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I have been dealing with chronic pain for a long time. I had a long journey looking for answers. I was finally diagnosed at age 49, in April 2019, when a genetic test confirmed classical Ehlers-Danlos syndrome (cEDS).
When I was little I remember the pain in my legs and feet after any activity, and I couldn’t keep up with my friends. My right arm would dislocate without any discomfort at first and for me, that was my normal. I used to crash and sleep all day, so I was considered lazy. The pediatrician just said that the pain in my legs was growing pains and that I was flexible. When I developed a hernia at age 10, I thought the pain was normal until I needed emergency surgery to repair it, the area became swollen and purple and the pain was so excruciating that I finally decided to complain about it. Every change in my body causes me pain, surgeries need wound care or antibiotics and the healing process is always extremely long.
At an early age, I had varicose veins that caused pain and unexplained bruises. I also had multiple painful lipomas. Due to past experiences with surgery, It took 20 years for me to have the lipomas removed. The one in my neck was affecting my throat, the surgeon found that the lipomas on my neck and underarm were attached to my glands. I had corrective surgery for my shoulder and carpal tunnel release surgeries. Those two surgeries brought some relief from the pain in those areas, but lots of tingling and numbness, and my shoulder is back to dislocating again.
After suffering a fall in 2017 my pain got worse and every joint in my body hurt. I started experiencing frequent breakthrough pain in my spine that would radiate into my legs, which is extremely debilitating. My migraines were getting excruciating, the burning pain in the back of my nose and the back of my head and neck. There is a constant loud ringing in my ears that doesn’t go away, the sensitivity to the lights, touch, noise, and strong odors. After an MRI I was diagnosed with trigeminal and occipital neuralgia. Now I have pain in my ribs that leaves me without air and keeps me up at night.
I need to be careful during the day and pace myself so I don’t make my symptoms worse, because at the end of the day I have extreme difficulty walking. The piezogenic papules that I have are extremely painful, it feels like I’m stepping on hot needles. The podiatrist didn’t know why they were getting bigger, she tried multiple treatments but nothing worked and the pain was excruciating. I needed some kind of relief so I ended up having surgery to have them removed, but every single time they came back causing more pain.
The pathology test indicated a connective tissue disease so I was referred to have genetic testing. I’m supposed to have spine surgery but it is not an easy decision. I learned that just because a doctor is the “best” doesn’t mean it is the best decision for me.
I have to advocate for myself most of the time. I try to do lots of reading when my mental fog is not as bad. I found a support group for EDS in Rochester, NY, and I met some beautiful people; it was good a support network and I hope when the pandemic is over we can meet again. I also found lots of information in online groups. I like to meditate, I started drawing again, it is a good distraction to manage depression and hostile feelings. I have tried to let go of everything that causes me stress or anxiety.Tags: advocacy, cEDS, classical Ehlers-Danlos syndrome, Diagnosis Journey, Support group, surgery
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