By:Erin Migdol
Via-The Mighty
Fibromyalgia is typically thought of as an “invisible” illness. But what if you look closer? What’s going on behind the brave face, the body that to others appears “fine?” Often, it’s days spent on the couch, feeling too nauseated to eat, excruciating nerve pain, and pushing through it all while few people see your struggle — that’s what fibromyalgia looks like.
We partnered with the National Fibromyalgia Association to ask our followers to share a photo of what their fibromyalgia looks like, and what symptoms they were experiencing in the photo. Though others may think you “don’t look sick,” if they take a closer look, the pain, fatigue, and strength it takes to get through it all becomes clear.
Here’s what the community shared with us:
1. “We had to leave about 10 minutes after this photo was taken because of the excruciating pain I had throughout my entire body. I was ecstatic when a part of my body would go numb so I had a little reprieve from the pain for a few minutes. My hands couldn’t grip a bottle of water, I could feel every step I took throughout my entire body. I was on sensory overload, flashing lights causing a terrible headache and the noise causing my shoulders/neck to tense up. All while having 11 medications in my system, including Tramadol. If we get to go again, I’ll have to get a wheelchair.”
2. “In this picture my service dog is actively tasking. She has alerted to my problems with balance, either a sign of weakness from fibro or an oncoming syncope episode, is giving pain relief to my aching feet and ankles, and is warming my feet due to a Raynaud’s flare up. Fibro has taken my independence, and now I depend on various medical equipment, medications, family/friends, and mostly my service dog to stay safe. I’d be homebound without my dog most days.”
3. “This is my life with fibro… nerve pain, nausea and exhaustion.”
4. “This my wife all day in bed. She’s in pain all the time.”
5. “Migraine, fatigue, bone-deep pain, nerve pain, brain fog, too weak to sit up or stand, cold sweats, severe abdominal cramps, severely nauseated.”
6. “Fourth day of migraine, nerves are pinging, right leg and arm are numb/weak, and the pain is screaming at me from every fiber of my being. Nothing seems to relieve my symptoms, but I will continue with heat packs and kitty cuddles. Trying to tempt my body to be still. Even the dark and quiet of night is loud and obtrusive for me most nights…”
7. “Exhausted, surrounded by stuff because I have to rearrange my room. Not for fun, but because my neighbor likes to blare his music just loud enough that the vibrations exacerbate my pain (dorm life FTW). I got so fed up today I used all my spoons to move my bed to the furthest wall…”
8. “What you see on the outside: A woman smiling and healthy. But on the inside there is a woman who didn’t go to sleep until around 3 a.m. because the pain wouldn’t stop. A woman who pushes through the tears to have a normal day just so I can spend the next in bed recovering. This smiling woman in the picture is me, and at the moment it was taken I am standing in front of the hospital. (They had a living nativity for Christmas.) I had more tests.”
9. “This is what fibromyalgia ‘looks like.’ The last few months I’ve been feeling pretty good, but these last few days I’ve been battling massive fatigue. I’m ready to go back to bed, before I even get out of bed. Last night I slept 10 hours and took two hours to get out of bed this morning. My body has been stiff and achey to where I can barely move around my house to get anything done… my elbows are also getting pressure around the funny bone, making my arms feel like they’re losing circulation.”
10. “I was at a friend’s birthday gathering a few days ago… was so fatigued that the pool table started to look like a comfortable bed. And I was overheating and had a fever. I struggled to stand… And I struggled to keep the happy ‘I’m OK’ mask on… but I didn’t want to let all my friends down so I forced myself to participate. Then towards the end of the night I started to fall asleep so my fiancé took me home in a taxi. The next day I was so exhausted and in a lot of pain.”
11. “Trying to figure out how to get through the fog and pain to reach the end of the day having achieved something.”
12. “When I try to massage some of my horrible muscle knots, this is what happens.”
13. “I was diagnosed fibromyalgia in 2011. This is a picture of me and I hardly ever work out because the pain is too much. All of this was gained from carrying tension and clenching from the horrible pain every single day. My fiancee thinks I’m strong and capable of anything, but she and no one else knows how much I mentally and physically suffer every day, feeling like I’m moving in slow motion through a painful forgetful fog.”
14. “Local flare-up, sore and painful.”
15. “This is the invisible side of fibro — the side most don’t see. It’s a heating pad and a fan going at the same time. It’s having a book to read when painsomnia keeps me awake. It’s a notepad for things I think of at night because I won’t remember them in the morning. It’s having a morning and a night pill box because I can’t remember if I’ve taken my meds without them and an alarm. It’s Neosporin and Vasoline for the anxiety-picked fingers… It’s dust on the lamp because I don’t have the energy to keep up with every little aspect of cleaning like I used to. It’s all of this and so much more.”
16. “I’m choosing to show this ‘healthy’-looking photo of me from yesterday because the reality is that I don’t look sick. I almost never look sick. And that’s the worst part of this debilitating disease I’ve had for nine years — trying to explain to people how I can look ‘just fine’ while being so completely miserable. Trying to explain why I’m in twisting, agonizing pain that never goes away while looking ‘normal’ is a struggle in of itself.”
17. “Nasty bruises.”
18. “The face of [fibromyalgia]… is a face that hides what the body is feeling. I look like nothing is wrong. But I’ve just gotten out of the hospital because the medicine for FMS has made me so sick they had to take me off everything I take. Which was worse, the FMS pain or the pain from the side effects of medicine? But I smile, I push through, I work, I do everything I can to ‘look’ normal. The face, the smile, all just a lie for what dwells beneath. Pain, frustration, anxiety, fear, alone in the struggle.”
19. “Having to wear soft pants because rough fabrics like denim hurt my legs too much and having to use a wheelchair because the pain is too excruciating to walk.”
20. “Fibromyalgia is complete exhaustion, body and soul. It’s wanting desperately to go out and enjoy the sun but instead having to rest because if you don’t now, you won’t recover later.”
