The Past, Present, Future

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.....

 

Hi Rabbit,

Wow, you've been through a lot! I'm really sorry to hear about your pain and all the tough stuff you're dealing with.

CRPS sounds super hard to live with. Being in bed for 20 hours a day and having trouble with basic things must be really frustrating. It's cool that you can still shower and get to the TV room with your walker though!

I think it's interesting how you connect your CRPS to what was happening in your life - like your wife's cancer (I'm glad she's okay now!) and waking up during surgery (that sounds scary!). Our brains and bodies are connected in weird ways.

It's awesome that you know about mind-body stuff already! Using the heated pool sounds really nice. And having doctors and a therapist helping you is great too.

Have you tried any of the TMS (Tension Myositis Syndrome) approaches specifically for CRPS? Some people with chronic pain find that understanding how the brain processes pain can help a lot.

Also, what kind of things make you feel a little better on your good days? Sometimes finding those small moments of less pain can give us clues about what might help more.

I hope you keep connecting with people who understand what you're going through. Having support makes such a big difference when dealing with tough stuff like this.