When you are in constant pain it is often difficult to see the beauty in life
Fibromyalgia and other chronic pain conditions can be difficult to understand, especially when someone you love is the one who suffers from the condition.
You can not just look at a person with Fibromyalgia or other Chronic pain and see that they are suffering from a Chronic disease process. There is no way to tell just by looking at them just how much pain they are really in.
Family and friends may not believe that the person who suffers from Fibromyalgia or other chronic pain condition is really sick. They often think that the person who suffers from these disease conditions is just to sensitive, or has a low pain threshold or are faking the condition.
It is hard for people who do not suffer from Fibromyalgia or other Chronic pain conditions to understand just what the sufferer goes through on a day to day basis.
Read on and I will try to help you understand, these are the tools you will need to hopefully understand what it is like and how you may be able to help the sufferer
* Caring spirit
* Ability to be non-judgmental
* empathy not sympathy, we do not need your sympathy!
* Understanding that some days we just can not keep up with our or your plans.
Fibromyalgia and other Chronic pain conditions
may not be life threatening, but they are life stopping!
Fibromyalgia steals more than just relationships …
causes more than just pain …
It steals lives, one day at a time …
everyday activities like taking the family dog for a walk can become impossible!
Simple things like taking the family dog for a daily walk can become impossible when you are faced with chronic pain … Each and every day we are alive is a day with pain
Daily pain wears the body down…
pain reduces energy…
reduced energy diminishes quality of life,
When you are in constant pain it is not only we who suffer…
but our family’s as well.
Every day we are in pain is a day our world shrinks a little at a time.
Our co-workers may notice we are not as attentive as before and may even begin to gossip about what they think may be going on in our lives
Others may see us as scatter brained, inattentive, or wonder if we are drinking,
Fibro-fog steals the most important thing… Our ability to think and communicate.
We loose words all the time, the phrase “it is on the tip of my tongue” was ment for fibromyalgia sufferers …
it had to be… because we live it daily.
People think we seem distracted, slow or unable to perform our jobs because…
we miss things, that we would otherwise not miss.
This distraction may be due to the “fibro-fog or simply the pain!
If you are a supervisor and have Fibromyalgia, it is even worse because employees chat about if they think that you are drinking during your breaks because your speech may be slurred, or you may appear inattentive.
Just like a puppy in a cage, our bodies betray us and we sometimes stumble and fall
Our world gets just that much smaller
we lose our identity, independance, zest for life! Our world shrinks on a daily basis.
We can’t work, so we then find that we must fight to go on disability because we loose our jobs …
Again our world shrinks.
We experience fatigue, we can’t get around like we used to … our world shrinks.
We loose our independence and may need to depend on others … our world shrinks.
we want to spend time with our familys and our children
but we are tied down by our fatigue, our pain …
Our children want us to come play with them, our husbands want our time and our attention, our family can’t understand what is wrong with us…
we look just fine… but inside we are not fine!
Loved ones want to help but are frustrated,
they see us in pain and can do nothing …
Our outside friends and family members may not believe we are sick …
Our children do not understand why we can not attend events with them …
Our relationships with our husband/wife and children suffers …
We experience financial hardhsip as we fight for disability income …
Financial burdeons worry us as the medical bills mount with no end or answers in sight!
Living with Chronic pain can make us angry
The pain makes us angry, tired and miserable. We may lash out at loved ones…
We don’t understand what is happening to us before we are diagnosed, and may become angry and lash out at those we love the most
Fibromyalgia and Chronic pain is about losses
We often try to hide how we feel, this causes isolation
Which only makes us angry and miserable.
Our family and friends don’t know how to deal with us anymore
We loose friends, family doesn’t understand, relationships suffer
Even a touch from a loved one causes pain
Even a gentle touch from a loved one causes pain… making us seem unavailable to our familys.
Our world gets ever smaller…
It hurts to sit …
it hurts to stand …
even a loving hug can cause pain …
We try to hide just how bad we feel, it may even work for a while, but sooner or later the pain catches up …
Then it just takes over…
Children end up having to take on some adult responsibilities
Our children end up doing some of the household chores that we once did.
Our children can’t understand why we can not do the things that their friends mom’s or dads can do.
Our family’s and our children adapt, they try to help around the house to make us feel better.
This makes us feel guilty for our pain, so we try harder to hide it, from our loved ones and from ourselves…
We often try to hide our pain, this only makes the pain worse!
My son’s were wonderful about being quiet or bringing me ice when I had a really bad day.
Deep down inside though, I felt like I was letting them down.
I was no longer the wife and mother that I wanted to be…
I became someone else… someone I did not like at all
I became the embodiement of PAIN
Pain steals our lives
We are in constant pain, we try to hide it, we deny it,
but there it is… it steals our life…
How can we help but be depressed!
Like it or not, Depression steals even more of our lives!
Depression did not CAUSE our pain, rather depression is caused BY our pain.
Some doctors still hang on to the myth that we are depressed and that is what causes the pain,
or worse yet, they tell us that we need counseling, not medical treatment, to deal with our depression and not the pain.
Depression IS caused by the pain, but depression still needs to be addressed.
We may deny the depression
But how can you help but be depressed when every waking moment of your life you are in pain!
Sleep deprivation or improper sleep is common with fibromyalgia
Sleep eludes us for the pain, then fatigue becomes mind numbing,
and then finally sleep finally takes over… our lives!
Then there’s the fatigue …Endless mind numbing fatigue…
We become so tired, but we can not sleep for the pain
then it finally catches up to us, and we sleep for days
We feel tired all the time
Again our friends and family may try to understand
but they too fight the frustration and anger, when we can not do what we were supposed to do …
Plans get put on hold because we are too tired to go on that trip
Our children count on us to watch them play at the big game, but we just don’t have the strength…
Our jobs suffer Our family’s suffer Our lives suffer
Many of us suffer from undiagnosed sleep disorders,
Sleep apnea is a common problem for those of us with Fibromyalgia
Ask your doctor for a sleep study!
Sleep apnea and other sleep disorders are common and they are treatable
Sleep apnea is often treated with a CPAP or BIPAP device that the sufferer must wear every time they try to sleep.
Sleep apnea is common in sufferers of Fibromyalgia and other Chronic Pain conditions.
Sleep apnea can be either obstructive, which means that the airways close up during sleep, or Central when the brain forgets to tell the lungs to breathe.
Sleep apnea is diagnosed by a sleep study and usually treated with a CPAP device.
CPAP therapy is difficult to learn to live with, you wear a mask at night while pressurized air is pushed through a piece of tubing and into the mask to keep your airway open while you sleep. The device is noisy and can blow air on your spouse during the night.
This usually causes the spouse to feel resentful and try to urge you to not use your device at night so that they can get some sleep.
This can cause a further strain on relationships as the couple struggles to cope with yet another health related issue.
Then there is the dizzyness
many of us suffer with episodes of true vertigo
yes, the room really does spin!
True Vertigo is when the room really spins, you loose your balance,
and find it impossible to walk without falling due to the constant motion of objects around you.
Dizziness or true Vertigo are often common problems
Yes, the room really does spin!!! No, I am not kidding here,
Dizziness is common with Fibromyalgia but no one can really explain why.
Dizziness can range from a simple feeling of movement that may or may not be followed by nausea and vomiting.
Sometimes it is only a sensation of movement or seeing movement out of the corner of your eye,
you see movement but when you go to look for it and it is gone…
But for some of us, myself included… it is typically true vertigo.
The room spins when you tilt your head a certain way.
This causes severe balance issues as well as nausea and vomiting.
It can last from a few hours to days at a time!
The sufferers doctor may prescribe Meclizine to help reduce the symptoms and make life bearable till the bout passes
Your balance is affected, you stumble and fall frequently,
you may find that you try to avoid public places so that others do not see you fall
Balance issues can be the worst thing to consider when dealing with Fibromyalgia.
You wobble when you walk. If I never hear another Weeble joke…
you find yourself bumping into door frames, stumble over your own feet, etc.,
People think you have been drinking or are drunk due to the way you walk…
You can’t help it, and so you become acutely conscious of how you walk, especially when out in public.
If you use a cane to assist you, you may find that sometimes it is not where you think it is and you fall.
People look at you, and again think you are drunk.
Stories about what you may be doing begin to be the latest gossip around town
You become more self conscious so, your world shrinks!
You become more self conscious, your world shrinks as you begin to avoid being in public when you are having problems with how you walk to avoid the embarrassment… and the questions…
Migraine headaches become a way of life
Even if you have never suffered from them before frequent Migraine Headaches may become a way of life
Migraines can be brought on my tight painful muscles that restrict the blood supply, often called tension headaches.
Migraines can come on for a variety of reasons, but with Fibromyalgia and chronic pain sufferers ,the Migraines may be brought on by the muscles in the neck and shoulders being in a constant state of spasm.
In this case pain begets more pain!
Migraine Headaches can also be caused by warmer weather, which for me is frequently the case.
I tried to talk to my doctor about it but he is unsympathetic and feels that since I deal with them by staying in bed with ice packs, then I am ok… remind me that I need to find a different doctor!!!
So Again your world shrinks …
Optic Migraines are the scariest!
I have episodes when I see a multi-colored lightning bolt shoot through my field of vision, usually in my left eye. When this happens the lightning is the only thing I can see with that eye!
I close my eyes and it still see it!
It usually lasts from a few minutes to a half hour and leaves me feeling nauseous, dizzy, and out of sorts for the rest of the day.
I certainly can not drive when this happens….
my world is further reduced as I am again forced to depend on someone else to do my shopping, and errands for me….
Living daily with Fibromyalgia is about living with losses…
loss of freedom, loss of employment, loss of friendships when friends don’t understand, loss of relationships, but worst of all is the loss of independance
Then there are the strange sensations that only you feel!
You feel like someone is poking you repetidly
Sometimes, you look at the muscle and actually see it in spasm, Now that is truely strange!
it pops up and down and is a very strange sight to see…
Or you suddenly feel like someone has sprinkled you with Ice Water, but there is no ice water…
These sudden intense muscle spasms can become quite a bother when you go to reach for something and your hand or arm jumps… You have no idea how many times I have flung my french fries or even once a hamburger out the window of the car, when my arm or hand jerked at an unexpected time!
Again, when this happens, people stare…
You become nervous in public
again your world gets smaller…
The real CREEPY CRAWLY sensations can be the worst.
If you suffer from Fibromyalgia or another Chronic Pain condition you may suffer from crawling, tingling, burning, or other sensations in the skin or under the skin.
I have one spot on my left shoulder blade that always feels like there are bugs moving around just under the skin. sometimes these crawling sensations are maddening… I am constantly asking my spouse to scratch there and also if he sees anything moving around under the skin. Of course there are no bugs there
It has been years since this started yet I still ask, even though I know the answer is NO!…
Sometimes it feels like someone is touching you when no one is around.
Sometimes you feel like you have an intense sunburn and your skin is painful when your clothes touch, but again there is nothing there…
Dealing with Fibromyalgia or another Chronic Pain Conditions on a day to day basis makes you feel trapped, isolated, and alone!
There are 18 identified Pressure points in Fibromyalgia
There are 18 recognised pressure points in Fibromyalgia. For a diagnosis of Fibromyalgia sufferers have to be only identified with 11 of these. Fibromyalgia is no longer considered a “catch all” disease for when nothing else fits.
Finally the medical community is begining to see that this is a real disease process and not “all in our heads”.
Some doctors finally recognise the fact that Fibromyalgia causes painful knotted muscles and some have even realised that you can FEEL the knots in the muscles!
There are some doctors now who will actually look for these knots in the muscles to help identify those patients who may have Fibromyalgia.
Finally there is a finally definaitave criteria set for the diagnosis of Fibromyalgia.
Doctors can apply pressure to these trigger points (excruciatingly painful for the sufferer) and if the patient tests positive (thats expressing pain) in at least 11 of the 18 recognised pressure points then that is proof positive that the patient suffers from Fibromyalgia.
Finally there is a set criteria for a diagnosis of Fibromyalgia
My diagnosis took 7 years, because my previous doctors did not believe that Fibromyalgia was a real disease process even though the AMA recognises it as such!
Fibromyalgia makes your world smaller,
until you feel like you are the only one who suffers!
Finally there is hope for Fibromyalgia sufferers.
Doctors are begining to understand the disease and how to identify it.
Medications are being approved by the FDA for the treatment of Fibromyalgia such as Lyrica.
* We are not lazy, simply fatigued
* We ARE in REAL pain
* This is a REAL disease condition
* Yes, some people have it and still function, Fibromyalgia and other chronic pain conditions are different for different people. For some it becomes debilitating and others a mild inconvenience
* Strong relationships based on loving communication seem to stay together, while other relationships do not.
* Fibromyalgia and other Chronic pain conditions often cause the loss of relationships.
* Communication is the key to holding on to loved ones, talk to them, tell them how you feel, try to make them understand you still love and care for them.