My pain started five years ago, a few months after a shoulder injury. I had a torn rotator cuff, frozen shoulder and calcium spur. I became intolerant to all medications, so I had to reduce my meds which increase my stress. I also have developed complex regional pain syndrome (CRPS) - which has all led to Fibromyalgia.
It’s affected me in many ways; I’m reluctant to make plans to go out because I don’t like to cancel and let people down. If I do go out, I often don’t enjoy it because of the pain and tiredness I feel. It affects my marriage and all other relationships.
I’ve tried numerous pain management strategies, acupuncture, alternative doctors, neurologists, counselling, Emergency departments, physiotherapists and rehabilitation programs. Counselling has been the most helpful, supported by mindfulness techniques. I also have massages when I can tolerate them and my husband and I go to Gestalt therapy together. I also do trauma release exercises and I practice meditation, reminding myself that this won’t last. I try to be more centred and not catastrophize.
The balance between good and bad days varies. I can have a few good days, even weeks and months. Then if my stress increases, my inflammation increases too, and it all starts up again.
On a good day I have reasonable energy with little or no pain. My anxiety is low and so I feel I’ve got myself back again. Consequently, I feel happy.
But on a bad day i feel black emotionally, despondent and in a lot of pain. I get little sleep, feel nauseous, and have limited mobility.
My sense of worth has been affected. I feel shame and guilt because I feel like I am a burden. Before, I was always confident and able to contribute financially. Now I feel a deep sadness. I have pulled away from friends. I don’t have much to talk about - I feel detached, isolated. It’s very distressing for my husband, he can’t fix it. He feels like he’s lost the joyous part of me; we don’t have a lot to say to each other anymore.
I have become more of a negative person, which I don’t like. Not all the time, but it’s easy to get into that place. I can’t do long travel trips. Last time we did, it was too difficult. It pulls me back into a bad place, physically and mentally.
There have been positive outcomes. I have more empathy for people struggling with mental illness as I am now experiencing emotional pain. I read a lot and try to educate myself. I have to adjust goals around the immediate and be OK with that. I have improved my self-care, which is positive. I’m not sure about the future - at the same time, I try not to ponder.