21 things that doctors do not tell people about fibromyalgia

When diagnosed with any chronic disease, a good doctor should inform you about the symptoms, inform you about the prognosis and offer ideas for treatment or management of the disease. However, fibromyalgia was formally recognized only a few decades ago, and many doctors are still not familiar with the disease and how to treat it. On the other hand, it is difficult to really understand the physical and emotional symptoms of a person with fibromyalgia experiences on a daily basis if he has not been through himself. This can make it difficult for doctors to offer patients a complete picture of what life with fibromyalgia might look like after diagnosis.

This is what the community told us:

1. “They do not really understand fibro. This varies a lot from person to person, and treatment plans are different for each person, so there are a lot of things that doctors do not know about this disease yet. “

2. “[possible] losing friends because you can not go to all the events you used to. But the friends make him keep the understanding are amazing and super. ”  1

3. “I actually had a great doctor when they diagnosed me because his wife has it too. He told me the good, the bad and the ugly. He also admits that most doctors including himself do not fully understand how they should “.

4. “They do not [always] have other serious health problems, because ‘it’s likely to be just a symptom of fibromyalgia.'”

5. “There will be people who do not believe / do not care about their pain and exhaustion. You [may] have to hide the fact that you are even sick to protect yourself. “

6. “I still have to have a doctor believe me. They always say I’m too young. “

7. “Most doctors do not know enough about fibromyalgia to be able to treat it. They have no answers as to why I have so many symptoms or how to handle them. I have learned to keep up with current research to educate my doctors and be my own advocate. I learned to walk from my activities, and rest when I needed it. I learned to trust my instincts more, and do not worry about offending family, friends or providers with my answers and actions. “

8. “They do not tell you about the emotions you will have to face every day, the pain of the person you used to be, the guilt you will feel each time you let another down and cancel the plans, the fear of future and the feeling of being a burden for his family. Nobody had prepared me emotionally for life with fibro. “

9. “It affects everything. Something more than your body. What will affect your social life, your work life, your love life, etc. “

10. “Each person responds to treatment differently. You have to become your own advocate and look for any and all treatments to see if they work for you. “

11. “They do not tell you sensory overload is one thing and every sound, flashing light and smell that can affect on good and bad days.”

12. “Doctors do not tell you how difficult it will be to perform everyday tasks.”

13. “They do not tell you how likely it is that you have other problems because you have fibromyalgia, such as irritable bowel syndrome (IBS), restless legs syndrome (RLS) or anxiety. They do not realize how difficult it is to have this disease. “

14. “Most will not tell you to look for a rheumatologist who specializes in chronic diseases such as fibromyalgia; The specialists cost more to visit, but they are well informed about the condition. Also, do your own research about the disease, symptoms and treatments. At the end of the day, you are your best advocate; power with knowledge in any way possible. “

15. “You never have good quality sleep and always be tired. You will have trouble concentrating / concentrating on simple tasks that seem overwhelming at best. “

16. “Meds do not [always] work, but meditation, music therapy, art and sleep are your best friends!”

17. “I would constantly be questioned by everyone about the validity of my pain, my diagnosis and treatment plan.”

18. “Some people can improve with natural remedies. Drugs are not the only way to go. I am not saying that natural remedies cure. But, possibly, it can help relieve your symptoms. This may require a total lifestyle revision. But anecdotal stories of improvement abound. “

19. “[They do not prepare you for] the look of confusion and disappointment in your child’s eyes when you tell them you are too tired or in pain to play with them.”

20. “What is a 10 today [might] be a seven tomorrow because that threshold of pain – in which I could possibly not stand anymore – that keeps changing and only goes up.”

21. “There is a period of mourning that is different for each one … that grieves our previous life, emotionally, physically and psychologically. Depression and anxiety occur and can exasperate flares. It is a life changer, but not a-Ender life. Take your time to mourn, and then move on. Find solid support and be honest with yourself and others. It will be OK.”

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