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The Pain of Living With Fibromyalgia

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Living with chronic illness is a day to day deal. Every little decision you make, will impact you for weeks or months. You never really know how you’re going to wake up, but in my case I do. The pain never gets better and generally only gets worse.

Fibromyalgia is an all over body chronic pain condition, however, each person’s fibro is different. In my case, I am in pain in every part of my body constantly. Aching pains, stabbing pains, burning pains, nerve pain, radiating pain, all of the different types of pains I have as well as hundreds of different symptoms that also come with fibro. The main constant pains are chronic headaches,  as there’s never really a time where my head doesn’t hurt. Along with stabbing and aching pains in my abdominal area (I also have endometriosis and adenomyosis — so lots of endo pains and symptoms also); my neck, back, shoulders and lower back are by far the worst out of everything. I have TMJ pain, nerve pain shooting up and down my legs and arms and many, many other pains.

In my case, not one single medication takes away my pain or even helps it. Not even the strongest opioids work, so there is no point in being prescribed them because it doesn’t help and it would just do more harm than good. I have tried everything under the sun to have even the tiniest bit of relief from the pain, but nothing works, so I suffer every second of every day in excruciating pain and there’s nothing I can do about this. I have seen countless specialists, and the one specialist who has ever been able to help even a tiny bit won’t learn how to help all of my pain and symptoms for at least five years because my pain is so extreme, they haven’t learned about it yet.

This excruciating pain makes work and life incredibly hard. I still have to work as much as I can to survive and afford all of the medical appointments. Trying to keep a brave face at work and around friends and family is hard. You never want to show pain in front of anyone in case they think you are looking for attention or it makes them uncomfortable. While this is most certainly not the case, many chronically ill people would agree that they have at least experienced those thoughts before. Trying to maintain friendships is hard.

No matter how much someone understands, they still don’t know the full extent of your pain unless you see those people in your darkest moments and still even then, no one will ever understand how much pain you are truly in. We can’t make plans as we have no idea how we will be feeling that day and if we do, every decision we make leading up to that day, will impact on how we are feeling. The hardest part is when the day does come and we are in too much pain, the feeling of letting your friend down is awful. And knowing that if we do go out, we will be in twice as much pain when we return home and it will last for days, weeks or months. The guilt we feel for missing catch ups, events and work is sometimes unbearable. We live with this guilt every day and along with the other emotions and pain we feel, it is debilitating.

I know our posts about chronic illness may be annoying to some, but when it all becomes too much, it is a way of expressing ourselves and sharing that we aren’t OK.

Fibromyalgia is a torturous chronic illness. It takes everything away from you. Your ability to make a quick decision if you wanted to jump in the car and go on an adventure, the ability to maintain friendships, the strain on relationships when you are constantly paingry, the ability to do housework, shopping or any type of physical activity, the ability to support the ones around you, the ability to make plans and the ability to do the things you once loved. It makes every decision we make have to be based around fibro and how it will impact our body.

The things I would want my friends and family to know is; I am in pain 24/7. There is not a second that goes by that I am not in severe pain and I know I hide it well but when I get home, I fall apart. The mental strength it takes to constantly live with chronic excruciating pain is unbelievable. Every day it gets harder and every day I have to push to make it through the day. Just know, I wish more than anything I could catch up with my loved ones more, I wish I could make it to every single event and I wish I didn’t have to base my day around my chronic illness, but I am lucky I have the most supportive friends and family and it means the world. I push through because of all of you and every little bit of support means more than anything.

For anyone with chronic illness struggling to get through each day, keep fighting! We’ve gotten through the hardest of days. You’ve got this! Xx

Getty image by Katerinjiyuu

Originally published: February 22, 2021
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