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Tips, Information, and Insights from the WebMD Fibromyalgia Community

WebMD Fibromyalgia Community: What I Want You to Know About My Fibromyalgia

If someone were to make a list of misunderstood diseases and conditions, fibromyalgia would be a leading candidate to be included in that list. Family, friends, co-workers, and the world in general often don’t seem to understand how fibromyalgia affects every aspect of daily life for someone who has fibromyalgia.

So what do people with fibromyalgia wish others knew about their condition, and what it is like to live with fibromyalgia? People in the WebMD Fibromyalgia Community have created their own list and they’re sharing it with others who have fibromyalgia. Dozens of people weigh in, and these are some of the most universal messages they want to share.

  1. Yes, I may look perfectly healthy. But I’m in near-constant pain. I’m not pretending to be in pain.
  2. Yes, I need all of these medications. Without them, the pain would be unbearable, and I could not accomplish anything.
  3. My pain and fatigue levels can change by the hour. I might feel fine right now, and by dinnertime feel like a truck ran over me. Sometimes, I just need to go to bed.
  4. My cognitive function is often slowed. I can’t think or react as quickly as I used to. That doesn’t mean I’m stupid.
  5. It’s scary to have a condition there is little information about and no cure -- and for which you have to be your own advocate.
  6. I cannot make commitments like I used to before I had this condition. Please don’t get angry if I have to cancel something at the last minute.
  7. If I do a lot one day, I’ll probably pay a price for it the next day.
  8. Don’t try to fix me. Instead, please understand and accept me as I am. I will do much better with your love and support instead of criticism and isolation.
  9. I’m not lazy. I have so many things I want to do, but the pain and fatigue cripple me.
  10. I’m trying as hard as I can.

 

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