
Age: 52
Location: (City / State / Country): WA, USA
Occupation: Was a medical transcriptionist, now disabled
Year when symptoms started: 2004
Diagnosed in: 2008
Marital Status: Separated
What's your story? How and when were you diagnosed with Fibromyalgia? Were you misdiagnosed at the start?
I
had a bad flu. Took me three months to fully recover from it. At the
time, I was caring for my mom, who was in a nursing home after having a
surgery complicated by a staph infection. I went to my family doctor,
who thought I might have depression with pain. I tried various OTC
medications, but the pain levels kept climbing despite trying everything
available for pain. I thought I was crazy and just went with the idea
that depression was causing me to be in pain. At some point, I realized
that the pain was different. I started to recognize flare ups versus arthritis pain. I developed a host of new symptoms, stomach problems, etc.
I finally went to a neurologist in 2008, who diagnosed me
correctly after a battery of tests. She referred me back to my family
doctor who has been trying to help me manage symptoms of Fibromyalgia as
well as other conditions I suffer from (mentioned below).
Since my diagnosis
I have tried various medications, but I am unable to take most of them
without uncomfortable side effects. I found some relief using a TENS
unit, but I soon grew accustomed to it and it lost its effectiveness. I
am fortunate to live in a state with a world renowned University
hospital. I received my diagnosis fairly quickly, but soon discovered
that nothing really puts a dent in it and pain is a part of my daily
life. I have learned methods of controlling some of it, but it remains a
challenge in every thing that I do. The first thing I did once I
received a diagnosis that I could understand was to buy books on the
subject, read them and give them to my doctor so that she could help
others. Just getting a diagnosis was a good thing. It gave me a starting
place, a chance to begin learning about my condition. Yes, it was hard
to get to the diagnosis, but there was a sense of relief that I wasn't
imagining this awful pain, I have a condition which causes it.
These are
three of the books that I recommend to people with Fibro:
From Fatigued
to Fantastic by Jacob Teitelbaum, MD
The First Year: Fibromyalgia: An
Essential Guide for the Newly Diagnosed- by
Mari Florence, Claudia Craig Marek and M.D. R. Paul St. Armand M.D
Fibromyalgia & Chronic Myofascial Pain: A Survival Manual by Devin Starlanyl and Mary Ellen Copeland.
These books have helped me a great deal. The key to acceptance is understanding and I fully accept and am learning more about this condition every day.
How would you describe
your pain and what kind of symptoms do you face regularly as well as
occasionally?
Since being diagnosed I have discovered that a normal day
is around 4-6 on my pain scale.
I live for the days when it comes down
to a 4! I have almost constant muscle spasms in my back, I have
developed food and chemical allergies. Shampoo burns my scalp. I
developed allergies to foods I have eaten for years. In the beginning, I
used to let my pain stop me from activities I enjoyed, but I have done a
great deal of studying up on my condition and know that I MUST keep
moving and I do most days. If my pain is out of control, I spend a lot of
time resting. Learning to differentiate between arthritic pain and a
fibro flare-up has helped in treating myself day to day.
Over the years I
have had problems with my legs, I fall and that causes me a great deal
of pain. The falls frighten me. I have discussed this with me doctor and
I am somewhat worried about MS. I have horrid insomnia. I have severe
dry eye, and the meds I take cause severe dry mouth. I have learned my
limits and respect them, knowing that anything I do is going to have me
paying the price in pain if I choose to over do it. I break out in sores
all over my body and no one can figure out why. I get sick very easily
and the severity and duration are longer than you would expect. I have
burning, tingling, cramping pain. It is hard to define. I am exhausted, I
am SORE! It sometimes hurts to be touched. It is so hard to describe
because every day with this condition is different. Nothing seems the
same day to day.
Each day brings something new or something
better/worse. Fibromyalgia can affect every system in your body.
I think that is why they are having such a hard time understanding it, but I believe they will find the answer, and perhaps a cure!
I think that is why they are having such a hard time understanding it, but I believe they will find the answer, and perhaps a cure!
Do you have any other medical conditions along with fibromyalgia?
Osteoarthritis, chronic fatigue, bilateral carpal tunnel, degenerative disc
disease and a general breakdown of my immune system.
How has your life changed with Fibromyalgia?
My
inability to go out has cost me friendships, the ability to go see my
mom who is very ill, involves my driving for 2 hours and I am no longer
able to do that. It has caused me to be depressed and that depression
has been a factor in my separation from my husband. I used to be
obsessed with my pain and complained constantly. I just didn't
understand it, and I was crying out for someone to understand me... help
me. I found little information in books and the greatest source of
information has come from other fibromyalgia patients. I have a high
pain tolerance and I am shocked at just how much pain I can be in and
still stay standing. As the years pass, what used to be a 6 on my pain
scale is now a 4. You do develop a greater ability to tolerate your
fibro pain, but it is always there, always hurting, and it alters your
life forever.
How has fibromyalgia affected your relations?
Because
I am home most of the time, it has cost me friendships. My kids are
understanding, but my husband couldn't deal with a sick wife. He's a
VERY active man (he climbs mountains). I will never be able to do those
things with him and we grew apart. We separated in January 2013.
How has fibromyalgia
affected your career?
It ended it. My Fibro fog could cost someone their
life if I typed anything incorrectly into a patient's file. I could not
take on that stress and responsibility.
What kind of specialist
you are consulting?
None at the moment. I am very much into holistic
medicine. If I continue to develop new symptoms that are in line with
with a new problem I will go back to a neurologist.
Has your medication changed over the years? What medicines you are having now and are they helping?
I
use medical Marijuana, it is legal in my state. I use
it in edible form or tinctures. I have been tried on NSAIDS, morphine,
prescription pain killers, anti depressants. Just about everything. I
draw the line at biologicals. I will not take them. They destroy your
immune system and are generally very dangerous. I hate to see them
advertising them so freely on the TV. Patients just do not know what
they are getting into when they begin taking this type of medication.
I can't emphasize enough how important it is to empower yourself with all the knowledge you can find. You are your own best advocate. As long as patients continue to blindly trust their doctors, the less likely they are to become empowered enough to ask questions, and demand answers. Our society has encouraged patients to accept whatever their doctor tells them, as a patient diagnosed with this condition you are going to run into all kinds of doctors. Some will tell you that it is all in your head, some will ignore clues that can lead to a correct diagnosis.
I can't emphasize enough how important it is to empower yourself with all the knowledge you can find. You are your own best advocate. As long as patients continue to blindly trust their doctors, the less likely they are to become empowered enough to ask questions, and demand answers. Our society has encouraged patients to accept whatever their doctor tells them, as a patient diagnosed with this condition you are going to run into all kinds of doctors. Some will tell you that it is all in your head, some will ignore clues that can lead to a correct diagnosis.
Familiarize yourself with every aspect of this condition and become your
own advocate. It is empowering and it helps you feel like you have some
control over what feels uncontrollable.
Have you tried alternate therapy? Did it help you?
Acupuncture helped
some, and I will still go if the pain gets so bad I can't function. I
have used Reiki as well. There was some hope that Cranial Sacral Therapy
might help me, but I haven't tried that yet. My skin is hyper sensitive
and sometimes touching me can put me into a great deal of pain. I am
very careful about that, so no massages for me!! Warm water is my best
friend.
What are your personal
tips for relief?
REST, REST and REST. Understand that your life is all
about energy. Resting allows you to conserve energy that you can expend
later when needed.
I view my energy as little boxes. If a trip to the
store is going to use 45 of my 50 boxes for the day, I know that I will
have to replace that energy in order to do anything else that day.
I
rest in between activities and store up my energy according to what I
have to do each day. I find a great deal of help in meditation and
binaural beats for sleeping and relaxation. Understand your limits and
explain them to your family. Enlist their help. Getting your family
involved in understanding your condition is KEY. I did not do that until
my marriage imploded. I should have explained the medical and emotional
implications to everyone around me, but spent to much time feeling
angry and sorry for myself. Try not to go there!! Joining a support
group is also very helpful. Just hearing that someone else has fallen
down just like you did is somewhat comforting. The key here is in
knowing that you are not alone.
Do / Can you exercise? What exercises do you do? Do you meditate?
In
the spring and summer months, with warmer weather and
steadier barometrics I am able to function quite well. What used to be a
level 6 on my scale is now a 4. You build up a tolerance to pain and
can withstand more than you think most days, but then comes the winter,
the cold, the low pressure systems, the rain... Not a good time of year
for me. I have trouble walking and spend most of my time warm and in bed
reading or doing crafty things with my hands.
Yes, I am a firm believer
in the power of the mind. I meditate almost every day. I find that SLOW
stretching rather that getting out of bed immediately in the morning
can sometime help me get more done on a busy morning. Thai chi is
wonderful with its slow movements and gentle approach. I love it!!
Have you changed your diet / gone gluten free and did it help you?
I
cut out white flour and sugar from my diet this past year and have
noticed a dramatic change. I've dropped 68 pounds so far, my body feels
better and my pain is more manageable with my chosen modalities. I have
had more good days this past year than bad and I actually had about a
week where my pain levels were about a 2!!! I still have stomach
problems, but they are not as bad as they were and anything like that
encourages me to keep going, keep learning and keep trying to find new
activities is a good thing. Taking my focus off my pain, while
acknowledging that it is there, is the best way to get through my day!
What would you like to say to people who know someone with fibromyalgia?
Be
kind. Remember, you may not see what is happening inside of their
bodies. Everything that a fibromyalgia sufferer does involves
the expenditure of precious energy. Be grateful that they think you are
worth that extra pain they are no doubt going through.
Please do not
judge what you can't understand.
What would you like to say to doctors? Honestly?
I'd like to tell them this: "My name is Keri. I have a name, I am not
my disease! I am not your Guinea Pig. No, I will not take every
experimental drug out there. Never under estimate my intelligence,
because chances are I know as much as, or more, than you do about this
condition. I am a human being and I am in pain. I am not an addict, I am
not playing games. I am deadly serious when it comes to the treatment
of my condition and I will be included in any medical decisions made.
Don't expect a 10 minute office visit. Expect to give me the time and
attention I need and deserve as a patient. Respect my right to question
your every decision. This is MY body and I have to live in it."
Having worked in a part of the medical community has given me a passion to empower others. Do not sit there and take it. Educate yourself, come to every appointment with a list of questions and symptoms. Take the time to write down what your doctor has to say. If your doctor is not willing to answer your questions, respect your right to fully understand, or questions your motives for the visit, he/she is NOT the right doctor for you. Working WITH your doctor is essential.
What relations and
activities makes you feel better? I love reading,
writing, I enjoy my online support group. My family (my children) are
adults, but are only a phone call away and I am blessed with wonderful
daughters who come, when they are needed, to help me. Some days I can't
navigate the stairs, some days I am so tired I can't fix dinner. Some
days I sleep all day storing up precious energy so that I can go out to dinner.
I have a therapy bird and he brings me a lot of love and laughter. I carry a notebook with me everywhere I go - I keep one beside my bed, and another where I sit to watch TV. I have to constantly write things down because the fibro fog can get VERY intense and I feel so badly when I forget something important. I am beginning to raise therapy birds for others, and this activity can take a great deal of time and effort, but I love it, and hope other patients will benefit from a wonderful relationship with their own therapy bird!
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 do not recall (LOL-Fibro Fog??) when I joined, but I spend
time on the page reading and chiming in with what I have learned, if
needed. I do not feel like a stranger among these people. I KNOW they
GET IT and they GET ME! I'm very grateful for the website and the
postings on Facebook!!
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Interview published on 31sy August 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.
- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpufYou can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
Fibromyalgia Patient Interview 1: Grace Simpso
Fibromyalgia Patient Interview 1: Grace Simpson
----------------------------------------------------------------------------------
Interview published on 31sy August 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.
- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpufYou can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
Really good advice. Hope you feel better soon Keri!
ReplyDeleteWow, great interview! Go, Keri! (I had to go back up to the top to make sure I was spelling that right; I was a writer/editor/proofreader once, but that's gone in the fog.) We need as many advocates with medical backgrounds as we can get.
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