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Fibromyalgia Patient Interview 1: Grace Simpson

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.

Meet Grace Simpson from Richmond, VA, USA. 
She has been very kind to join us in our mission to raise awareness about Fibromyalgia and we thank her for participating in the interview.

Age: 26 (as on August 2013)
Location: Richmond, VA, USA
Occupation: Data entry & management
Kind of occupation: Part time
Year when symptoms started: 1990
Diagnosed in: 1993
Marital Status: Live-in

What's your story? How and when were you diagnosed with Fibromyalgia? Were you misdiagnosed at the start?
When I was 2 years old, my family contracted a virus, which we later found out was a variety of Epstein-Barr. In my mother, my sister and me, it led to having CFS/ME and Fibro. In my father, it led to temporary blindness in one eye that lasted about 6 months. They thought it was brain cancer. Thankfully, he is fine, but my mother, sister and I still struggle.

My sister had it harder than I did, because none of the doctors saw the change between pre and post virus, only the symptoms. She nearly died of anorexia induced by just plain feeling awful, and the stomach issues that can accompany our issues. Most doctors thought my parents were abusing here, or that she was just trying to get attention. Thankfully, my parents fought for her. In my case, my mother’s doctor turned to her when I was 3 and said “I’m afraid we have our third case…” and my treatment/management of my illnesses started then, but I wasn’t officially diagnosed with CFS/ME or Fibro until I was 6.

How would you describe your pain and what kind of symptoms do you face regularly as well as occasionally?  
Regularly, there is a horrid stiffness in all of my joints. I constantly wish someone would stick a giant stick between my shoulder blades, and through to my sternum. That is where my worst tension and stiffness is. It’s awful, and it feels like an alien baby is trying to burst its way out. My hips are not sitting in the proper position, so on top of fibro, I have pain in my hips. Generally, if you poke me anywhere on my body, it will hurt, but my thighs, shoulders and upper arms are the worst places to be touched. A pat on the shoulder can feel like an anvil. As for occasionally, unless I go way beyond my limit of activity, I experience most of it daily. If I do go beyond my limit, everything has a dull ache, including my fingertips. Typing can become painful, which isn’t great for a data entry person.
Just because I can walk, and lift heavy things IF I MUST, doesn’t mean I don’t deserve a handicapped parking spot. I’ve broken down crying at the target parking lot because my body hurt so much, but I needed my medicine, and the closest spot was more than halfway to the back.
Do you have any other medical conditions along with fibromyalgia?  
I have Polycystic Ovarian Syndrome, hypothyroidism, Chronic Fatigue Syndrome, ADHD, scoliosis to a fair degree as well as the tilted hips, migraines and multiple chemical sensitivities. For example, working at Party City for 6 months made me develop an allergy to latex.

How has your life changed with Fibromyalgia? 
It’s hard to say for me, since I don’t really remember a life without it. I have to plan everything, and I become VERY anxious if something doesn’t go according to plan, because who knows how my body will react if I have to stand longer, go longer without eating, etc. I have to give myself time after showering to cool down and let my shoulders relax after washing my hair and then getting dressed before I can really start my day. I’m a night owl, always have been, and getting up before 10 feels like I might as well have not slept.

How has fibromyalgia affected your relations? 
I’m not as affectionate as most people, and I think it’s because hugs can sometimes hurt me, so I just learned to not be outwardly affectionate. Even the people I hold closest to me, they still have trouble remembering I’m not “normal” and I can’t be as spontaneous as them, because it could hurt me. It’s created trouble between my two best friends of around 12 years. It’s gotten easier as we’ve grown up, but we still have a spat about it around once a year. I don’t think they realize how much pain I experience every day. I have a VERY high pain tolerance, so when I say I am in pain and can’t do anything; I probably should have been in bed hours ago, if not days.

How has fibromyalgia affected your career? 
I am VERY lucky to have a father who is able to hire me. I manage his databases and do data entry for him. I started the data entry when I was 12, just as something to do that didn’t hurt. If it wasn’t for him, I’m not sure I would have a job, as the type of environment I need to be able to work and be healthy, nearly doesn’t exist.

What kind of specialist you are consulting? 
I have a neuropsychologist as my therapist because of the cognitive issues that come with my particular health issues. She understands the horrible shame that comes with brain fog, and forgetting things so, so often. Beyond that, I just have my GP.

Has your medication changed over the years? What medicines you are having now and are they helping? 
Oh yes. I’ve been on so many, I don’t even remember most of them. What I am on now is working fairly well. I take Cymbalta, Relafin (anti-inflammitory), Glucophage (for PCOS), birth control, vit d, iron, Singulair, Synthroid and Vyvannse. I am trying my best to not take pain pills until I am older. I see my mother struggling with pain and nerve issues that while they are worse than mine, I just want to hold off for as long as I can so they will work when I am older, as I have to live with this for many years, and she is already older. 

Lots of people disagree and say my quality of life will be better. It might. But, what about 20 years from now when common pain meds don’t even work as well as Tylenol does now? I have a rare viewpoint with Fibro. I grew up with it, so I developed a tolerance to pain, and therefore didn’t start with pain meds right away as I was still a child. I stand by my decision to not use it until I absolutely have to, but I will fight for your right to take them.

Have you tried alternate therapy? Did it help you? 
I have. I have previously used Medical Cannabis, but decided to forgo that until it is legal in my state. This is a shame, because it helped tremendously. My stomach cramps and IBS disappeared. My shoulders felt loose. My hips still hurt, but as the rest of me didn’t, it was easier to handle. It didn’t help with the brain fog, I admit, but the pain relief was immense and immediate. I fully advocate medicinal cannabis, and believe it’s plain cruel to withhold it from people who are in pain, while overcrowding prisons, but that’s another interview. Beyond that, I have tried a vibration body bar that was supposed to loosen muscles…. Not so much, but it did strengthen my balance (of which I have none). I’ve tried d-ribose supplements, which did help stiffness.

What are your personal tips for relief? 
Showers, naps, reading a book. Anything non-physical that can take your mind off of it. I don’t really have many options personally besides resting and focusing on something that isn’t pain.

Do / Can you exercise? What exercises do you do? Do you meditate? 
I can stretch, and do some small hand weights. Walking is harder. Biking is nice, but the leaning over can get to my shoulders. I haven’t tried meditation, because it doesn’t go well with ADHD. I can also do some swimming, but the chlorine irritates my skin.

Have you changed your diet / gone gluten free and did it help you? 
I haven’t. I really should, but I suppose that since I’ve always had this, I’ve kind of accepted it and feel that a gluten free diet is too much effort and denying myself of something when I’ve already been denied too much in life. It’s a horrible mindset, and I’m trying to fix it, but it’s one I’ve had my entire life.

What would you like to say to people who know someone with fibromyalgia? 
Don’t forget to put yourself first sometimes. Learn to enjoy small things, like watching squirrels play fight over an acorn, or to listen to your dog snoring, or even to just sit outside and just listen. Life doesn’t have to be about huge, long (and painful) adventures.

What would you like to say to doctors? 
Please don’t assume. Fibro and other related illnesses are so complex that every case isn’t the same. So, if your last fibro patient didn’t have IBS, it doesn’t mean that mine isn’t related to fibro and not just a standalone condition. Listen. Don’t push medication. And also, don’t hold it back thinking we are drug addicts. Some people have just mild stiffness when they wake up, and others struggle to even brush their teeth because their jaw and wrists and elbows hurt. Build your opinions on an individual basis, because there are always individual symptoms.

What relations and activities makes you feel better? 
I’ve never been one for support groups. I’ve tried them, and I can’t connect, as most people acquire/develop later in life. It’s very hard to find someone who understands the extremity that’s been my life. I find myself envious of them, for having the time they did while feeling normal. I get angry, and then after the anger I get sad. Because they had it, a normal life, and it’s gone. I’ve just had one life, and I do what I can with it. The best support I’ve had has been my family, and my boyfriend.

When did you join the Fibromyalgia Awareness blog / the blog's Facebook Page? What do you think about our awareness initiative? 
Around March, a friend who also has Fibro/CFS was a fan of your Facebook page, and the rest is history. I think it’s HUGELY important to spread the word. With what we know about “invisible illnesses”, the stigma of being disabled should be gone. 

Just because I can walk, and lift heavy things IF I MUST, doesn’t mean I don’t deserve a handicapped parking spot. I’ve broken down crying at the target parking lot because my body hurt so much, but I needed my medicine, and the closest spot was more than halfway to the back. I’m not sitting around eating 20 hours out of the day. I am dieting, I am struggling, and I deserve respect just as much as any other disabled person does. And that won’t happen, until the stigma of invisible illnesses is gone.

Interview published on 31st August 2013
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  1. Thank you for reading my story. I hope it opens some eyes.

  2. Thank you Grace for sharing your life with us I appreciate hearing I am not alone or crazy with this.

  3. Hello Grace,

    As I read your story I wonder did my Fibromyalgia start during puberty. Your story was enlightening. Thank you for sharing.