Hi everyone!
Well, I am home from the hospital! Our small glitch in getting the medication turned into a little bit of a big glitch and it took a few days to locate and get it.
Right now I’m running a fever and feeling completely worn out, fatigued and achy as side effects from the infusion, which was expected. Overall, I am doing alright and I’m sure I will be feeling better and have my energy back in a few days once the medicine is out of my system.
I was so surprised to log online today to realize that while I was in the hospital this blog has reached 100,000 views!!!!!!
That’s amazing!!! Thank you to everyone who continues to follow my recovery and keep me in your thoughts and prayers. I will never have words to express my gratitude!
As you know, Friday was Veteran’s Day in the US. What most people probably don’t know is that RSD actually started with our soldiers! The first descriptions of it were documented about 125 years ago during the Civil War (1861-65) by Dr. Silas Weir Mitchell, a young US Army physician, who treated soldiers with gunshot wounds.
He described pain that persisted long after the bullets were removed the soldiers. He noted that the pain was characteristically of a burning nature, and named it "causalgia" (Greek for burning pain) which he attributed to the aftermath of their injuries.
Dr. Weir Mitchell, a neurologist, was very perplexed by what he was observing. He carefully documented how his patients, who were formerly otherwise healthy men, lives had been forever changed by this peculiar, burning pain, that he described it in one article as,
"the most terrible of all the tortures which a nerve wound may inflict."
He finished the same article by stating:
"Of the special cause which provokes it, we know nothing.”
Over the past hundred or so years, a lot of different names have been used to describe this bizarre syndrome- causalgia, algodystrophy, postraumatic dystrophy, Sudeck's atrophy, shoulder-hand syndrome, reflex sympathetic dystrophy (RSD) and more recently, complex regional pain syndrome (CRPS).
No matter what you decide to call it, RSD/CRPS is now known as a chronic, incurable neurological disorder in which the autonomic nervous system—the system that transfers signals from the central nervous system to various organs throughout the body—malfunctions, causing nerves to misfire and send constant pain signals back to the brain.
Today, research has brought us far from when RSD was first observed during the Civil War. It’s now known that RSD is not thought to have a single cause, but rather multiple causes producing a similar syndrome.
RSD most commonly develops in response to physical trauma-- About 65% of cases of are triggered by minor trauma (soft tissue injury, sprain, twisted ankle, venipuncture, etc). The next most common triggers are the result of bone fractures and surgery.
Current research suggests that an excessive immune response, possibly due to latent infection, may be the culprit, at least in some cases. It can also be brought on by spinal cord disorders, stroke or heart attack.
However, no matter what the underlying cause, the result is the same: horrible, excruciating nerve pain.
On the medically accepted McGill Pain Scale (0=no pain -to- 50=worst pain) RSD (causalgia) is ranked as the most intense and extreme type of pain you can possibly experience… above a bone fracture, cancer pain, childbirth and even above amputation!
McGill pain scale
Tom Haederle of Johns Hopkins University has described RSD like this: "If Hell were a clinical medical condition, it might look something like reflex sympathetic dystrophy."
I think anyone who has suffered with, or watched someone suffer from RSD would have to agree.… It’s that bad.
Dr. Schwartzman, who is internationally known for his extensive work and research in RSD/CRPS over the past 30+ years has said he doesn’t think there is a worse pain problem than RSD. I think he is right.
The bottom line is diagnosis is difficult, prompt treatment is critical and more research is needed.
When I got home from the hospital this afternoon as I was laying in my bed I saw a para-glider fly right by my window!!
His parachute was orange- which is the color of RSD awareness! I think it is a sign of hope... that one day all who suffer with this pain will have the freedom to soar above the mountains created in their lives by this illness.
It definitely looks like a LOT of fun!
Again, thank you to everyone who has helped me to gain my freedom from the pain of RSD, please continue to pray for all of those who are suffering and for a cure to be found, soon. ...100,000 views of this blog-- that is a lot of people! Imagine the awareness we could all raise, together?!
In God's love,
Jessica
"...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
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