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Want to talk with others. Have you found relief from CRPS?

Chronic Pain | Last Active: Jul 10 6:30am | Replies (235)

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@sommerreign

Not all Mayo campuses are the same. Mayo in Rochester knows how to treat this! It’s called a sympathetic block, and it doesn’t mean you want sympathy, it quiets the sympathetic nervous system that has a short circuit problem & doesn’t know it should shut off!
So the block is the test for CRPS & it’s also the treatment 🎉
After the block, my pale cold painful foot, turned pink and warm for the first time in years!
The next day, I walked to the test room, with 0 pain and no limping! It was like a miracle!
It lasted 6 months but I just went to get another block, that allowed me to get back to work & enjoy my life!
Afterward that one lasted 6 months about, Mayo sent an order to a local pain management anesthesiologist & he did the future blocks locally.
Which was a relief b/c Mayo was a flight away!
So there is hope & it’s worth the pilgrimage up there.
I saw 6 “experts” in my city & they hadn’t a clue what it was, why or what to do.
One even said I might be faking it! Oh I cried when I read that & the Mayo doctor said, sadly many ppl are told the same thing just b/c it’s just so rare.
But -It was first noted in the civil war, and was called Reflex Sympathetic Dystrophy ~ An injured soldier complained of searing foot pain but they didn’t even have a foot anymore!
I’ve learned with RSD or CRPS something goes haywire with the sympathetic nervous system after an injury & it just never shuts down the reverberating messages to the area, then you feel shocks, pain & coldness in the extremity!
Mine was pale bluish & cold. Again after the Sympathetic block, immediately my foot & ankle turned pink & warm and no pain! Temp went up 8 degrees immediately.
Good Luck.
There is Life after CRPS after you see ppl who truly know what it is & how to stop it -

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Replies to "Not all Mayo campuses are the same. Mayo in Rochester knows how to treat this! It’s..."

Can you share just exactly where the block was done? I've had CRPS of left ankle/foot (which has crept up the leg, making for constant burning nerve pain of the appendage) for about 2 1/2 yrs now... "officially" diagnosed by neurologist to whom I turned after doctors in another practice were clueless and useless. He referred me to PM doctor who wanted to inject into my lumbar spine, telling me that it would well stop the pain in the appendage especially in the traumatized and damaged ankle/foot. I said no thank you, returned to my neurologist who supported my decision. Found a highly recommended PM doctor not too far from us, and he fit no push got yhr spine ijrvyion, trdprvyinh my grit go vsudnih gutyhrt tolrmd in yhs strs z9dlipprf divd, odyrostyhtiyid, nrtbr iddurdz0. Ordered PT for the CRPS, stating that PT (effectively done) is the first line of treatment for CRPS. My super excellent podiatrist agreed. Underwne nearly 20 weeks of PT with a great therapist, and the pain in foot/ankle subsided from a constant 7 to 9 (out of 10) to a constant PL 6 --- so much more tolerable, but the leg up to above the knee is still symptomatic. I stopped PT. $40 weekly co-pays became a factor, and besides, couldn't just keep going for PT to avoid the higher pain levels....continued the stretching and foot exercises at home, but CRPS is NEVER going to just disappear. There definitely is no cure, as stated in medical journals and voiced by my neurologist, podiatrist, and PM doctor. Podiatrist put together a formula (for a pain cream) that was filled at a compounding pharmacy out of state. A bit expensive but SO WORTH IT. A metered pumpful rubbed and massaged around the entire ankle/foot does relieve the bite o the pain. I cannot take pain meds (high sensitive, reactive). Elevating the leg, applying heating pa, and an Aleve as needed all hel. I am quite aware of the burning nerve pain since it is 24/7...it is what it is, and I'm grateful for days when I manage an hour standing so I can do errands, etc., and bake/cook. I've gained a bit of weight since I am not as active/mobile as I was prior to the nasty fall that inflicted the damages to my left leg (torn meniscus and damaged tendons in my knee), my entire left arm and shoulder (but those have "healed" thanks to tons of PT and OT, as well as help from incredible orthopedist).
I'm happy for you that you were able to do the sympathetic block and that it was effective. I have found ways around life with CRPS. Not happy about it, but it beats just being resentful for how it has impacted my life. And yes, I have way too many other more serious medical issues that require my attention. What most affected me was being told by several medical professionals (who DID have knowledge about the condition) that there is no cure, and that indeed it could "creep" into other areas of may body --- and it has. But I have not allowed the condition to get in the way of living as best a life as possible, along with my supportive husband.