When you are diagnosed with any chronic illness, a good doctor should tell you about the symptoms, inform you of the prognosis and offer ideas for treatment or management of the condition. However, fibromyalgia was formally recognized only a few decades ago, and many doctors are still unfamiliar with the illness and how to treat it.
Furthermore, it is difficult to truly understand the physical and emotional symptoms a person with fibromyalgia experiences on a daily basis if you haven’t been through it yourself. This can make it hard for doctors to offer patients a full picture of what life with fibromyalgia might look like after diagnosis.
We asked our Mighty community to share some of the things doctors didn’t tell them about fibromyalgia. Let’s raise awareness and improve our understanding of the illness so doctors can better prepare their patients for the road ahead.
1. “They don’t really understand fibro. It varies so much from person to person, and treatment plans are different for everyone, so there are lots of things doctors don’t know about this condition yet.”
3. “I actually had a great doctor when I was diagnosed because his wife has it as well. He told me the good, the bad, and the ugly. He did also admit that most doctors including himself don’t fully understand it as they should.”
6. “I have yet to have a doctor believe me. They always say I’m too young.”
7. “Most doctors don’t know enough about fibromyalgia to be able to treat it. They didn’t have answers as to why I have so many symptoms or how to manage them. I learned to keep up with current research to educate my doctors and be my own advocate. I learned to pace my activities and rest when I needed to. I learned to trust my instincts more, and not care about offending family, friends, or providers with my answers and actions.”
8. “They don’t tell you about the emotions you will have to deal with every single day, the grief for the person you used to be, the guilt you’ll feel every time you let someone down and cancel plans, the fear of the future and the feeling of being a burden to your family. No one emotionally prepared me for life with fibro.”
10. “Every person responds to treatment differently. You have to become your own advocate and search out any and all treatments to see if they work for you.”
11. “They don’t tell you sensory overload is a thing and every sound, flashing light and smell can affect you on good days and bad.”
12. “Doctors don’t tell you how hard it will be to do everyday tasks.”
13. “They don’t tell you how likely you are to have other problems because you have fibromyalgia, such as irritable bowel syndrome (IBS), restless legs syndrome (RLS), or anxiety. They don’t realize how hard it is to have this illness.”
14. “Most won’t tell you to find a rheumatologist who specializes in chronic conditions like fibromyalgia; the specialists cost more to visit, but they are knowledgeable about the condition. Also, do your own research on the condition, symptoms, and treatments. At the end of the day, you are your best advocate; empower yourself with knowledge any way you can.”
18. “Some people can get better with natural remedies. Drugs are not the only way to go. I’m not saying natural remedies will cure you. But they can possibly help relieve your symptoms. This may require a total lifestyle overhaul. But anecdotal stories of improvement abound.”
21. “There’s a grieving period that differs for everyone… Grieving our former life, emotionally, physically, and psychologically. Depression and anxiety happen and can exasperate flares. It is a life-changer, but not a life-ender. Take your time to grieve, then move forward. Find solid support and be honest with yourself and others. It will be OK.”
For More Information Related Fibromyalgia Visit below sites:
Fibromyalgia Contact Us Directly
Fibro Women Blogs
Chronic Woman Blogs
Chronic Illness Blogs
Official Fibromyalgia Blogs