I Was Diagnosed With Arachnoiditis – What is It?- NORD (National Organization for Rare Disorders)

So often, pain Dr’s refuse to give pain patients opioids unless they have invasive procedures, like nerve blocks and spinal epidurals. I had 3 epidurals in a 3 week span. 1 a week for three weeks. I also endured a plethora of nerve blocks in my neck and a sympathectomy, which I did not approve.

At first, I had an anasthsiologist that gave me Stellate Ganglia Nerve Blocks in my neck, week after week, for months. Afte this, I developed severe Spasmodic Torticollis and Causalgia Dystonia.

About a year later, a different pain Dr, wouldn’t continue to treat me with high dose opioids unless I went through more standard invasive, interventional, procedures. Every week, for 3 weeks, I had more Stellate Gangla Nerve Blocks, (other nerve blocks that I have to go back into my records to see the specific names), Botox all over my back + head and a Sympathectomy that I didn’t agree to. It was after these traditional, non opioid, invasive procedures that put me in a wheelchair. I thought it just flared my Full Body CRPS up. Now, it’s finally clear, that I developed Arachnoiditis as a result of these invasive procedures, specifically, the epidurals.

Arachnoiditis is more common in women! This is because of how common it is for women to get epidurals while for pain control during childbirth. Another invisible disease that can be dismissed as something “psychological” and not “real”. Our healthcare system is totally biased towards men. This isn’t hyperbole but based in factual reality.

What is Arachnoiditis and are these symptoms familiar to you? This condition is WAY too under diagnosed! So is, Ehlers-Danlos Syndrome, which I was diagnosed with last month. These go hand in hand and could be prevented if people were screened for EDS prior to giving them spinal epidurals. Our healthcare system needs an overhaul!!

Arachnoiditis – NORD (National Organization for Rare Disorders)
— Read on rarediseases.org/rare-diseases/arachnoiditis/

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