CRPS? PLZ READ, COMMENT

I'll start with The Present. I am 69 yrs old, male, 5 ft 9 in, 120 lbs (down from 155). I have CRPS, primarily in my knees and feet, although it is wanting to spread around to adjacent areas. I have had it about 7 yrs.
I am in bed about 20 hrs per day. Pain in my legs all day, everyday, varying in intensity, although it is severe. Also digestive issues, insomnia, and a raging anxiety disorder. I am on Dilauded, Baclofen, and a host of anti-anxiety meds. Also laxatives, anti spasmodics, and a host of supplements. Oh yeah, also a pain pump with both Dilauded and Baclofen.
I can get around with a walker as far as the TV room, front porch and bathroom. I can shower, shave, brush my teeth and the like. Most other activities I cannot do. This includes most of daily living activities--I cannot sit with my legs down for more than, say, 20 minutes, hence cannot drive or even sit in a car for more than, well, about 20 minutes.
The Past, or Why me? I had knee replacement surgeries. Never really recovered, slowly fell into CRPS over the years. Why me? I believe a variety of "perfect storm" factors contributed to my current state. My wife was diagnosed with an aggressive cancer a couple of years before my surgeries. (She defied the doctors and lived!)
So I was on the lookout for lurking danger. I had a childhood of benign neglect. The surgeon was a real cowboy, churning out new knees by the score. My pain control was poorly managed. I woke up during surgery (still remember the pounding of the mallet...). The combination of factors led my brain to be on constant guard for danger, and by golly if someone sawing your leg bones isn't danger......
The future: I have a background and interest in mind-body connections. I studied Sarno long before my surgeries. I worked at a yoga studio, had numerous acupuncture sessions, am generally well versed in these areas. I am working with a therapist on hypnosis. I have a fistful of doctors doing their best (?) to apply their specialities to my case. I have a wonderful salt water heated therapy pool I use at least several times a week. And I now have this forum and a couple of websites inhabited by like minded individuals willing to help.
Please comment, ask questions, or offer advice. I will do the same.....

 

Two of the members of this forum have defeated CPRS, they have a website, linked below. It's informative and gives explicit directions of the things you need to challenge within yourself to heal.
@TG957 (one of the women who runs that website) has also written a book about her own healing journey. It's very small, but totally personal and has been the thing that has resonated the most with my own healing journey.
The book is mentioned and linked in the website. https://defeatcrps.com/ (Complex Regional Pain Syndrome : Your Path To Healing) I find the website incredibly uplifting and motivating.

Best wishes,

 

Hi @Rabbit22 ,

So sorry to hear about your troubles. I can assure you, you're in the right place now! As @Cactusflower wrote, you can find a lot of info. on Tamara's site, where I contribute blogs. My symptoms were in my feet and knees as well, and we have both recovered (and so have many others!). Hope you find it helpful! :]

 

Sorry to hear that you are in so much pain. The advice given here by other members is excellent so Ill just add a few points.

@TG957 Tamara Gurin's book is a must read & at $3 Kindle price on Amazon it's a must have.

https://www.amazon.com/stores/Tamara-Gurin/author/B083V4M9JT?ref=dbs_a_mng_rwt_scns_share&isDramIntegrated=true&shoppingPortalEnabled=true (Tamara Gurin: books, biography, latest update)

Dr Sarno & Howard Schubiner have both confirmed that pain from TMS can be cured even after surgery or multiple surgeries, the premise being that your body WILL almost always heal. In fact Dr. Howard says that if TMS was the problem in the first place, then no amount of surgery will alleviate the pain & in fact the brain will use the surgery to further complicate matters. So take heart knowing that healing is possible.

The incidents from your childhood & the the more recent one of waking up during surgery will also need to be addressed.

All the best

Mala

 

Dear Cactusflower, miffybunny, and Mala,
Thank you for your responses and your guidance. I got a little turned around following links and ended up on a couple of different websites. Now I think I am on the right track. I plan to use defeatcrps site, this TMS forum, and Tamara's book as my references for information, activities, and the like. Right now I'm still orienting to these resources, meeting (Skype) weekly with my therapist and continuing my conventional treatments. I am taking a "go slow" approach, spending maybe an hour or so daily with my studying new information and incorporating new approaches.
Looking forward to joining the ranks of the recovered!
Rabbit22

 

Much like you, I had practiced yoga for years and tried acupuncture and hypnosis. Since you are going to get my book, I will not retell my story in this post. The bottom line is that you can hire many therapists of many therapeutic persuasions, but there is only one ultimate healer - and that is you. You'd better start doing what is recommended on this forum by the esteemed Beloved Grand Eagles who earned their titles for a reason. Pain Recovery Program from Alan is a great start. @miffybunny offers coaching specifically targeting CRPS cases, but at the end of the day CRPS is just another (albeit a severe) case of TMS.

Good luck, and we are looking forward to adding one more CRPS success story to this forum and to our defeatcrps.com website!

 

Thank you for your welcoming words. Right now I am concentrating my efforts on Alan' s Pain Recovery Program and also your book. I have learned not to get too high or too low with potential improvement avenues, as some have begun quite promising only to have improvements fade. That said, I am eager to get started and have committed a time period each day to these studies.