Littlepaw,
Reading that you now walk a mile every day after so many surgeries gives me hope.
I am just so tired and warn out. It is difficult to explain to people that stepping on a tiny crumb not only feels like a huge nail, but it can throw my balance off to the point that I could topple. The name change from RSD to CRPS hasn't helped either. Everyone thinks a doctor must have given me some magic pain pill that will solve this, if only!
I want my husband to film me taking a shower ( in a bathing suit of course
) or transitioning from the stairs to the landing and then dragging myself into a room to use furniture to maneuver myself into a standing position. I could post it FB, but while it old be a good visual, it would never show what it takes out of me. I am tired of being tired.
Quote:
Originally Posted by Littlepaw
Welcome Biobased,
I am sorry you had to come and find us but you will find good support and companionship here. I think many of us have been through the wringer as far as getting a diagnosis. It is a common problem. Finding good care can be a challenge. The RSDS website lists some doctors and members of a local support group if there is one, may have suggestions. Some of us see neurologists, some see Physcial Medicine and Rehabilitation. Those specialties may have something to add in addition or in place of pain management. I asked about rheumatology myself and was told they didn't treat it at the practice I was interested in. Get the best care that you can, with someone who has treated this and understands it, even if you have to travel.
Dr. Pradeep Chopra has a great video "CRPS Diagnosis and Management" on YouTube. Sorry I can't post links today. It has loads of great, non-invasive info and is non-doomsday. Should come right up.
There is hope. 80% of people have improvement over time according to Dr. Stanton-Hickes at Cleveland Clinic. He is one of the big CRPS specialists. Taking good care of yourself, decreasing stress, managing and treating remaining pain contributors or injuries and consistent, gentle range of motion and exercise will bring good progress. Using the limb is vital for healing, circulation and maintaining strength. Get in the pool and swim, ride a stationary bike. Do yoga or Pilates. Do everything you can without causing pain flare. Pushing too hard can set you back. It takes patience and persistence but you WILL improve. I spent months on crutches, a walker and a cane after multiple foot surgeries. I now walk a mile and sometimes more every day. Come here when you need to ask questions, vent or get a virtual hug. You are not alone.
Sending Healing Love, Littlepaw  |