Fibromyalgia is a chronic condition that is characterized by generalized fatigue, musculoskeletal pain, sleep problems, concentration and memory problems (also known as brain fog or fibro fog), and headaches among others.
The exact causes of fibromyalgia are unknown but risk factors include the following:
- viral infections
- genetics or a family history of fibro
- stress and trauma
In diagnosing fibromyalgia, doctors rely on the symptoms experienced by the patient and there is no specific test that can be conducted. It is therefore very common for patients to remain undiagnosed for many years even after meeting a lot of doctors.
The Living with Fibromyalgia community serves as a safe place for patients to connect with others who are also dealing with the symptoms of this condition including all the stress and emotional problems that go with it.
In this blog, we would like to introduce some of the new members of the Living with Fibromyalgia community and talk about the experiences they share with fellow patients.
One of our new members go by the username MyPainIsReal, a 33 year old mother of two. Apart from fibro, she also has Hashimoto Thyroiditis and Thyroid Cancer, which is fortunately two years in remission at present.
Her username is noteworthy since it is very common for other people to doubt what fibromyalgia patients like her experience.
In her first post, MyPainIsReal highlighted another hidden pain people with fibro are living with.
My life is literally just ticking by and all I can do is sit around and watch. I’ve tried everything and nothing is working. I have each symptom of all my conditions and they are severe. I’m a burden to my family and the thought of waking up each morning is so dreadful to me.
Being the parent of a toy Aussie dog named Bella, one of our new members calls herself AussieMom. She has been suffering from fibro for many years along with other conditions such as arthritis and degenerative disc disease. She has been checking the site for a while until she finally decided to join and introduced herself to the group.
AussieMom underwent many surgeries including in the neck and thumb with many more expected in the future for her feet and possibly shoulders. She used to be a pianist and she feels that this condition has stopped her from doing so many things she enjoys.
…I feel like fibromyalgia has stripped away so many things that I used to love to do, and sapped me of my energy.
For AussieMom, it is important to talk about what she experiences with people who would know exactly what she is saying.
…how on earth can people that don’t have this condition really understand? That’s why I’m here. I wanted to meet folks that are going through this. I wanted to know I’m not alone.
It is nice to be able to let go of these feelings without being judged or pitied.
Other members were quick to welcome AussieMom. One member said she could relate to the different conditions AussieMom is dealing with. Another one suggested she read other members’ posts so she wouldn’t feel alone in her pain. More importantly, she was encouraged to share what she feels anytime.
After suffering from bone and joint pain for a long time, Whatchamacallit was diagnosed with fibromyalgia on May 18, around six months after being diagnosed with Sjogrens in November.
Although the diagnosis made her feel frustrated, she also felt validated and is thankful for those who believed her pain is not just in her mind. Also, she’s thankful for having found the Living with Fibromyalgia community.
There is no easy solution. But there is community.
I’m glad I found this site, and got to share a little of my fibro-story.
Other members completely understood what she posted about feeling validated since they too were doubted by friends and medical professionals alike. She was assured by fellow members of their support and was encouraged to ask any questions she has.
Being constantly in pain can be really debilitating to anyone especially when it has significantly altered a person’s day-to-day life. Not being able to do the things that have been our source of energy and happiness can definitely cause emotional pain. These sufferings become so much worse when there are people who give insensitive comments or doubt what they experience.
The Ben’s Friends team feels fortunate to have the ability to provide them a space where they can freely express what they feel. Through the community, they are able to find people who listen and offer comforting words, people who know exactly what to say.