I was diagnosed with CRPS 3yrs after a car accident which I'm left with no bend or extension of my left knee. I have an implant holding my meniscus together, I've had manual manipulate under anesthesia, 4 stints of physical therapy, & injections in my knee & have done EVERYTHING else my doc's have requested me to do & after each procedure I've gotten worse. I was referred to a pain management doc to try & control my pain (hahaha) I was finally diagnosed in 2014 with CRPS & then a few months later I was then diagnosed with rheumatoid arthritis. I've gone from very athletic/working out everyday to struggling to get out of bed, feed myself & even take a shower. I'm trapped in hell & it's called my body!! No one in my family has either illness let alone understands what I'm going through every day. I'm unable to work, don't have insurance & with all the new DEA regulations all my treatment is very limited. Especially when my meds where cut down to be in the category of everyone else, I'm not everyone else & my genes over metabolize ALL pain meds & I need 3-4 times the amount as a "normal" person to receive the same relief as said person (I have documentation IDGENETIX- PHARMAGENETIC TEST RESULTS) both my RA & CRPS have spread throughout my whole body, I've been denied my disability but trying to appeal the decision currently. My life is already shortened a shit ton (10-15yrs!! I'm 34) because of my RA & who knows how much more the CRPS knocks off.. I have depression, anxiety, insomnia. & yes, I am a bit darker these days, because the thing that sucks the most is my kids have to watch me suffer & I can't walk from one side of my house to the other with out getting exhausted let alone do any strenuous activitys with my son's. WHAT KIND OF LIFE IS THAT?? So much more I could say but it falls on deaf ears, so few believe CRPS is real & let alone how to treat it.. Sorry rant over!!
@@rileykinn3872 I definitely know the feeling of being alone & struggling daily. I'm glad that I could be if help & let you know you're not alone in this war. We all may not be together fighting this illness side by side, but we all are fighting for our lives!! You're not alone & I'm here to talk if you need it!!
We the ones that share your illness do understand🙏 and agree with your feeling of disspare and disfunction of our once almost perfect body😢😰😫 I know I missed mine!! We're to find quality of life after this?? God have mercy 🙏
A 10 year sufferer similar nightmare my story includes car accident left arm complete degloved to bone of left arm 22 surgeries to save followed by more CRPS 2 and 1 has gotten worse, have had 6 surgeries for stimulators 226 injections and it gets worse I've been brutalized medical $1.5 million $150 .000 out of pocket My story is complicated i left hospital pain clinic after 10 yrs because they were making it worse I stepped into thi]e fire . I'm in Minnesota a place you dont want this disease. Mayo was a joke . i need legal and medical help Im a disabled Vietnam vet but VA is a joke I called for APPOINTMENT HUH sO IF YOU WANT YTO SHARE I WILL russ@esp1000.com m# 612-290-7248. The stats he stats are wrong I would love to explain . Im more empathetic towards others so hes wrong
I took a fall in November 2017 and completely shattered my left wrist and hand. I had surgery with plate and screws put in shortly after the fall. Had my cast off at the end of December 2017 and told my orthopedic surgeon that my wrist hurts worse than it did when I broke it. He put a brace on, filled my pain meds for the last time and sent me on my way. In February 2018, my hand began to feel like it was on fire constantly and it was sweating and my fingers were blue with my veins popping up. I’ve had three sets of hardware put in my body so I know what the healing process is and normal healing feels like, this was beyond any pain I’ve ever experienced. In March 2018 I went back to the ortho surgeon who did the surgery and explained what I was feeling and how bad the pain is. He said that I might have dupuytren’s because I’m of European decent (I’m not of European decent). That’s when I knew I needed another option. I went to one of the best orthopedic surgeons in Seattle and he diagnosed me with CRPS-RSD within two minutes of examining me and looking at my hand. He also told me that my wrist had not healed properly after surgery and my plate and screws were put in incorrectly and the bones have not healed together. Talk about a perfect storm of the most debilitating pain I’ve ever had and no one believing me until now. I cried when he diagnosed me and I’m so thankful I was diagnosed early. In April of 2018 I had a Sympathetic nerve block which worked amazing until about a month ago (hopefully getting another in July 2019). Mentally, my brain went to some dark places I’ve never experienced in my 58 years. I was mad, frustrated, hurt, abandoned, treated less than by asking for pain relief. This takes a huge toll on you physically as well. I’ve lost 19 pounds in a little over a year, I was so nauseated with pain I couldn’t eat or be active like I used to. Ive done a lot of research since my diagnosis and I changed my diet to include probiotics, cut back dairy and no red meat, I meditate and walk everyday. I make myself get active and I believe it helps. Best of luck to everyone battling this disease.
Stacey, please research LDN, it's a compounded glia modulator which is inexpensive and has a low side effect profile. If interested, I can send info to your email.
I suffered from PTSD after losing four close family members in 7 months, including two sisters that started a year before I was diagnosed with CRPS. I always felt there was a connection between PTSD and CRPS.
Psych, PT, OT is all good, but imho DECENT madication for chronic pain is crucial. You can’t meditate pain away. I wish every dr. should try to work for 24 hours with a pain level of 7-9 once in their education!
I need this. I have CRPS and I'm desperate. I've lost my life, and my health, and especially mental health has declined unacceptably thanks to the lack of care and understanding with local docs. A lot of them don't even know what this is.
If it is in a limb there is an 80% success rate with surgery. Read the study that was done by Dr. Lee Dellon of Johns Hopkins. It is basically an injured peripheral nerve and there is a simple surgical solution. There is no risk of making it worse. You need a chronic pain focused peripheral nerve surgeon to do it. See my story on RU-vid: CRPS pain gone after 27 years. To read the study googlle Dr. Dellon surgical treatment of CRPS. I am.happy to answer your questions here or DM me.
I'm my case with CRPS I actually had a diagnosis of Asperger's at age 13, bipolar disorder type 3 at 14, CRPS at 19, then at 21 was diagnosed malignant hypertension and chronic tachycardia, CIDP (chronic inflammatory demyalating polyneuropathy) at 28 and finally at 30 diagnosed with Sjogren's syndrome.
