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Want to talk with others. Have you found relief from CRPS?
Chronic Pain | Last Active: 6 days ago | Replies (236)Comment receiving replies
Cannot decipher the sentences after you said
“ I found a PM doctor- “
go back & read how spell check scrambled your words.
I had CRPS & Top doctors were stumped. The only event was a steroid shot in the ankle & my foot and ankle turned blue & mottled with a white giraffe like pattern all over & it was ON FIRE but felt cold!
After a few sympathetic blocks every 6 months next to the lumbar spine, the shocks, jolts & burning subsided forever!
That foot & ankle is still hypersensitive to touch, even like a small pebble in my shoe can cause burning sharp pain!
These sympathetic blocks were not available at Mayo in Jacksonville, so I went to Rochester Mayo.
In regard to the PM “shots” they could have been steroid shots & not a sympathetic block.
Steroid shots cause weight gain, affect your adrenal glands, high blood pressure & can cause damage to your body. Those can help a few days to a few weeks.
The Sympathetic Block lasted half a year!
So 2x a year to get full relief was a good send. Mayo said the TEST for sympathetically maintained pain, is also the treatment!
It worked in minutes!
My foot turned pink, warm & no shocks!
I did all the treatments you tried, none worked to stop the sudden burning shocks except the Sym Block.
(For others reading this, sympathetically maintained pain, just means your fight or flight response to an injury never shuts OFF!”
It wants you to get off that injured area, to prevent further damage.
“It continues well after the initial injury has healed.”
It does NOT mean, you want sympathy or it’s in your head. Thats why physical therapy doesn’t last & some PM shots often don’t last & can even create the sympathetic system to increase pain due to another jab with a needle into a very vascular area,
Anyway that’s what I learned about CRPS.
To me, it was worth the pilgrimage to Rochester to figure this out. They did.
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Thanks for responding with your insightful info.
Initially, I had corticosteroids shots into the ankle, bilaterally. Even with injection to numb the area, it was helluva painful, and I swore off any future shots into the foot area. When numbing pain wore off, the ankle became the focus of level 10+ pain that made the fibromyalgia grip my entire body, gave me chills and shaking --THAT is how powerful the pain was, to even feel it viscerally. And the steroid did nothing for the pain. The CRPS pain is 24/7 --- as in constant, never stops, always THERE. Hot nerve pain is ever present. Pain level depends on so many factors, but the lowest is about a 5-6, with the highest being 8 to 9 (out of ten). My constant companion, whether sitting, standing, walking, lying down....and it has traveled to include the lower leg up to above the knee. But the most painful is the ankle, bilaterally, encircling the entire ankle front to back, and top of foot.
My research revealed that sympathetic injections are not effective with everyone. You are fortunate that you benefited from them. Not that I enjoy the CRPS -- just can't undergo what you've encountered with being injected in lower spine area. That's what the first PM doctor proposed and it is definitely a big "no" for me since major issues exist in my lumbar area. I did not want to mess with that.
As for PT, the purpose is to keep affected area from atrophying, and I'm all in for that. The incredible therapist provided relief, and I purchased a slanted board like the one at the PT centers, to stretch the calf muscles and ankle area several times a day. The board is conveniently located in the family room right next to the kitchen. I also continue the foot-ankle moves/exercises at home. You are correct that "...PT doesn't last...", at least not to the same degree as what's accomplished while undergoing the skillful manipulation, etc of a highly experienced therapist. That's why I continue with my own therapy at home.
I wish that I could turn back time, back to June 2021, to when the harsh fall onto the hard concrete floor inflicted such a change in what was my life at that time. But I can't...