Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
HI EVERYONE HOPE YOU ALL HAVE SOME PAIN BREAK,,, IT POST HERE BEFORE A LITTER TO FRIEND EXPLAIN HOW WE FEEL AND EXPLAIN WHAT WE GO THROW ,,, IF ANY ONE HAVE THIS LITTER CAN POST IT AGAIN PLZZZ
A LETTER TO THE HEALTHY WORLD
FROM THE LAND OF CHRONIC PAIN AND FATIGUE
(sent to us by Avalon103)
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 fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, 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.
2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.
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 can not 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 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 don't 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 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 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. 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.
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 knot-filled. 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 of the over 10,000,000 people with FMS, but it 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.
The Dragon grins..
The doctor explains to me that I have a Dragon that has come to possess me. This Dragon is mean. This Dragon is deceiving and destructive. "But", the doctor says, "We can work at keeping this Dragon down."
"What is this Dragon's name?" I ask.
The doctor in his professional calmness says ,"The Dragon is FMS...Fibromyalgia Syndrome" The doctor explains to me ways we are going to keep him down. "Feed the Dragon some meds like Trazadone or Elavil. Do some light exercise , maybe the Dragon will get tired and leave you alone for a while."
I turn to leave and for the first time I see the Dragon. He looks at me with those evil yellow eyes, and the Dragon grins. I say to myself that Dragons can be slain. I read that in stories in school. The armor-clad knight slaying the Dragon and triumphantly returning to his town. As I am in this daydream the Dragon jumps on me. I wrestle with him. His hot breath sears my head. His roar makes my ears ring. He leaves me in a pile of flesh on the ground. I ache all over. Some parts of my body are painful to touch. I am exhausted as I pick myself back up again. The Dragon looks back to me-and the Dragon grins.
"I hate you, Dragon." I scream as he walks away. I feed the Dragon the medication prescribed. Slowly at first , then increasing a little as time goes by. I do begin a little exercise. I change some of my diet and increase the carbohydrates. I move about relatively pain free. And I say to myself "Maybe I have beaten the Dragon. Maybe the Dragon was only my imagination. I was just a little depressed and down, but now life is great."
I look to the sky and see dark clouds looming. A cold north wind begins to blow. I hear a thunderous pounding of foot steps. I have heard that sound while watching Jurassic Park, but now I'm not watching that movie. BOOM...BOOM...I don't see anything. BOOM...BOOM.. I panic and start to run. I don't know where to run ,but I run. The pounding gets closer and louder. I feel the hot breath on my neck. I dare not turn around as I try to run faster..faster. A claw grabs my shoulder. Searing hot pain rips down my back....staring upwards, terror runs through my body. And the Dragon grins.
The Dragon has returned! "You can't escape" the Dragon yells , "You are mine !!" I try to get up as the Dragon slams my body back to the ground. I can hardly stand the pain as he tortures me by stomping my hands. With his teeth he pulls at muscles in my back and legs. He burns my head with intense fiery breath. The battle is finally over. He stares at my crumpled body as I try to get focused on this beast. My eyes finally clear enough to see, and the Dragon grins.
Days pass. My fingers no longer work like they used to. My muscles feel like the second day of Olympic training, but the sensation does not leave. My head is not clear. I do not see well at night. Parts of me are cold and clammy. I am stiff. Why did the Dragon beat me so hard? When I try to sleep, the Dragon slaps me awake several times at night. Sometimes I am freezing. In bed I awaken drenched in sweat. It hurts to stand. It hurts to sit. My mind says one thing and my mouth says another. And the Dragon grins.
Sometimes I think I am in a nightmare and will someday wake up,the real me. I don't look sick, so why do I feel so bad? Friends and family laugh when I mess up on my words talking to them. I feel stupid looking in the refrigerator and not knowing why, or walking around in circles either not finding what I was after or forgetting what I was looking for. If I am driving at night and it starts to rain,the road disappears. And it is not uncommon to go somewhere and then make wrong turns coming back. My mind says right, my body turns left. I can go somewhere and not remember how I got there. I am not dumb, just not "connected" anymore.
Outwardly I laugh and play,but inside I have to cry sometimes.
And the Dragon grins.
By Ray White
These are great letters and i hope they give you what you need.
Letter to People without Chronic Pain
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.
Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy! I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
AUTHOR UNKNOWN
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TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.
5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.
6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.
12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.
AUTHOR UNKNOWN
by Terri Been
Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I
am now velcroed to you for life. Others around you can't see me or hear me,
but YOUR body feels me. I can attack you anywhere and anyhow I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you to
ache all over.
Remember when you and Energy ran around together and had fun?
I took Energy from you, and gave you Exhaustion. Try to have fun now! I
also took Good Sleep from you and, in its place, gave you Brain Fog. I can
make you tremble internally or make you feel cold or hot when everyone else
feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you
have something planned, or are looking forward to a great day, I can take
that away, too. You didn't ask for me. I chose you for various reasons:
That virus you had that you never recovered from, or that car accident,
or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!
I hear you're going to see a doctor who can get rid of me. I'm rolling
on the floor, laughing. Just try. You will have to go to many, many doctors
until you find one who can help you effectively. You will be put on pain pills,
sleeping pills, energy pills, told you are suffering from anxiety or depression,
given a TENs unit, get massaged, told if you just sleep and exercise properly I
will go away, told to think positively, poked, prodded, and MOST OF ALL, not
taken as seriously as you feel when you cry to the doctor how debilitating life
is every day.
Your family, friends and coworkers will all listen to you until they
just get tired of hearing about how I make you feel, and that I'm a debilitating
disease. Some of they will say things like "Oh, you are just having a bad day" or
"Well, remember, you can't do the things you use to do 20 YEARS ago", not
hearing that you said 20 DAYS ago. Some will just start talking behind your
back, while you slowly feel that you are losing your dignity trying to make them
understand, especially when you are in the middle of a conversation with a
"Normal" person, and can't remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already
found out...the ONLY place you will get any support and understanding in dealing
with me is with Other People With Fibromyalgia.
http://www.fibrowelcomepackage.com./
Having Fibromyalgia doesnt mean I stopped being human. Yes I might be a different person from the one you used to know but it doesnt mean I am any less of a person because of it.
I spend so much of my time in an awful lot of pain and I am constantly tired. I might not seem like I am much fun to spend time with and sometimes I would agree but I need people around me who understand. I still want to laugh; sometimes it just feels like there isnt much to laugh at when youre stuck inside a body that limits what you can do. Maybe I cant manage a night out any more but there is nothing to say I cant have a giggle on a night in.
Imagine the worst flu you have had, the misery you feel, the aching feeling that doesnt seem to go away, the sleepiness you feel from having a temperature, well thats how I feel most of the time. The difference is flu will get better, my Fibromyalgia wont.
I try and live my life being happy but to be happy doesnt mean my pain is any less or I am not absolutely shattered, all it means is on that day I am coping. Just because I might have been able to walk to the shop yesterday doesnt mean I can today. When I am on the sofa with my duvet its not because I am being lazy, its because I know that trying to go any where will result in more pain.
I know people care and I get that, I truly do but until you have walked a mile (or not as the case may be) in my shoes you can never understand and to be honest that makes me happy in a way as it means you are not suffering the way I am.
When you see someone who is using the disabled toilets or taking up a disabled seat on the bus and to you they look perfectly healthy, have some consideration that inside they might not be, just because you cant see Fibromyalgia doesnt mean its any less painful or debilitating.
Each day brings a different emotion, pain and battle, its constant and very hard work. A lot of the time I forget what I want to say, its frustrating having a conversation as I know what I want to say, I just sometimes forget the words, this is known as Fibro Fog. Your brain feels fuzzy, like you cant co-ordinate what it is you want to say or think. Sometimes I can get down the stairs without a struggle yet not manage to get back up them. Some days I cant even manage to get out of bed. Today is an ok kind of day, I have managed to type this much without it hurting my hands, and tomorrow I may struggle to type my own name.
What I need you to understand the most is that if you know someone who suffers with Fibro, dont compare them to me, each person who deals with this deals with their own emotions and physical disabilities differently. One person may have it more severe than the next. I also need you to understand that to say if only you got out more or try exercising isnt going to make me feel any better, in fact it often has the opposite effect, surely if I could do these things I would already be doing it. I dont enjoy spending my time housebound, if I could get out more I would but I know that on a good day I still have to be careful, if I over do it then it will only make a bad day worse.
Without meaning to sound ungrateful, please dont suggest a cure for this. I know there are many things out there on the market that claim to cure it but surely If these things worked my doctor would have me on it. I research Fibromyalgia to death, not to find a cure but to see what works for others to help them manage their pain and get through the day, so chances are if you are suggesting it to me I have probably already tried it. That doesnt mean I dont want your help but that help can come from trying to understand everything I have asked rather than becoming my own personal doctor.
If you miss the old me then spare a thought for how I am feeling. I miss my old life, I miss being able to dance with my husband and do things with my family and friends without hurting so bad I want to cry. I miss being able to play in the park with my grandkids at a moments notice. I miss being able to stay up late into the night just talking. I just have to learn to adapt to the things I can do now, if I have to do this then it would be nice if you could do the same. Accept me for who I am now rather than who you wished I could be.
I know to ask all this from you is hard but this is how my life needs to be now. If you cant do what I ask then I understand but the new me needs to have people around that can, thats not saying I dont want to lose friends or family, its just that if I start surrounding myself with people who do, dont think its that I love you any less.
Thank you for taking the time to listen to me. Please understand
I thank God I found you guys! Praying for ALL of you!