Stop telling people that you “think” Fibromyalgia is a symptom of something, or a “catch-all” label for something that can’t be otherwise identified. If you are a public speaker, or have any kind of a public following, you are not helping us by doing that. If you are not a physician educated on the topic, or a patient living with this SYNDROME, just stop. It has taken many, many years, and a lot of blood, sweat, and tears, to finally be taken seriously by the medical community and even a portion of the public, and it is a very definite individual diagnosis even qualifying as a stand-alone application for disability! Quit trying to drag us backwards.
Educating yourself on this topic is not all that difficult these days. This is not about conjecture and philosophizing about the causes of it. You can speculate all day long about why you think it happens to *some* people but that does not make it any less legitimate, nor does it invalidate the diagnosis and make something unworthy of proper medical recognition. It is a neurological condition. Some choose to use medication to manage it, and some of us choose to stick with natural means, but it does require management and treatment either way.
When someone with a public following makes a proclamation that they think something like FMS is some kind of emotional issue, it only makes life more difficult for those of us trying to manage it in our lives. You are validating completely uneducated and critical friends and family of ours and creating more problems that we don’t need. Do us a favor and just don’t try to speak on the topic if you can’t be bothered to catch up with current info. I am not advocating for anyone to not deal with emotional damage if they have it. Please just do not label Fibromyalgia as being solely an outcropping from something like that. The two issues are distinctly individual, and can exist independent of the other. Even if some traumatic event was the trigger that set it in motion, mending emotional pain is not a guarantee to end the manifestation of the syndrome. It shows up quite often in autoimmune patients for a reason. Nobody has figured that out yet but it IS on the suspected list for being autoimmune itself. Stop making our work harder for us.
Rheumatic autoimmune disease in particular has a habit of presenting symptoms that are unpredictable. They can sneak up and take you to the ground unexpectedly, and mercilessly. (For some people that is quite literal, not just metaphorical.) I asked some of my friends for input on this because I’ve been mulling the topic over for a few days now, and I wanted to hear perspectives. I am (anonymously) including some excerpts from that conversation here. I hear them echoing my own experiences and frustrations.
The typical patient – anyone with Lupus, RA, Fibromyalgia, Lyme disease, Cushings, MS, Sickle Cell, Dysautonomia, Myofascial Pain, Chronic Fatigue, any Chronic pain… is always dealing with symptoms. The amount, degree, and intensity varies, but we are nearly always symptomatic. With a disease like Lupus, we don’t even have a true remission. We can achieve clinical quiescence but to be totally symptom-free is not really a…
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