Age: 36 (as on July 2014)
Location: Bangalore, India
Occupation: Urban Planner
Kind of occupation: Full Time
Year when symptoms started: 2007
Diagnosed in: 2008
Year when symptoms started: 2007
Diagnosed in: 2008
Marital Status: Married
What's your story? How and when were you diagnosed with Fibromyalgia? Were you misdiagnosed at the start?
I have always had a very active life. I started working on my
Masters degree in Urban Planning while in my 3rd trimester with my
first one. Attending to my lil one and my family, working on schoolwork, my
internships, while trying to have some semblance of a social life. Soon after I
finished my masters, we found out that we were expecting our second one and I
also started working in my 3rd trimester (again J). I trained
for and completed the Nike Women’s Marathon in October
2007 and raised funds for the Leukemia and Lymphoma Foundation/Team in
Training.
My symptoms started showing up around the same time – fatigue and extreme pain but I attributed all that to my training and the injuries. I had also had a couple of procedures done due to endometriosis and disk bulge/back pain. Then the other symptoms started – dizziness, unexplained ear aches but no ear infection, pain in the TM joint, overall body pain, fatigue, palpitations with sudden sweating and a racing heart, killer migraines, burning sensation in the shoulders, stiffness in the neck, back pain…Name it, I had it.
My symptoms started showing up around the same time – fatigue and extreme pain but I attributed all that to my training and the injuries. I had also had a couple of procedures done due to endometriosis and disk bulge/back pain. Then the other symptoms started – dizziness, unexplained ear aches but no ear infection, pain in the TM joint, overall body pain, fatigue, palpitations with sudden sweating and a racing heart, killer migraines, burning sensation in the shoulders, stiffness in the neck, back pain…Name it, I had it.
My doctor ran a battery of tests and guess what, everything came out
normal (like that’s a surprise). She did note that there were times when I felt
tender to her touch and finally did the trigger point exam and told me that I
have all the symptoms for FM. This was in 2008, when FM was still a
‘wastebasket condition.’ She also told me that maybe, just maybe I am imagining
the pain and that the stiffness might be due to something else. Of course she
prescribed meds (lyrica and tramadol) and when the pain was unbearable, she put
in a referral for trigger point injections. It has been 5 years now, pain has progressed with time, 2013 being the worst low-point. I am
relearning and rediscovering my way to manage my pain to help me lead a
peaceful life.
How would you describe your pain and what kind of symptoms do you face regularly as well as occasionally?
Visualize a lit Christmas tree; the tree is my body and the twinkly little lights, going off and on - FM pain. The pain is literally everywhere, and it radiates to my back and my legs. On good flare-up days, the pain is dull, achy, bad and disturbed sleep. I feel like a truck ran me over and my pain scale is 30 (on a scale of 1-10). Bad flare-up days are accompanied with sharp, shooting and radiating pain, severe migraines and extreme sensitivity, myofascial pain and stiffness, arrhythmia and dizziness and finally little to NO sleep (pain scale is non existent as pain is through the roof). I look forward to days where my pain scale is 7. They are good days.
Visualize a lit Christmas tree; the tree is my body and the twinkly little lights, going off and on - FM pain. The pain is literally everywhere, and it radiates to my back and my legs. On good flare-up days, the pain is dull, achy, bad and disturbed sleep. I feel like a truck ran me over and my pain scale is 30 (on a scale of 1-10). Bad flare-up days are accompanied with sharp, shooting and radiating pain, severe migraines and extreme sensitivity, myofascial pain and stiffness, arrhythmia and dizziness and finally little to NO sleep (pain scale is non existent as pain is through the roof). I look forward to days where my pain scale is 7. They are good days.
Do you have any other medical conditions along with fibromyalgia?
No.
How has your life changed with Fibromyalgia?
I blog regularly and I am giving the link to my blog that kinda
recaptures the changes in my life (Its easier than typing as I am going through
a bad flare-up now) -
How has fibromyalgia affected your relations?
Well, the late nights are out, that’s for sure J Otherwise, I am extremely thankful and blessed to have the unconditional love and support from my husband, Guru and my boys, Vidyuth & Vishruth, my folks and most importantly, my lovely, lovely friends, who are with me through my thin and thick. Even when we all meet, they are cognizant of my pain and we manage.
Yes, there have been insensitive people who were, well insensitive.
Do I feel hurt, yes but is it my problem – nope. How do I deal with them – like
this : I get it….do you?
How has fibromyalgia affected your career?
I took a 6-month break last year and worked on improving my resistance, my mental and physical well-being. I volunteer with eVidyaloka, where we they to fill in the gaps in the education delivered to rural kids in TN, AP and Jharkhand at the moment.
What kind of specialist you are consulting?
I consult Dr.Deepak Sharan, Orthopedic and Rehabilitation surgeon.
I consult Dr.Deepak Sharan, Orthopedic and Rehabilitation surgeon.
Has your medication changed over the years? What medicines you are having now and are they helping?
Yes, the dosage has increased – gabapentin, ultracet and
amitriptyline. They do help but I consciously don’t take the full dosage, i.e.,
I take the morning dosage around 11.00 am –noon and skip the afternoon meds and
take the night dosage.
Have you tried alternate therapy? Did it help you?
I met with a Cognitive Behavioral Therapist, who helped me realize that I was more critical of myself than I was of the others, and I set standards that were so high, it became impossible to reach them. So I was actually pushing myself more than I needed to. In addition, because of the chronic pain, the physical body is in a constant hypersensitive state. Add the emotional component, I was basically a jumbled mess.
I met with a Cognitive Behavioral Therapist, who helped me realize that I was more critical of myself than I was of the others, and I set standards that were so high, it became impossible to reach them. So I was actually pushing myself more than I needed to. In addition, because of the chronic pain, the physical body is in a constant hypersensitive state. Add the emotional component, I was basically a jumbled mess.
He told me ”I am simply mourning for the loss of the person I
used to be, the person I was and not what I could have been. And like any
grieving process, I have to go through the motions, and that it is not
necessary that I go through all of them one by one. I might be going through
all of it at the same time i.e. denying that I am in pain and hence push myself
to do more but not being able to which leads to anger. When pain hits full
force, I am in fear and sometimes in grief ‘cos of the various restrictions.
Unless and until I am MINDFUL (towards me) and exercise SELF-COMPASSION, I will
be in denial and will only end up hurting myself more. In addition, cos of the
various restrictions, I might have to unlearn and relearn (or pace myself) to
do a lot of these tasks, tasks that are simple and that I used take for
granted.”
It actually works – I am more
compassionate and less critical of myself, I set small goals, everyday, take my
life - one task at a time, learnt to say NO. I do not compare my current self
with my past self, i.e. I used to be able to do xyz, now I am unable to etc. Most
importantly, I have learnt to let go :)
What are your personal tips for relief?Same things I learnt - Treat yourself with compassion, don't be critical of yourself, Set small goals, take your life - one task at a time, learn to say NO, listen to your body, Do not compare your current self with your past self, take lots of rest and LET GO!
Do / Can you exercise? What exercises do you do? Do you meditate?
Yes, I walk a minimum of 3 kms everyday. I have started doing therapeutic yoga. I meditate everyday and am very conscious and aware of my thoughts and feelings. I am able to accept and cope with my pain better.
Yes, I walk a minimum of 3 kms everyday. I have started doing therapeutic yoga. I meditate everyday and am very conscious and aware of my thoughts and feelings. I am able to accept and cope with my pain better.
Meditation and maintaining silence has brought my focus back to my
priority of giving a good childhood to my kids and being THERE for them
unconditionally.
“ All I know is their love, their
innocent, unconditional love is the reason that I keep getting up, no matter
how many times I fall face down. They look out for me in so many ways and
sometimes, I feel like they are the parent and I am the child. And of course
there are times when I feel bad and guilty for my bad health cos I feel that
they have had to grow up a bit faster…..so I work very hard to feel better,
improve my resistance so that I can be a better parent to them.”
Have you changed your diet / gone gluten free and did it help you?
I have made a conscious choice to include more greens/bananas in my
diet – increases potassium/magnesium and iron. Helps with pain.
What would you like to say to people who know someone with fibromyalgia?
I call FM the in-between,
invisible illness. From my blog - “People usually relate to conditions that
they can either see, i.e. a fracture, flu, cold (something that has a cure
time) or a life threatening condition.
But for the in
betweens like me, the ones that have chronic illnesses but look alright from
outside, they are always ready – ready to judge, ready to find fault about why
someone is sick, ready to offer solutions. I GET IT, people do it cos they are
concerned, they are worried and cannot understand how someone, who looks
healthy, who is able to manage their chores and daily activities, has some semblance
of a social life is not getting better. Maybe they think I am not trying hard
to get better or maybe I am not getting better according to their schedule.
I get your
concern but are you able to get that I smile and move on with my life cos I
chose to be like that, I chose to hide the pain and the grimace on my face and
replace it with a smile. I am not asking for your empathy or understanding
even. All I ask is that you don’t judge, based on what you see. Even if you do,
please keep it to yourself. People living with invisible illnesses could do
without the insensitive remarks.”
What would you like to say to doctors?
I am fortunate enough to find a doctor and his group of physical therapists, who understand the intensity of FM pain and the condition. But there are others who base their diagnosis on the test results and not actually on what the patient is experiencing. They assume that it is a cry for attention or vivid imagination (it’s all in the mind) or obsession. No one actually lies about being in pain. There were a lot of illnesses in the past, like TB that were considered taboo, where the patient was made to undergo a miserable living but with meds and medical advancements, people with TB live a normal and healthy life amidst loved ones. In 2008, FM was still considered a “It’s all in the head” condition but now, it has been accepted as an auto-immune condition so who knows what the future medical discoveries will bring. All I ask is be open and listen to your patient. Just because you do not know about it does not mean it does not exist.
I am fortunate enough to find a doctor and his group of physical therapists, who understand the intensity of FM pain and the condition. But there are others who base their diagnosis on the test results and not actually on what the patient is experiencing. They assume that it is a cry for attention or vivid imagination (it’s all in the mind) or obsession. No one actually lies about being in pain. There were a lot of illnesses in the past, like TB that were considered taboo, where the patient was made to undergo a miserable living but with meds and medical advancements, people with TB live a normal and healthy life amidst loved ones. In 2008, FM was still considered a “It’s all in the head” condition but now, it has been accepted as an auto-immune condition so who knows what the future medical discoveries will bring. All I ask is be open and listen to your patient. Just because you do not know about it does not mean it does not exist.
What relations and activities makes you feel better?
Definitely my family and my friends J. They make
life enjoyable and my pain bearable. I blog @ LGV - Expect the Unexpected, I also listen to music, bake
regularly. I also follow blogs/Facebook pages of people with autoimmune
illnesses. These pages/blogs provide an inside look into how others manage
their condition while living their life.
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 became a member of Fibromyalgia Awareness around April 2013. It’s all about making an invisible illness “Visible” and it is the step in the right direction.
Taking
the cue from Neil Armstrong ~ “A small step for man, a giant leap for mankind.”
Thanks
for doing this. Appreciate it.
---------------------------------------------------------------------------------
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 15th July 2014. 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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