Tell us about your journey to be diagnosed with fibromyalgia

I was unofficially diagnosed at 25. I had all the symptoms. Poor sleep, all over pain, brain fog, headaches, exhaustion that wouldn’t shift, even with sleep. The whole nine yards.

It took a year for me to self-diagnose because my doctors were very unhelpful. I spent a whole year (which is very rare, as the minimum time frame to be diagnosed with fibro is two to three years). I took many trips to

 to the hospital, the homeopath, and my doctor, all of whom didn’t really help. When the urine tests, the x-rays, the ultrasounds came back negative, I couldn’t understand. How was I feeling so awful, when everything, in the medical sense, looked fine? I got online and researched all the symptoms and finally discovered the name: fibromyalgia.

This was after researching things like MS, which sounded similar, but wasn’t what I was experiencing. The clouds parted and for a while, I was relieved to have a name for it. I was glad that I wasn’t going nuts. I was glad to be able to tell future doctors what I had. I was glad to know that fibro wasn’t progressive, like RA is (even though, sometimes it feels like it is). I was glad that you can’t die from it, like you can with cancer (but some days are really bad and you want it to end). Then I got depressed a little. Still am, but it swings off and on. Dark chocolate helps!

About two years ago, I discovered the Highly Sensitive Person (HSP). So that explained a lot about my past, how I was affected by my stressful early life. I moved a lot, when my mom went back to school full time to study law and then when she had to find a job.

Do you have any other health conditions?

I luckily do not have any other comorbid conditions like RA, Lupus, or Endo. In that aspect, I’m blessed. However, I do have IBS-C and occasional tinnitus. Tinnitus is more pronounced at different times of my cycle or if I try new medication (or come off it). I also notice it’s more likely when there’s lots of stress or if I’ve had very poor sleeps in succession.

What is the most challenging aspect of fibromyalgia for you?

The most challenging is the change of symptoms. There’s no real pattern. Every day is a game of roulette. It makes schedules and planning hard. Appointments have to be made flexible. Everything impacts each other. The weather and temperature. How much quality sleep I get. My stress levels. If I have a cold. My menstrual cycle. How much I exercise. Everything’s all tied together and all affect each other in their own unique way. It’s very hard to do many things, like travel, something I’ve wanted to do for the past six years.

Has fibromyalgia affected your relationships?

I’m an introvert by nature and prefer my own company. I don’t have many friends. I do email a few people, but moving around as much as I did as a kid, I never really had time to make good childhood buddies. Besides, my relationship with my mother has been poor since my diagnosis. I resent her for the past, for the stress that has caused my illness.

Due to it being more difficult than it should for someone my age (a thirty-year-old), because of chronic pain and fatigue, I don’t get out very often. I go get groceries and that’s about it, in terms of ‘socializing’. My mother is an Adult Child of an Alcoholic (ACOA) and this resulted in her being a chronic talker and parentifier, telling me all her childhood woes. Only recently did I learn what this meant: she was emotionally immature and lacked boundaries. I suspect she has a narcissistic personality disorder as well.

How do you cope on bad flare days?

I find laughter is the best treatment on bad days. Watching comedies. Listening to funny podcasts or radio shows. Reading funny articles. Watching people’s antics on Tiktok or Youtube. Checking out the funny tweets on Twitter or funny feeds on Facebook. Anything to help distract from what’s going on. I think everyone, regardless of chronic illness or not, should find something to laugh about in these dark times.

I have lots of bad days, after a poor night’s sleep especially. However, I just try to push through, tell myself I’ll eventually be back in the comfort of bed. I end up spending the whole day binge watching shows on Acorn TV, Netflix, or Prime. Bad days mean I feel, and think, like a zombie. I can’t function very well and I tell myself to take it easy.

What’s the best advice you’ve received about life with chronic illness?

The best advice I received was to stop people-pleasing. Stop pushing yourself. Take more time for you. Don’t settle for toxic people or situations. Learn boundaries and stop being so hard on yourself. I think a lot of chronic illness patients blame themselves for something that’s a) not their fault for getting and b) that they have no real control over. They can do all that’s suggested, exercise, meds, supplements, relaxation, diet, proper sleep, meditation, but sometimes it’s just something you can’t control.

The one thing I’ve learned since having this condition is that I’m hardy. Despite the pain and fatigue, I still manage to write my articles or work on a piece of fiction (which never ends up published because I can’t seem to finish a novel). I still manage to do webinars, read e-books, blogs, and listen to podcasts on writing or fibro. I know a lot of people who can’t even do these things.

What’s one good thing that’s happened since you were diagnosed with fibromyalgia?

The one good thing that has happened since my diagnosis is that I’m not homeless. I do have accommodation and I do have some income coming in, via my mother. It’s not ideal. However, I remind myself that many other people with chronic conditions do struggle to meet their family’s basic needs and some even end up in worse conditions that aggravate their condition, or make them sicker. 

What inspires you to keep going?

The one thing that inspires me to keep going, despite the pain and fatigue is just to try to be more open and accepting of things. Have more faith and be less concerned with the future and how bad it might be. I’m prone to anxiety and worry-Highly Sensitive People are more so, compared to non-HSPs- and I think many chronic illness patients, particularly those with fibro, are ‘worriers’. I think this condition is trying to tell us to lighten up and not sweat the small stuff.

Worrying about everything does nothing. Worrying haphazardly gets you nowhere in life and with your condition. It just makes everything worse. Only focus on what it is right now. That headache, those sore shoulders, poor sleep, or that back ache. Don’t worry about the next six months or the year ahead. Don’t worry about the missed events or the people who will dump you when you tell them what’s up. It’s not worth trying to control something out of your control.

If you’d like to know more about Jade, you can check out her website at jadebaldwriter.weebly.com.