It popped up in conversation the other day how people with fibro have an easier time reaching out for treatment from a provider if they have met them or had contact with them. I hadn’t considered that before. It makes a ton of sense though. To think of the maze most of you have been through, shuffled from doctor to doctor, trying yet another method that is supposed to be the one that reverses your condition, feeling like a test subject and treated like you are making up everything. Inside you feel betrayed, seeing other people with serious conditions get treated differently, getting better, getting comprehensive answers while you feel like you are trying to get out of a room but the exit door keeps moving.
Hearing the horror stories, it is no wonder I meet members of the fibromyalgia community who appear to have given up hope. It is tough not falling into a simple category.
To have that experience it is natural to then stiffen up and look at a new doctor with apprehension and to approach a new situation from a guarded perspective. The brain and nervous system can be wired to respond to new or uncomfortable situations by snapping into fight-or-flight mode, sympathetic response. In fact, this can be a huge trigger. Take a look at the abstract from this study:
“Fibromyalgia is a painful stress-related disorder. A key issue in fibromyalgia research is to investigate how distress could be converted into pain. The sympathetic nervous system is the main element of the stress response system. In animal models, physical trauma, infection, or distressing noise can induce abnormal connections between the sympathetic nervous system and the nociceptive system. Dorsal root ganglia sodium channels facilitate this type of sympathetic pain. Similar mechanisms may operate in fibromyalgia. Signs of sympathetic hyperactivity have been described in this condition. Genetic factors and/or distressful lifestyle may lead to this state of sympathetic hyperactivity. Trauma and infection are recognized fibromyalgia triggers. Women who suffer from fibromyalgia have catecholamine-evoked pain. Sympathetic dysfunction may also explain nonpain-related fibromyalgia symptoms. In conclusion, in fibromyalgia, distress could be converted into pain through forced hyperactivity of the sympathetic component of the stress response system.”
What does it mean? This means that going to try out a new doctor can not only make you stressed out, but it can cause you pain. It is a negative reinforcement system, like getting shocked every time you try to turn on a light switch; you just end up living in darkness because your brain associates light with pain.
This is why it is very important for health providers to reach out and make contact with the fibromyalgia community, to show that they are people who care and that they want people with fibromyalgia within their clinic circle. It is why I and my partners try so hard to focus on having a calming, comforting environment, and offering group setting where people know that they belong. If you know you belong in a place that sympathetic response doesn’t get triggered, and it can start unwiring the negative connections. Being around people who accept you and your pain can actually start healing you.
What do you think? This blog is meant as a community for you, where you belong, and you can speak out, no matter what you have to say. I would very much like to see what you have to say 🙂