitary hormones is regulated by chemicals produced in the hypothalamus.

Sleep disorder. A disorder in which a person has difficulty achieving restful, restorative sleep. In addition to other symptoms, people with fibromyalgia usually have a sleep disorder.

Tender points. Specific places on the body where a person with fibromyalgia feels pain in response to slight pressure.

Tendons. Fibrous cords that connect muscle to bone.

Sitting in my Purple Room

Sometimes in life we find ourselves sitting in our rooms with nothing to do, nowhere to go, no one to talk to, no one to understand, everything has changed around us and people expect you to recover with a tylenol, Tramadol, Vicodin or antidepressants, some exercise, more prayer or by taking vitamins. They want you to PUSH yourself to get up because NO body can sleep, whine, complain THAT much about pain. But for me, for the millions like me who have been stripped of life, to live looking out the door of their room, it is so.

Our get up and go has gone, our crystal clear thoughts and quick decisions that we once made is now clouded by the FOG and a memory deficit that comes at lib. We wonder, we search, we hope, we pray for the cure, yet we go unheard. Friends abandon us and those who remain, we find ourselves always telling them about the Monster that has moved in, the HOME INVADER, the VICIOUS INTRUDER called Pain. The creature who stole life and livelyhood, dreams and jobs, careers and schooling, the monster that stole my childs mother, my husbands wife or vise versa.... the creature which cannot be seen, but if given a closer look, you can see the Invisible Monster is anything but, just look at our faces and you will see the residue of pain, or in the way we sit, or sit ever so easily, the way we grimace or moan just silently enough so as not to disturb you.

You will see we have withdrawn, we don't attend any functions and if we do, it is days before we surface again afterwards. We don't complain, because family and friends have told us we complain too much or that we don't LOOK sick... So we retreat, we take refuge in our room and look for the cure, look for hope, look for an answer, we look for YOU. One who claimed their undying love for us, that like Peter, when our life hit the place of Gethsemane we find, yet through it all, we sit in our room, our purple room, alone and looking, in pain, in the FOG with questions no one can answer....