Many people with chronic illnesses refer to having "Alphabet Soup". Once you get diagnosed with something, you figure out the abbreviation for it and the term becomes a part of your regular vocabulary. After that, you usually start finding other disorders that go along with the one that you have, thus creating your Alphabet Soup.
When you meet others with chronic illness, this is how we short hand communicate what we're dealing with. My RA (rhuematory arthritis) mom friend also has FM like me (Fibromyalgia). My particular soup is hEDS-FM-CFS (hypermobile ehlers danlos with Fibromyagia and Chronic Fatigue Syndrome.
The bottom line is that we all have various aches and pains because the muscles are working too hard to hold everything together, due to weaknesses in the makeup of our bodies. I have met so many patients who have become experts in their conditions, especially because we have to be our own best advocates after going through two decades of having unhelpful doctors question what we're reporting for symptoms, being ignored, or being told to just exercise more regularly.
I realized this again recently, as I was watching a documentary recently released by Lady Gaga called "Five Foot Two". She has recently shared a diagnosis of Fibromyalgia. There's a part of the film where she is having muscle work done on her leg and hip. She winces in pain as the therapist massages out a painful kink in the muscle, and then apologizes for crying on camera. I felt validated in my own pain as I frequently go for deep tissue massage, acupuncture, and cupping. Now I want to know what Lady Gaga is doing for treatment so I can investigate further!
Many patients that I have met over the years have also become experts on how to treat the various symptoms they experience and figure out what helps to make them manageable. With everyone out there trying to figure out what helps, I continue to have hope for better medical treatment in the future!
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