A lot of people may not know about it because I don't talk about it a lot, but I live every day in constant pain.
Some days are better than others, some days I feel like I have been hit by several 18-wheelers, big dump trucks, over-size load trucks, etc ... in succession ... like I'm on one of those caravel game things with the thing that pops you right back up just in time for the next impact to happen.
My story - short version - is that when I was 16, I got sick with strep and didn't know. I thought it might be strep but by that time I was hours away from home spending time with my best friend and her family for Christmas. We were down there for a week. By the time I got home, I could NOT swallow, it hurt to breathe... and I had a high fever. It's suspected that I also developed Rheumatic Fever.
Rheumatic fever is an inflammatory disease that can develop as a complication of inadequately treated strep throat or scarlet fever. Strep throat and scarlet fever are caused by an infection with group A streptococcus bacteria.
They suspected this when I was 25 and it was discovered that I had a heart murmur, which has now (over ten years later) turned into a major thing.
But I went in and was treated for the severe strep throat ... and it took awhile to go away, but I never really felt better. I got to the point where I could swallow again and breathe without pain but I was still run down, feverish, tired, nauseated, just a gambit of symptoms.
So my mom took me back in... they retested me for strep, it was negative. Based on my symptoms, they tested me for Mono ... and it was positive.
Infectious mononucleosis (mono) is often called the kissing disease. The virus that causes mono is transmitted through saliva, so you can get it through kissing, but you can also be exposed through a cough or sneeze, or by sharing a glass or food utensils with someone who has mono. However, mononucleosis isn't as contagious as some infections, such as the common cold.
It took MONTHS for my symptoms to ease up. I could only attend school for a few hours. One afternoon when I managed to actually make it to my English class, my teacher and I were talking and I was telling her what was going on ... and she - at one point - mentioned that she had just read an article about a new illness called Chronic Fatigue Syndrome, and what I was describing sounded
JUST LIKE THAT ....
So I relayed the information to my Mom. She apparently went into Mom-Warrior Mode (a mode I now know very well) and did what she needed to do to get me into someone. We ended up at a Mayo Medical Center (in Rochester, MN) and after a bunch of testing and keeping a daily diary of my symptoms - I was sure enough - diagnosed with CFS. If it weren't for my English Teacher, we may have never heard of it.
For the next several years, things slowly eased up ... or more so I just learned how to deal with the pain. The only option the DR had given me was over the counter pain meds (don't help) and steroids. I was 16, I wasn't willing to go on steroids.
We tried vitamin treatments. Didn't really help.
So I just didn't have a choice. I just had to deal with it. So I did. It took me longer to graduate high school, a year and a half longer. I was supposed to and on track to graduate June 1994, but I didn't actually graduate until December 1995 - two weeks before I gave birth to my first child.
Pregnancy, gave me a slew of problems, but funny enough seemed to ease up the constant pain I live in.
So I liked being pregnant, even though I was sick in other ways.
Things were better after becoming a mom for the first time. But after having my second child, it was like everything came rushing back with a vengeance. I was a single mom (basically) for awhile. Taking care of a new born baby with special needs, and a child with ADHD. I ended up becoming a hermit. I fed my kids, did all the things I needed to do for them, basic care, etc... but it was about all I could do. The baby and I were constantly in my bed, and just after his 1st birthday, my ankle swelled up three times or more it's normal size. It was slightly smaller in width than a 2 liter soda bottle. There was no explanation for it. I didn't hurt it. I didn't twist it. There was no injury to it. The doctors wanted to stick needles in it to drain fluid but after crying for an hour in the office because of my anxiety and fear of needles, I couldn't consent.
And just like it magically appeared, it magically disappeared about a month later.
It took a few years, but things seemed to be on an upswing again too.
Fast forward to about 2 years ago.... things started going down hill. Last summer I could barely get out of bed. Took a lot of talking myself into it.
Everyday I have the following symptoms - some days are definitely worse than others.
- Tired - just bone tired
- Major joint pain - specially in those joints that are used a lot - hips, knees, ankles, feet, hands, shoulders, neck ...
- Headache
- Confusion (even I notice it)
- Concentration... (lack there of) Brain Fog ... I find myself unable to say what I think or think of what I want to say
- Muscle Pain/Heaviness .... Just feeling like EVERYTHING HURTS ... even your EYEBALLS sometimes.... and the arm and leg heaviness.
- Dizziness/Fainting.... I am always dizzy, sometimes I get tunnel vision, and I think I fainted in the shower recently, I fell but I don't really remember - I could have slipped, I just don't know.
- I am either too hot or too cold and can't find a happy medium. My hands and feet get really - ice cold - sometimes, and there are times where ONE THING is really cold and everything else is fine - like one finger is ice cold and the rest of my hand is slightly chilly but so much warmer than that one finger.
- There are weeks on end that I wake up with sore throats. No reason - but it feels like I have strep.
- Nausea - need I say more?
- Insomnia - you would think with how tired I am, this wouldn't be a problem, but it is. I have periods of time, where.I.can't.sleep.
- Random lymph nodes swelling up ...
- My anxiety has gotten a lot worse. Somedays I can concur it - but even like today - being around a new person, I can't make eye contact... try to make small talk - but really I just want to escape.
- Issues with my eyes ... sometimes they just won't focus, sometimes they just hurt.... it stinks.
- Light & Noise sensitive. I hate the sunlight. It hurts. I can deal with the TV and other stuff, but the sunlight sucks. Instant headache. Noises, there are times - with four boys who create chaos that I just have to find a place that is silent. I.just.can't.take.it.
- I can get SICK ... so easily ..... my immune system sucks, if someone looks at me and they are sick, I'll get it. They only had it for 24 hours, I'll have it for 3 days to week ... it takes me a long time to fight things off and even if it's just a cold, it could be MONTHS before I'm better....
And I'm sure there is more I'm forgetting .....
But everyday - I get up. I do what has to be done. I don't want to move but I put one foot infront of the other. I have had to learn to ask for help but I guess since I don't complain much, that comes off as my being lazy.
Chronic fatigue syndrome (CFS) is the common name for a group of significantly debilitating medical conditions characterized by persistent fatigue and other specific symptoms that lasts for a minimum of six months in adults (and 3 months in children or adolescents). The fatigue is not due to exertion, not significantly relieved by rest, and is not caused by other medical conditions. CFS may also be referred to as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS), or by several other terms. Biological, genetic, infectious and psychological mechanisms have been proposed, but theetiology of CFS is not understood and it may have multiple causes.
Symptoms of CFS include malaise after exertion; unrefreshing sleep, widespread muscle and joint pain, sore throat, headaches of a type not previously experienced,cognitive difficulties, chronic and severe mental and physical exhaustion, and other characteristic symptoms in a previously healthy and active person. Additional symptoms may be reported, including muscle weakness, increased sensitivity to light, sounds and smells, orthostatic intolerance, digestive disturbances, depression, painful and often slightly swollen lymph nodes, cardiac and respiratory problems. It is unclear if these symptoms represent co-morbid conditions or if they are produced by an underlying etiology of CFS. CFS symptoms vary in number, type, and severity from person to person. Quality of life of persons with CFS can be extremely compromised.
Fatigue is a common symptom in many illnesses, but CFS is comparatively rare. Estimates of prevalence vary from 7 to 3,000 cases of CFS for every 100,000 adults; national health organizations have estimated more than one million Americans and approximately a quarter of a million people in the UK have CFS. CFS occurs more often in women than men, and is less prevalent among children and adolescents.
Although there is agreement that CFS poses genuine threats to health, happiness and productivity, various physicians' groups, researchers and patient advocates promote differing nomenclatures, diagnostic criteria, etiologic hypotheses and treatments, resulting in controversy about many aspects of the disorder. The name "chronic fatigue syndrome" is controversial; many patients and advocacy groups, as well as some experts, believe the name trivializes the medical condition and they promote a name change
And the worst feeling in the world is when you find out that someone you love thinks you are using it as an "excuse" or doesn't even believe that you have it.
I can pretend I am fine, inside my body is screaming in pain.
The Doctors idea on how to fix it?
Exercise.
Really?
That fixes the world.
I do *feel* better WHEN I exercise, but I could pay for it for days later. Like if I go out for a mile long walk - which I actually enjoy doing - and I could be bed-bound for two days. But I don't like staying in bed, so it's more like "house-bound" ... so is it worth it?
Graded exercise therapy is a form of physical therapy. A meta-analysis published in 2004 of five randomized trials found that patients who received exercise therapy were less fatigued after 12 weeks than the control participants, and the authors cautiously conclude that GET shows promise as a treatment. However, after 6 months the benefit became non-significant compared to the control group who did not receive GET, and functional work capacity was not significantly improved after therapy. A systematic review published in 2006 included the same five RCTs, noting that "no severely affected patients were included in the studies of GET". Surveys conducted on behalf of patient organizations find adverse effects to be very common
I love this graphic below because it is pretty spot on and insightful for being just a little graphic
Here is a "LETTER" someone wrote to help explain some things..... so I thought I would end with it. I did change the word "Relapse" to "Flare Up" because .... I don't see a "relapse" being a day to day basis. I had a "relapse" when Noah was born (my second child) but I have "Flare Ups" depending on the day ....
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Symptoms - How they affect one's life
The following may help to explain why we have difficulty socializing,
continuing to work or attending school.
As previously mentioned, our symptoms wax and wane. For some, their
illness may improve to the point where they are able to return to a acceptable
percentage of recovery, albeit with caution, carefully monitoring and balancing
their activities with rest. While others may plateau at a minimal level of
their prior activity, alternating with relapses, and a few may gradually
deteriorate over time.
Fatigue
The fatigue that individuals with M.E./CFS experience is unlike the
fatigue healthy individuals experience after working long hours, who can
regenerate their energy after a nights rest.
The fatigue we experience does not disappear after a nights sleep, nor
does bed rest relieve the fatigue. A simple task, such as washing our hair, can
exhaust us. Attending a doctor's appointment may cause some M.E./CFS patients
to be bedridden for days. Our legs and arms feel 'heavy', making walking
exhausting.
If you are a jogger, remember how you feel at the end of your run...
that is how we feel all day, everyday. We may have periods of improvement,
making this confusing to anyone observing us...but many are unable to sustain
this improved level of activity, making it very frustrating for us and our
families.
Sensory
over-stimulation
An increased sensitivity to sound and lights may require some M.E./CFS
patients to keep the television sound and household lighting turned very low.
Sunshine may be very painful to our eyes.
To attend a social function where there is music and multiple
background conversations, we can become very disorientated and unable to
understand or sort out words in a conversation. In a workplace or school, the
lighting system, phones ringing, movement of people walking around us (visual
motion) can leave us confused and disorientated.
When we have experienced an overload of sensory stimulation, we become
exhausted, and it may necessary to be in a darkened, quiet room for several
hours.
Flare
Ups of the illness
As each individual who has M.E./CFS has their own unique experience
with the illness and may have their own specific signals of a impending
relapse.
These 'signals' can be a sign of an impending flare up and our activity
must be stopped immediately in an attempt to ward off the flare up. A few of
the signals are increased confusion, increased sensitivity to sound and lights,
a hand or foot becoming 'ice' cold to touch, increased hyperness, increased
mood swings or increased irritability.
This is a constant struggle for us to try and observe as there may not
be any recognizable specific pattern to the symptoms. Because we were healthy,
contributing members of society, it is very difficult for us to accept that we
can no longer maintain our previous levels of energy. There are many times when
we deny the warning signals of a flare up, resulting in a prolonged period of
time to recover and restoration of our energy.
There are times when family and friends can observe signs of an
impending flare up before we recognize it. Frequently, I have heard that a
family or friend has observed our pallor (pale skin tones) just prior to a flare
up, and are able to cautious us that we need to rest.
Because of the unpredictability of our flare up, the planning of, and
attending social functions, can be very stressful for those who have M.E./CFS.
We experience frustration and disappointment, when at the last minute, we have
to cancel our plans.
Cognitive
difficulties
Short term memory loss and difficulties with concentration severely
impedes our ability to function in our lives.
The simple task of writing a grocery list may take several attempts to
complete. Verbal and written instructions can be very difficult to follow
resulting in frequent mistakes and uncompleted tasks.
The sorting of conversation from background noise also may be
difficult. If someone is speaking in a rapid speech pattern to us, we may have
difficulty in understanding what is being spoken as our brains can be sluggish
in processing the information. In addition, having to complete a task in a
rushed specific time frame can be very difficult, if not impossible, again, due
to the difficulty in processing information rapidly.
Difficulty with mathematics makes handling our finances very difficult.
Spatial disorientation means that we may frequently misjudge the
distance to a table top, resulting in many items landing on the floor, or being
unable to use familiar kitchen appliances.
During a conversation, we may have difficulty remembering familiar
words or names, or substituting words starting with the same first letter, such
as substituting 'silver' with 'shampoo'.
Tasks requiring sequencing is also difficult for us. At times, to
follow the instructions of a simple familiar cooking recipe may be impossible.
If we are not giving an emotional response that you would expect or
want, it may that our brain is being sluggish in sorting out your information
resulting in our inability to express ourselves emotionally on the spur of the
moment. Please be patient with us.
We
look well
As with all invisible illnesses, when you see us out in public, you may
comment that "we look well". However, what you may not realize, is
that after we return home, we may be bedridden for days, and that it has taken
every ounce of our strength to be in public. Our muscle strength may be
weakening and we may be struggling to follow and understand your conversation.
Weakened muscles - difficulty with stationary standing
Standing in line at a store is very difficult and impossible for many.
We need help with shopping for groceries, clothing and gifts, etc. If you are
talking with us, please offer to sit down and talk to us rather than have us
stationary stand, which for some, could result in a relapse.
The cause of this difficulty is being investigated and research studies
are suggesting that the cause of the difficulty in standing upright, or
orthostatic intolerance, may be due to a drop in blood pressure (Rowe and
Calkins, 1998), and the drop in blood pressure may be caused by having a low
blood volume (Streeten and Bell), or from our having excessive venous pooling
in the extremities (Stewart and Bell, 1998).
It is not uncommon for us to faint if we have been standing for a long
length of time. To help avoid this, do not stationary stand but keep
'shuffling' while standing in line at the check-out counter, or talking with
someone. There are times when even opening a refrigerator door can be a
difficult task.
Conserving
energy
Many of us have to decide where we are going to spend our energy each
day, and when we have spent our allotment for that day, we will need to rest.
This requires us to make difficult choices each day. If we do the laundry, then
we may not have the energy to prepare the evening meal.
As our friend or family member, no doubt before we became ill, you
could count on us being able to go out on the spur of the moment for a coffee
or grab a bit to eat in a restaurant. But now we require advance notice in
order to be able to rest prior to a social event, and even then we may not be
able to join you.
Please keep asking us to join you, as we want to, but just may not be
able to do it at this time. We want and need to be with our friends and family.
Feelings
of anger, frustration and irritability
There is a myriad of reasons why these feelings can occur, but in a
M.E./CFS sufferer, one of the reasons may be that if we are asked to sort out
too much information quickly, or asked to do more than we are physically
capable of and this can lead to frustration and anger. In addition, if we are
experiencing an overload of sensory stimulation (loud sounds, bright lights and
visual motion) this can make us irritable.
Please be patient with us, as it may be the symptoms of the illness
that is making us irritable.
