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12 Things People With Fibromyalgia Wish Others Understood About Their Pain

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Do you ever get frustrated trying to explain your fibromyalgia pain to people who don’t experience it? Though it can be described simply such as “chronic pain,” fibromyalgia pain is unique and much more complicated than just occurring chronically.

Sometimes your pain might be sharp, other times it might feel like constant stabbing. Friends and family might see you out one day and then unable to leave home the next. Symptoms can fluctuate making it hard for those around you to understand the impact the disease has on your life.

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Because of fibromyalgia‘s complex nature, it can be difficult for others to truly understand what it feels like. That misunderstanding can leave you feeling frustrated and even isolated from family and friends.

Since explaining fibromyalgia pain can be tough, we asked our fibromyalgia community what they wish others understood about their pain.

Here’s what our fibromyalgia community had to say:

1. Pain is individual.

“I wish everyone (including others with fibromyalgia) understood that fibromyalgia has such a variety of symptoms that no two cases are identical. Then, add into the equation any other chronic pain condition that fibromyalgia plays off of. This changes the equation altogether. Having numerous spine issues that cause nerve pain can cause a fibromyalgia flare all by itself without overexerting myself or stressing out.” – Tressia D.

“[I wish others understood] that my pain isn’t the same every day. So many different kinds of pain, and levels of intensity. I’m tired of, “but I know someone who…” No. We are not all the same and conditions can act differently from person to person because we aren’t clones.” – Rachel K.

2. Pain stops you from doing ‘normal’ things.

“I wish others understood how frustrating it is for me to not be able to do things I’ve done my whole life, like stand in a line or sleep on my back. It’s really crappy.” – Jenny L.

“I wish I could communicate to my family how hard it is to do life some days. I want to be able to do everything but it isn’t possible. I want to be able to run and play with my grandsons, but I’m limited. It’s so frustrating, but I can’t push myself. I just want my husband, sons and daughter in law to know I want to be able to do everything, but I just can’t. I don’t want anyone to think I am lazy or want attention. I guess I just need to accept myself and they will be able to eventually understand.” – @hondamom

3. Even if the pain changes, it’s always there.

“It is not just now and then; it is constant. It’s not even in just one place. For me, it is with movement, any and all movement and anywhere in my body.” – Janet M.

“My pain is always changing and moving, but it is constant. Just because the pain I feel today is different from the pain I felt yesterday, does not mean it’s “in my head” or not real.” – Lea A.

4. The pain can cause you to worry.

“My pain is not just inconvenient, it is PAINFUL. And the anticipation of pain is scary. I avoid things because I am afraid of how much it will hurt.” – Jennifer B.

5. Pain can change a lot.

“[I wish others understood] that when I wake up every day. I don’t know what level of pain I’m going to have. And that the pain level and locations change throughout the day. Just because you can’t see that I am in pain some days doesn’t mean I’m not. It means it’s my normal and I’ve been dealing with it for so long that I’m good at masking it.” – @sommerc

[I wish people understood] that it changes constantly. I was telling someone yesterday that it is hard to make plans even a day in advance because you never know what the next morning will bring.” – Debby D.

6. Physical pain can cause emotional pain.

“I wish that people understood the emotional pain that comes with the physical pain. The emotional pain comes from the loss of life as you once knew it, loss of friendships, loss of confidence. In addition to adding depression and anxiety. When you are in constant pain, it seems an impossible feat to stay free of depression. My doctor has told me medically, I am not depressed. As far as medication, I am on everything available to combat chronic depression. However, I live in a constant state of depression. It’s grief of the loss of your dreams and goals.” – @melinelson79

7. Pain can be invisible to the outside world.

“I wish others really understood that just because I look fine on the outside, I’m suffering from severe pain on the inside every day! The pain is real and is in different locations from day to day or could be from one minute to the next. With fibromyalgia, you never know how you are going to feel, whether it’s going to be a decent day or a day that you can’t even get out of bed!” – Nikki E.

“I want them to understand that I can look perfectly fine and not complain because this is my everyday normal. I hurt like I have been in a serious car accident every day from head to toe.” – @jmc035

8. Pain can be worse at certain times.

“I wish more people understood that I can be completely fine one moment and then a second later, be in excruciating pain. My energy can drop quickly, and I won’t be as animated as I was before. This can be in the span of minutes, hours, to days. I’ve had so many people tell me that my pain and fatigue seem to be ‘pretty convenient’ for me if I don’t want to do something because of it.” – Michelle C.

9. It isn’t something that goes away for good.

“I wish others understood when I feel better it doesn’t mean all my pain is gone or taken care of. It just means my pain and problems are tolerable today. Not gone, just not in my face.” – Jan F.

“I really wish my family and friends would accept that my illness is not going to go away, I’m not going to get better. Please don’t forget about me because I’m not able to do the things we used to do, because I’m still me and that shit hurts.” – Amy R.

“[I wish others understood] that I will never be cured. Chronic means for the rest of my life and although I appreciate the prayers, there is no miracle cure.” – Cynthia W.

10. It’s not just muscle pain.

“That it’s not your normal aches and pains. Whenever mention being in pain, my father in law likes to say, ‘oh yeah my back hurts too’ and things like that.” – @chroniclexi

“[I wish others understood] that my definition of ‘sore’ and ‘hurt’ and ‘pain’ and ‘tired’ are so much different than the ones people are used to, even the way I used to use the words. It’s so hard to explain it. I’ve tried to explain to people what it feels like and I think they think it’s a different kind of pain, something they can relate to or are familiar with. It’s like nothing I’ve ever felt or experienced before fibro. And it’s so hard to get that across. When they say, ‘oh yeah, I had the flu and I was knocked out for days.’ No, that’s not it. This is something you know will never leave you and that’s what’s so daunting.” – @dm298

11. It’s easier to say you’re fine than to talk about the pain.

“I’m fine is better than trying to explain something that you don’t know how to explain to help them understand.” – @CHarpRob

“I wish people understood that there is always some level of pain at any given time. There is never a pain-free day and if I tell you I’m fine, I’m lying.” – Amy S.

12. The pain is real.

“I’m not making it up and just because I carry on every day doesn’t mean I’m not suffering.” – @emsbutler

“[I wish others understood] that I am not making it up. If I say I can’t do something, it’s because I physically cannot. It’s not simply because I don’t ‘feel like it’ or because I’m lazy. This condition is stopping me from reaching my goals for education and business. I am afraid I will not be able to make a living. I have already been denied disability and am afraid to apply again. I don’t know what to do because I’m overwhelmed. I just wish my body would work the way I want and need it to. I am NOT making this up!” – Shana P.

While the people in our lives might mean well, sometimes it can be hard to get them to understand what fibromyalgia pain is truly like. Share this list with someone who might need help understanding what you’re going through when it comes to the pain you experience with fibromyalgia. If you are struggling or feel misunderstood, please reach out to someone you trust.

To learn more about what living with fibromyalgia is like, check out the following stories:

Originally published: June 17, 2019
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