I’m 20 and I’ve only been diagnosed last year. But I can’t remember a time when I wasn’t in pain. The worst was from mid 2015 to mid 2016. I’d just graduated and moved to a new city. I didn’t have a car, so I walked everywhere. I walked to school, which was an hour walk, and I walked to work, which was only twenty minutes. My job description was “Runner” so it wasn’t a wise choice and most days, I would cry and squirm in pain, trying to find a position that didn’t hurt. I had to move back home when my lease was up so I could rest a little more.
I started working in a grocery store and it was probably more painful than being a runner because it was easier for me to move quickly all the time and deal with the pain later. But here, I was just standing and the pain was constant where I could hardly do my job. I felt useless (I still do). I felt like I didn’t deserve to work for my employer because I was unable to give my awe.
I was blessed when my husband suggested I quit my job and focus on finding a specialist and resting. They were honestly beautiful words to hear from someone I love so much. But I still feel the same. I know it’s a matter of trail and error, but I wish people around me would understand that there are some things I don’t feel up to doing. Like I can’t help the headache I get because of the ache in my neck, or the light is too bright, or it’s too loud or my stomach hurts so I don’t want to leave my house. I just joined and want to be a part of a community that I know understands.
Thanks for reading a bit of my story,
Wow what a story. I am so sorry you’re dealing with this. You’re sooo lucky to have a husband who believes in you and let’s you rest. I have found it very hard to find someone like that. I’m sure you will see on this site of me telling my story but I was diagnosed with a rare heart disease at 14. By 16 I had a Heart transplant. I then did so good and loved working until I turned 25 and was told my kidneys were failing due to my main anti-rejection pills. I was told I would be on dialysis and my mom immediately said I will do it! Sign me up! I went through 3 months of dialysis and had the transplant. A year after my mom finds out she has MS and a year after that I developed fibro and lost my job. The pain was and can be unbearable. I’m 36 now and left my job in 2009. I love working and to be my age and not be able to afford things and no work really bothers me. I know exactly how you feel. You may find something out there that you love doing and are able to do. You will adapt. You really are lucky to be young with a husband who is amazing. There are so many other people on here who suffer from fibro. We understand and if there is anything I can do please don’t hesitate to contact me.
You are very lucky that you have a great support system. Use it but dont abuse it. I have found an office job i like that doesnt require that much movement. Maybe an office job like a receptionist may be a good thing. I suggest finding reasons to move even if it is small. I am 21 and have been dealing with this for 6 years. I have learned that most people dont understand fibromyalgia even if they do research. What has helped my friends and family was finding someone else who has fibromyalgia and having them talk to your loved ones. For instance my mom has been nagging me about my weight for many years but lately it has been getting worse. Recently one of her friends that is on some similar medications as me told my mother that lyrica makes you gain weight and makes you want to eat more. My mother apologised for the nagging and it made us a bit closer. Good luck!