CRPS - anyone suffering with complex regional pain syndrome
I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body - her nerves are on fire... it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense... we keep searching for help and guidance... since many do not understand this horrible affliction.... thanks for any advice....
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This was done at the height of the Covid panic and is allowed during severe snowstorms or if my flares are out of control. But they expect me to show up if I am to receive my prescriptions.
@faithwalker007 Maybe it's time to consider finding a more responsive doctor.
I cannot take offense at a helping hand, Lori Renee1.
I do quite a bit to distract myself from the pain actually and attempt to learn more and more as is possible even with the cognitive blur the pain causes. I have learned to paint, polish rocks, diamond paint, sketch with charcoal, and make soy candles. I even continue to try to write although I’m limited to blogs and brainstorming with future plots and novels. I haven’t finished out published another novel since before my knee operation. I may need to be contented with five. That’s okay.
I haven’t taken Kratom but with my seizures and migraines, that’s a discussion better left between my neurologist and me. I’ll let you know what we decide. I need a list of the entire ingredients, inactive and active before we even discuss it as a treatment option.
And neoplasticism? I don’t know much about the topic but I will investigate it further.
On the subject of closer providers teams? I’ve been attempting to get a closer provider to accept me and my case for over a year. I visited with my husband’s provider last month and due to his upcoming retirement, he declined. All other pain specialists with an hour drive, refuse to prescribe opioids or accept me case due to the opioids I currently take. I’ve been told by two “providers” that CRPS WILL NOT respond to Opioid therapy, (with me, a verifiable example of the opposite sitting in front of them) and the only treatment I could receive would be a SCS (which I already have), Lyrica or another “nerve” medication (anti-epileptic), or NSAID (can’t tolerate due to surgical and medical history).
Upon hearing the previous reasons to not be a recipient for their new protocol treatments, they excuse me from their offices with a polite or forceful no and say goodbye .
Believe me, I’m trying. No one will take my case.
Which type of CRPS do you have?
i have CRPS type 2 - triggered from a broken leg. i was unable to walk, couldn’t wear pants or have anything touch my leg, couldn’t tolerate noise or vibrations ie: car ride. It spread to my other knee and both feet, but it’s not as severe there. I honestly am about 95% better now, been back at work for about 2 years - honestly never thought i would get to where i am now
Thank you.
Mine is type 2 as well. The surgeon severed my lumbarsacral plexus in my right hip when I was having my right TKR. The anesthesiologist couldn’t get spinal anesthesia to work so they finally gave up and switched to general and hurriedly completed the TKR in 45 minutes. My neurologist believes when they were positioning me, they pulled my leg beyond its yield point and the plexus was severed.
I have drop foot as well in the right foot.
I also have vivid nightmares of the surgery. The only surgery on the 25 I’ve had that I can dream about and remember details about.
Please help me how do I get the emails to stop it is way too much for me
@faith88 Go into your Account at Mayo connect click on it scroll down to notification hit edit