Fibromyalgia Care Society of America | My name is Chloe
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My name is Chloe

25 Nov My name is Chloe

My name is Chloe and I am a 27-year-old woman living with fibromyalgia. I

was diagnosed about a year ago, and when I was contacted by the FCSA I knew that

I needed to get involved, not only to help others, but also to further help myself.

Living with an “invisible” disease has been one of the hardest things I have ever

gone through or dealt with. It is extremely important that the fibromyalgia

community come together to avoid the feelings of being alone.

Like many others who ultimately get diagnosed with fibromyalgia, the road

leading up to the diagnosis is a long and painful one. There are multiple tests;

doctor visits, pricking and prodding that must be done, which ultimately end up

being inconclusive. My issues began as what was diagnosed as severe migraines. I

would get such bad pains in my neck and head that my vision was blurred; I

sometimes lost sight in my right eye, and was extremely dizzy. I made a few visits to

the emergency room, visited numerous neurologists, got X-Rays, MRI’s, CT Scans,

blood tests, etc.

After a month or two, the pains started stemming down my arms, back, and

legs. It got to the point that I could not turn my head from side to side, and at some

points, made it unbearable to walk. At the time, I was a first grade teacher at an

inner city school. I had to go on a medical leave due to my physical condition. On

top of dealing with the physical pain, the pain I was dealing with started to take a

toll on my mental well-being. I love teaching; people always tell me I am a natural,

so to have to temporarily leave my position was devastating.

After seeing that all of my test results were coming back fine, my neurologist

recommended that I go to a pain management doctor, which then led me to go to a

rheumatologist. It was these two doctors that gave me the official fibromyalgia

diagnosis. I was left sitting in the doctor’s office with an explanation of what the

condition was, but no real advice as to how I should go about dealing with it (just

because I received a diagnosis doesn’t mean that the pain miraculously

disappeared)!

I was still experiencing severe pain, sleepless nights, and hopeless thoughts.

At this point, I was willing to try anything. I tried countless types of medicines

(none that worked), acupuncture, reiki, spiritual healing, trigger point injections,

laser therapy, and the list goes on. Different approaches work for different people; I

found that what works best for me is going to physical therapy. The physical

therapist that I see does soft tissue work, which has been a lifesaver. I have recently

started one on one Pilates and yoga training, which has been helping as well.

Another factor that has made a huge difference is that I am no longer on my feet all

day everyday running around with little first graders. My school was kind enough to

find me a position where I assist ELA teachers and students who are struggling with

reading and writing in grades 5, 6, and 7.

Yes, I have made a lot of progress from where I was a year ago, but that does

not mean that I am cured or pain free. One of the most difficult aspects of dealing

with fibromyalgia is that people cannot literally see your pain and what you are

going through. The worst comment a person could make is, “well you don’t look

sick”, or “come on, it’s all in your head.” Fibromyalgia is still such a new illness that

many people don’t even know what it is. That’s why I felt that it was necessary to

get involved with FCSA and help bring awareness around this disease.

I am lucky enough to have a great support system. This diagnosis has not

been easy on anyone in my family; however, they have stuck by me through thick

and thin. They were there for me when I needed someone to literally walk me up

the stairs or to the bathroom because I could not put weight on my legs. They are

the ones that have helped me get to the point where I am today. I know that I am

blessed, I also know there are people who do not have the same support that I do.

This is why FCSA is such a great organization and why we all must do as much as

we can to make people aware of what it is like to live with an invisible disease.

3 Comments
  • lynn
    Reply

    Hi Chloe, After being in bed for a decade of 24/7 headaches weekly migraines and FMS pain, I found a FMS specialist in San Francisco , CA. Her name is Melissa Congdon and because of her’s and Dr St Amand in Los Angeles, CA, I am getting better. It’s not a cure but a REVERSAL in symptoms.

    I’m now well enough o take extra strength Tylenol for pain and I work 6 hrs a week with my 87 yr old mother in law. I can cook most nights and keep up with the bills and the house. I’m still too fatigued to work outside the home, but that will come. It’s only been 11 months.

    I’m grateful you are spreading the word about Fibro. I’m spreading the word about fibromyalgiatreatment.com and Fac Books “fibrobuddies on guaifenesin. It’s not an easy treatment at first, but it’s helped thousand resume normal lives. Check it out. Good luck to you!

    December 14, 2015 at 10:41 pm
  • Thanks Chloe for this post. My wife has fibromyalgia too and I’m looking for information about how to improve her lifestyle. Could we get in contact for talk about it? Thanks again

    March 8, 2016 at 4:53 pm
  • Amy Gilmore
    Reply

    I am almost 30 years old, and I have been dealing with increasing pain, depression, loss of mobility, doctors, tests, treatments, etc. due to fibromyalgia for about 5 years now. You mentioned a couple of things that people have said or would likely say to someone with our invisible illness. What I have been told the most (and by a LOT of people), is “you’re too young to have these problems”, or some close version of that. Ignorance may be bliss, but it’s not an excuse to be insensitive or just flat out rude. What I always tell people when they say that, is “just because I am young, doesn’t mean that my health concerns don’t exist”. People are too ignorant and/or insensitive, and I’m finding out that WAY too many doctors are too. I can forgive the general public for the ignorance (to an extent), but I have been to far too many doctors that are either ignorant, insensitive, or both. It’s very frustrating and depressing to have this pain and not have anyone understand you or believe you, but doctors are supposed to be the people that ARE sensitive and ARE knowledgeable, right? I’m sorry if I went off on a tangent, I find my mind getting worse and worse with concentration, memory, and general thought processes these days due to the fibro (and possibly also due to my meds?). Just try to keep your head up and don’t let what ignorant and/or insensitive people say to you. Just remember, just because they say something, doesn’t make it true or right.

    May 9, 2016 at 2:24 am

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