A Life less Chronic| Living with Fibromyalgia | My Personal Story

Being diagnosed with a chronic illness can be overwhelming and isolating, but you are not alone.

I was diagnosed with Fibromyalgia in 2016, after years of suffering from various symptoms that I didn’t realize were connected. My symptoms began many years before my diagnosis, with the main issues being pain, chronic fatigue, and a burning sensation in my joints and muscles. Over time, more symptoms emerged.

They say Fibromyalgia can be triggered by trauma or a highly stressful event. Looking back, I did experience an event that might have contributed to developing this condition.

In 2006, at the age of 29, I had a full hysterectomy. I was fortunate to already have three wonderful children. After my last child was born in 2006, I suffered from severe, continuous heavy periods. My GP referred me to a Gynaecologist, who gave me two options: have another baby (as pregnancy hormones can help regulate bleeding long-term) or have a hysterectomy.

After considering it for six months, I chose surgery, knowing my body couldn’t handle another pregnancy. The surgery went well, except for a blood clot a week later. Six weeks after the surgery, my histology showed cancerous cells, but luckily, it was caught in time and required no further treatment. One issue was resolved.

However, the following years brought a series of symptoms that seemed unrelated to any specific condition, like playing a game of connect the dots.

The first dot: I woke up one morning with severe back pain, which left me unable to work for almost two years. Scans, blood tests, and MRIs showed nothing. Was I losing my mind?

The second dot: chronic fatigue. Some days, getting out of bed was nearly impossible. I would lie in bed, mentally arguing with myself to get up. Sleep was not an option either, as the pain in my back, hips, and muscles was unbearable.

Thankfully, I had an incredibly patient and understanding doctor. I often felt like I was imagining all the pain and symptoms. At one point, I would wait weeks to see my doctor and then unload all my symptoms on him at once. He truly was, and still is, a diamond.

In 2016, I was referred to a rheumatologist, a pain specialist, and a neurologist. With their combined expertise, I finally received a diagnosis—actually, four diagnoses.

The neurologist diagnosed me with Meralgia Paresthetica, explaining my hip pain.

The pain specialist administered three nerve blocks for my hip problem and diagnosed me with severe Fibromyalgia, as my widespread pain score was 13 (the diagnostic criteria for Fibromyalgia is between 7-8). I also have three perineural cysts on my thoracic spine, which are rare in that location. I opted not to have spinal surgery and continue to monitor the condition.

The rheumatologist diagnosed me with Hypothyroidism (auto-immune) and helped with medication and pain management.

Now, in 2024, I take a daily concoction of medications to manage my symptoms. New symptoms continue to appear, including burning feet, stomach issues, pain, costochondritis, dizziness, high blood pressure, and burning joints. Chronic fatigue and pain are my daily norm.

What advice would you give to others dealing with chronic illness?

Dealing with a chronic illness can be incredibly challenging, but here are some pieces of advice that might help:

1. Educate Yourself: Understanding your condition can empower you. Learn about your illness, treatment options, and ways to manage symptoms.
2. Build a Support Network: Surround yourself with supportive family, friends, and healthcare professionals. Joining support groups, either in person or online, can also provide comfort and advice from others who understand what you’re going through.
3. Communicate Openly: Be honest with your loved ones and healthcare providers about how you’re feeling. Clear communication can help them understand your needs and provide better support.
4. Prioritize Self-Care: Make time for activities that help you relax and recharge. This could include hobbies, gentle exercise, meditation, or simply resting when you need to.
5. Manage Stress: Chronic illness can be stressful, and stress can worsen symptoms. Find stress-reducing techniques that work for you, such as deep breathing exercises, yoga, or mindfulness.
6. Stay Organized: Keep track of your symptoms, medications, and appointments. This can help you and your healthcare team manage your condition more effectively.
7. Set Realistic Goals: Understand your limits and set achievable goals. Celebrate small victories and be kind to yourself on tougher days.
8. Seek Professional Help: Don’t hesitate to seek help from mental health professionals if you’re feeling overwhelmed. Therapy can provide strategies to cope with the emotional aspects of chronic illness.
9. Stay Positive: Focus on what you can do rather than what you can’t. Maintaining a positive outlook can improve your overall well-being.
10. Advocate for Yourself: Be your own advocate in healthcare settings. Don’t be afraid to ask questions, seek second opinions, or request specific treatments.

Remember, you’re not alone in this journey. There are many resources and people out there who can help you navigate life with a chronic illness.