
Age: 28 (as on November 2013)
Location: Westerville, Ohio, US
Occupation: Senior Graphic Designer
Kind of occupation: Full Time
Year when symptoms started: 2008
Diagnosed in: 2009
Year when symptoms started: 2008
Diagnosed in: 2009
Marital Status: Married
What's your story? How and when were you diagnosed with Fibromyalgia? Were you misdiagnosed at the start?
My
senior year of college is when I started to have symptoms. I had always lived a
very fast paced life and was always working on schoolwork, attending class,
working both at my part-time job 2 internships and hanging out with friends
when I found any spare time in my schedule.
The first symptom I started to have was fatigue. Because I was an on-the-go type of person, at the time I just thought it was my body finally catching up to me. When the fatigue failed to disappear after a few months I started having pain in my joints as well as indigestion. The doctors seemed to be more concerned about my stomach issues than my widespread pain and continued to conduct more medical test to look for answers to my digestive issues. On September 1, 2009 the doctors removed my gallbladder, convinced that it would solve all my problems. Unfortunately the surgeon somehow closed off my bile ducts while I was under the knife and a few days later I had to go back under and have a stint put in my bile ducts so that I would be able to eat and drink again.
The first symptom I started to have was fatigue. Because I was an on-the-go type of person, at the time I just thought it was my body finally catching up to me. When the fatigue failed to disappear after a few months I started having pain in my joints as well as indigestion. The doctors seemed to be more concerned about my stomach issues than my widespread pain and continued to conduct more medical test to look for answers to my digestive issues. On September 1, 2009 the doctors removed my gallbladder, convinced that it would solve all my problems. Unfortunately the surgeon somehow closed off my bile ducts while I was under the knife and a few days later I had to go back under and have a stint put in my bile ducts so that I would be able to eat and drink again.
A month
later my symptoms have only seemed to worsen. My general practitioner conducted
more tests, sent me out to numerous specialists, but none of the tests showed
anything and the doctors seemed to focus on one or two of my symptoms, not
everything as a whole. I finally went back for a check up with my regular
doctor and while he was listening to my heartbeat through my back, he noticed
how tender I was when he touched me. He conducted the pain point exam and he
knew right there and then that it was Fibromyalgia.
I
thought that finally being told what was wrong with me would be a relief,
unfortunately I still have lots of unanswered questions. Knowing this
information does not solve my problems, or kill my pain. I still experience
pain daily but stay positive that I will get through this and believe that someday
I will live a day without pain.
How would you describe your pain and what kind of symptoms do you face regularly as well as occasionally?
My pain
is usually a deep achy feeling and lives in my bones and joints, almost as if I
have a fever full time. I most often experience pain in my elbows, knees, down
my neck and back and in my shoulders. I have sharp pains every now and then in
my breastbone which makes it hard for me to breathe. I also experience daily
headaches as well as migraines with double vision as well as numbness in my
hands and feet a few times per week. I still have indigestion issues but have
learned to stay away from certain types of foods (alcohol, gluten, dairy, corn)
in order to help with my stomach issues. I am tired on a daily basis but have a
hard time falling asleep. I never feel as if I get a good night's rest and
getting out of bed in the morning is challenge. I also have a tough time
regulating my body temperature and have a hard time tolerating cold and very
hot climates. I am always cold and tend to have very low blood pressure
majority of the time. Other symptoms that I experience on a regular basis
include anxiety, frequent viruses and infections, myofascial pain, trouble hearing,
muscle cramps and spasms and painful menstrual cycles.
Do you have any other medical conditions along with fibromyalgia?
I have
been diagnosed with Raynaud’s syndrome, which is what causes the numbness in my
hands and feet. I have also had a MRI and CT scan that showed I have low-lying
cerebral tonsils, otherwise known as Arnold Chiari Malformation. Doctors
believe that my headaches are associated with the Chiari, however I am still waiting
to get into the Cleveland Clinic to determine whether or not I need surgery
since my symptoms continue to worsen.
How has your life changed with Fibromyalgia?
As much
as I try not to let my Fibromyalgia rule my life, I have had to make drastic
changes in my life. I no longer live the fast-paced life I was used to. I often
feel that people perceive me as being lazy or anti-social because I do not have
enough energy to go out with friends or do housework. Working full time can be
challenging, especially on the days my pain is in full force. I still have a
hard time accepting that I may never be able to work an 8-hour day, come home
make a nice dinner for my husband and still have enough energy to do the dishes
and finish some chores around the house before bedtime. In my mind I still feel
like I can conquer the world, but once I set out to do it, I don’t get very far
before the pain sets in. I try to make sure that I still get out and see
friends, exercise, and do things because it will keep me sane. And even if I
only get out for a few hours a week it is enough to keep me happy.
How has fibromyalgia affected your relations?
Fibromyalgia
has definitely affected my social life. I used to be the life of the party, and
now I am surprised if I make it to the party. It is hard live like a normal 28-year
old, going out to bars, having fun dinner parties, etc. when I feel that I am
twice my age inside. My friends and family have always been very supportive.
And the ones didn’t try to understand what I am going through aren’t worth
fighting for to have in my life.
I am
lucky to have a very supportive husband, but I know it is hard on him. He would
love to go out with friends and stay out late, but I often feel as if I hold
him back from doing so. He often has a hard time understanding what I am going
through, and can’t seem to understand my level of pain. At times it is hard on
our relationship especially since at times we lead two entirely different
lives. He likes to go out and be adventurous and I know I have limits and often
play it safe. My husband also thinks that I am no longer an affectionate
person, which isn’t the case. I love him dearly and wish I could show my
affection but there are days when hugging hurts, so I have learned to put my
guard up in order to prevent being touched,
How has fibromyalgia affected your career?
My
employer is very flexible and allows me to work from home if I need to at
times. I know that most other companies would not allow me to work from home as
a graphic designer. I don’t necessarily think that my condition has held me back
from my current role, but I think it holds me back from exploring my options at
other companies because I probably will not find another company that allows me
to work from home when I do not feel well or take time off to make it to my
many doctors appointments.
What kind of specialist you are consulting?
Currently
I am seeing a Pain Management Specialist and a Rheumatolgist. In the past I
have also seen a holistic pain doctor, neurologist and an internal specialist.
Has your medication changed over the years? What medicines you are having now and are they helping?
I have
never done well with any of the medications that claim to help with
Fibromyalgia symptoms, they upset my stomach and make me even more tired than I
already was. In the past I have had doctors put me on and take me off medicines
such as Cymbalta, Lyrica, and Savella. I have been put on Ambien as well as
other sleep medications to help with my troubles falling asleep. I have been
put on numerous pain medications like Vicodin, Hydrocodone, Percoset, Oxycodone,
Tramadol, Ultram, Cortisone shots and the Butrans patch to help with my pain. I
have also been put on Imitrex and nerve medications for my headaches.
Currently,
I remain on the Butrans patch, which is a transdermal patch that I wear all the
time. It gives off a continuous low dose of medication to help with the pain. I
do think it helps with the overall pain. I change it once a week and though I
do experience itchiness around the application site, the side effects are
minimal compared to majority of other pain medications I have tried. I also
continue to use the Tramadol for days when my pain is worse that usual.
Have you tried alternate therapy? Did it help you?
I have
tried many types of alternative therapy such as massage therapy, tens units,
water hydro-massage beds, chiropractic adjustments, physical therapy, acupuncture
and neck traction.
The
only method that I felt gave me any sense of relief was the massage therapy. I
went to a massage therapist that is not the typical masseuse that would be
found in a day spa. The massage therapist was familiar with fibromyalgia and
was able to work my muscles without me having to point out my sensitive spots
to her. The massage therapy method wasn’t exactly relaxing at the time,
truthfully it hurt, but in the end it was the only method that relieved my pain
for a few days. Unfortunately my insurance company would only cover so many
visits per year, and it was very expensive to keep up with after I was
responsible to pay for the entire visit and not just my specialist copay.
What are your personal tips for relief?
I have
found that what I eat definitely plays a role in my pain levels. I have learned
that staying away from dairy, gluten and alcohol greatly improves how I feel
overall. If I eat like crap, I will feel like crap the next day. One of the
other huge triggers that I have found greatly increases my pain levels is diet
soda. For whatever reason, diet soda tends to make my headaches worse.
I have
also found that light stretching each morning when I wake up and before I go to
bed, helps to keep my body loose. My muscles and joints tend to tighten up if I
do not stretch them regularly and it sends my pain levels sky high.
Do / Can you exercise? What exercises do you do? Do you meditate?
I do
try to exercise when possible, however I am busy so I try to fit exercise in
when I have free time. I find that most forms of exercise are hard on my
joints. I do find that yoga is relaxing as well as a great way of relieving
tension and pain. I try to do light yoga at home or on my lunch break at work a
few times a week. Exercise makes you
feel good, and if you can push yourself to exercise even when you are feeling
bad, you will end up feeling better in the long run.
I have
learned to meditate and do breathing exercises on my own. I do not feel as if
it helps relieve my pain, but it does help in stressful situations which in the
long run could prevent my pain levels from increasing.
Have you changed your diet / gone gluten free and did it help you?
In high
school I started having problems digesting dairy, I gave it up completely and a
few weeks later I felt like a million dollars. Years later I started having
similar symptoms as I did in high school when I ate dairy but I had a much
harder time tracing it back to anything since gluten is in so many things. I
try my best to give up gluten because I know it makes me feel lethargic and
even achy at times, but it has always posed as a challenge when eating out at
restaurants and even going to dinner parties. It took me a long time to
understand what I can and cannot eat while going gluten free, so I never assume
that friends, family and even restaurant chefs know what I can safely eat.
What would you like to say to people who know someone with fibromyalgia?
Fibromyalgia
is an illness that can’t be seen. You never know when someone with Fibromyalgia
is hurting. We are strong and do not want your sympathy nor do not want to be
treated as if we are contagious. All we want is your respect for what we go through
on a daily basis. We live each day in pain, and that does not make us weak, it
makes us stronger than most people. We are not lazy, nor are we unmotivated,
however for us to live normal lives is easier said than done.
What would you like to say to doctors?
I would
like doctors to stop treating Fibromyalgia as a term used for the garbage pail
of symptoms that can’t be identified or linked to anything. I have had numerous
new symptoms come up over the past few years where doctors will tell me that it
is probably linked to the fibromyalgia. On any normal patient, the doctor would
conduct a series of tests to determine a cause, but because I have fibromyalgia
it does not mean my symptoms are linked to my illness. I learned that this
year, when it took doctors 6 months to conduct an MRI ultimately showing that I
have Chiari Malformation. Even after the MRI showed this, doctors told me that
it tends to fall hand in hand with fibromyalgia. Fibromyalgia may not be very
well understood, but that doesn’t mean you should give up on us since our cases
our harder to solve.
What relations and activities makes you feel better?
I have
found that friends and family are the best support you can turn to. I have
tried Fibromyalgia support groups before and I felt as if I was the only person
there with a positive outlook on life. Support groups are supposed to help you
go on with your daily life and lift you up, not bring you down. I have found
that ridding my life of all negative influences is the best way to keep a
positive outlook on life. I want to live my life, and I am the only one who can
control just how I choose to do so.
I do
enjoy joining in on conversations found on numerous Fibromyalgia Facebook
pages. It makes me feel better knowing that there are others in this world
experiencing similar problems and sharing stories is not only a good release,
but gives me insight as how others are trying to help their pain, what works
and what doesn’t. It has become a go to when my doctor is unable to answer my
questions and I find that I need answers. People around the world tune in every
day to these pages and just want to help others find answers to their problems
and have their questions answered in return. Fibromyalgia Facebook pages like an encyclopedia on the
illness written by hundreds of specialists.
When did you join the Fibromyalgia Awareness blog www.fibromyalgiaawareness.com / the blog's Facebook Page? What do you think about our awareness initiative?
I
joined the Fibromyalgia Awareness facebook page about a month or two ago. I
feel that educating the general public is important in our battle with this
silent illness. So many people only know what they have heard over the years
about Fibromyalgia. I have had people tell me to my face that the illness
doesn’t exist, is all in my head, it is just depression or it’s a cop out for
hypochondriacs. Many people are uneducated on illness and unless we take a
stand to try to set the record straight, people will continue to believe what
they have heard in the past or from other uneducated individuals. We all have
to do our best to spread the word that Fibromyalgia can’t be seen, but that
does not mean it is real.
---------------------------------------------------------------------------------
Interview
published on 6th September 2013. This blog and its owner have the rights
to this interview. Do not copy the interview on your website / print /
publish elsewhere without our prior approval that includes the approval
of the interviewee. However, you can share the link of this interview to
help us raise awareness. The opinions in the interview are solely of
the interviewee and we do not advocate the use of medicines / drugs, if
any, mentioned in the interview. Kindly consult your doctor before
starting any therapy or medicine mentioned here.
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
----------------------------------------------------------------------------------
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients
from across the world. Every patient's story is a source of learning
and inspiration. These stories serve many purposes like helping us
understand the condition and symptoms better, helping people with
similar symptoms get diagnosed in time, finding tips that work and
making the 'Invisible Illness' visible so that sufferers are saved from
the stress of making people understand that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every
patient's story is a source of learning and inspiration. These stories
serve many purposes like helping us understand the condition and
symptoms better, helping people with similar symptoms get diagnosed in
time, finding tips that work and making the 'Invisible Illness' visible
so that sufferers are saved from the stress of making people understand
that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/2013/09/fibromyalgia-patient-interview-2-keri.html#sthash.ELwUGdfP.dpuf
Fibromyalgia Patient Interview 1: Grace Simpson
You may also like to read:
Fibromyalgia Patient Interview 1: Grace Simpson
Fibromyalgia Patient Interview 3: Ann Kirk
---------------------------------------------------------------------------------
Interview
published on 6th September 2013. This blog and its owner have the rights
to this interview. Do not copy the interview on your website / print /
publish elsewhere without our prior approval that includes the approval
of the interviewee. However, you can share the link of this interview to
help us raise awareness. The opinions in the interview are solely of
the interviewee and we do not advocate the use of medicines / drugs, if
any, mentioned in the interview. Kindly consult your doctor before
starting any therapy or medicine mentioned here.
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
----------------------------------------------------------------------------------
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients
from across the world. Every patient's story is a source of learning
and inspiration. These stories serve many purposes like helping us
understand the condition and symptoms better, helping people with
similar symptoms get diagnosed in time, finding tips that work and
making the 'Invisible Illness' visible so that sufferers are saved from
the stress of making people understand that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every
patient's story is a source of learning and inspiration. These stories
serve many purposes like helping us understand the condition and
symptoms better, helping people with similar symptoms get diagnosed in
time, finding tips that work and making the 'Invisible Illness' visible
so that sufferers are saved from the stress of making people understand
that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/2013/09/fibromyalgia-patient-interview-2-keri.html#sthash.ELwUGdfP.dpuf
Fibromyalgia Patient Interview 1: Grace Simpson
You may also like to read:
Fibromyalgia Patient Interview 1: Grace Simpson
Fibromyalgia Patient Interview 3: Ann Kirk
-----------------------------------------------------------------------------------
Interview
published on 22nd November 2013. This blog and its owner have the
rights to this interview. Do not copy the interview on your website /
print / publish elsewhere without our prior approval that includes the
approval of the interviewee. However, you can share the link of this
interview to help us raise awareness. The opinions in the interview are
solely of the interviewee and we do not advocate the use of medicines /
drugs, if any, mentioned in the interview. Kindly consult your doctor
before starting any therapy or medicine mentioned here.
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
----------------------------------------------------------------------------------
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
----------------------------------------------------------------------------------
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients
from across the world. Every patient's story is a source of learning
and inspiration. These stories serve many purposes like helping us
understand the condition and symptoms better, helping people with
similar symptoms get diagnosed in time, finding tips that work and
making the 'Invisible Illness' visible so that sufferers are saved from
the stress of making people understand that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every
patient's story is a source of learning and inspiration. These stories
serve many purposes like helping us understand the condition and
symptoms better, helping people with similar symptoms get diagnosed in
time, finding tips that work and making the 'Invisible Illness' visible
so that sufferers are saved from the stress of making people understand
that they really are unwell.
---------------------------------------------------------------------------------
Interview
published on 6th September 2013. This blog and its owner have the rights
to this interview. Do not copy the interview on your website / print /
publish elsewhere without our prior approval that includes the approval
of the interviewee. However, you can share the link of this interview to
help us raise awareness. The opinions in the interview are solely of
the interviewee and we do not advocate the use of medicines / drugs, if
any, mentioned in the interview. Kindly consult your doctor before
starting any therapy or medicine mentioned here.
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
----------------------------------------------------------------------------------
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients
from across the world. Every patient's story is a source of learning
and inspiration. These stories serve many purposes like helping us
understand the condition and symptoms better, helping people with
similar symptoms get diagnosed in time, finding tips that work and
making the 'Invisible Illness' visible so that sufferers are saved from
the stress of making people understand that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every
patient's story is a source of learning and inspiration. These stories
serve many purposes like helping us understand the condition and
symptoms better, helping people with similar symptoms get diagnosed in
time, finding tips that work and making the 'Invisible Illness' visible
so that sufferers are saved from the stress of making people understand
that they really are unwell.
- See more at: http://www.fibromyalgiaawareness.com/2013/09/fibromyalgia-patient-interview-2-keri.html#sthash.ELwUGdfP.dpuf
Fibromyalgia Patient Interview 1: Grace Simpson
You may also like to read:
Fibromyalgia Patient Interview 1: Grace Simpson
Fibromyalgia Patient Interview 3: Ann Kirk
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