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

I have CRPS in my legs/feet. I'm strongly encouraging you to stop ALL refined sugar. I gave it up last December and now I can walk again, and I'm walking a lot! Keep moving. I'm completely amazed at the change! I now do 6000-12000 steps a day and it's incredible how easy it was to give up sugar once I realized it was like a "Poison" for my body. Drink water and follow a good diet, like the Mediterranean one. The biggest issue I currently face is the heat, so I stay inside and use a treadmill and a recumbent bike. I also have a Boston Scientific spinal cord implant, and I'm grateful for it. I've lost 34 pounds, and my cholesterol and triglycerides have reduced. It's a win-win! Wishing you the best!

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.

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...

Those steroid shots into the very vascular areas of the foot and ankle was the cause of the CRPs for me.
In fact the CRPS info stays that often is the root cause.
PS: I also had spinal surgery in the lumbar area years before so no I didn’t want any shots.
But I needed relief, so I could work again & enjoy my life.
I felt 0 pain from the CRPS TEST at Mayo and got up after & walked. No other specialist in my city knew what this was, or how to treat this.
The “TEST” is just to see if part of the central nervous system is maintaining & spreading the pain, that’s why it could be “moving”
That’s all.
If you get full relief, then they (Mayo) knows what to do to get you functioning again.
Theres all kinds of new treatments today, from a patch that dulls the pain to an implant.
You know what’s best for you but I’m just sharing how easy & painless that test was & how much relief I had. To me, I got my life back ….Good Luck ☘️

I too had a sympathetic nerve block which removed pain in leg for CRPS test. If you have an excellently skilled PM doc as I do you wouldn't fear his treatment. My problem is most of what is done is a Workers Comp case and getting approval keeps me in pain longer than I need to be!

Hi, and thank you for your insight . I have crps for about thirty years, and yes I have done it all but the pump. To know your not alone is a relief because I do feel alone at times(it's hard not to). Thank you and I will keep you in my prayers.

I am suffering with it as well after knee/femur replacement
My DO/Naturopath/homeopath dr recommended that I read "Stepping Out of the Box" book by Dr Traci Patterson
Extremely great detailed book about her journey
She is a Dr that traveled the world trying to get help with this syndrome . Nothing helped..Pharma, injections you name it.
She discusses many natural options accupuncture is the first and many more. She and many of her patients have have had results. It must be put into remission.
It is a brain /body syndrome. I am just at the beginning and accupuncture has helped so far but am now looking for a neuro psychologist. I notice that it fires up when i am stressed and fires up the neurons in my brain. It is very painful and after 6 months..yes it is spreading and frightening. I highly recommend reading this first to guide you to the answers. Most of her patients as well as her personally are in 7-10 years of remission. This is very painful and scary. Best of luck. She has many answers. Like i said, i am just beginning my journey and she clearly explains it ALL xo
Sincerely, Suzette

This syndrome rewires the neurons in the brain , and help IS possible.
Most physicians are pain management ones...I have tried them and it only made it worse

I've had CRPS Type 2 now for 8 years and some days it makes me wish that I was dead. I have no plans to hurt myself but the damage done both mentally and physically are so severe that the nickname for CRPS is "The Suicide Disease". I thank God that I have an excellent Psychiatrist and Psychologist LCSW that give me a "Check Up From the Neck Up" weekly. The Pain is unbelievable but the damage to the Central Nervous System is so complicated and severe that your Brain is damaged, Limbic System and Insular Cortex damaged, my Teeth all cracked and gone, Hearing and Vision damaged, memory getting worse, Personality and Social skills changed so much I don't know who I am anymore, Sex too painful to attempt, bodily Organs damaged, Enteric System damaged, Autonomic and Autoimmune Systems damaged and your Sympathetic and Parasympathetic Systems are damaged so badly that your body is put constant Fight or Flight Mode and also the smallest amount of stress sends the Fight or Flight Mode into Overdrive. My CRPS Type 2 began when surgeries to repair Progressive Nerve Damage To both feet and legs failed in 2016. My bilateral foot damage started in 1984 when I suffered Multiple Neuromas Bilaterally in my Metatarsals while working as a mail Carrier for the US Postal Service. But that is another nightmare I'll save for another day. God Bless All Pain Patients and don't give up as you will find there is much to be thankful for, and, at least my worst Flare-ups will eventually subside, although it might take hours or days.

I am just nine months into the CRPS thing
I have written this before on here the book that my Dr told me to get. The entire book is written by a Doctor Who had CRPS and travel the world to help herself and her patients with no avail. She returned home with answers.
This is a MUST read, not just hype..
"Stepping Outside the Box" by Dr Tracy Patterson
She has successfully helped her patience, go into remission and her 10 year struggle with CRPS as well. I am scheduling with a Neuro psychology physician.
And also acupuncture and more. It.IS possible to rewire the brain. And that's where it all begins as we all know. When she wrote this book, she was in 10 year remission and her patience are as well at least most of them.
This is such a brain/body syndrome that pain management does not address.
It begins with a neurons in our brains, not with the suppression of the pain.
My heart goes out to all that suffer from this, but I'm hoping to bring hope and help with a new avenue to really deep relief from the source..the brain
Best of luck to all 🍀