This is my first post here. I was diagnosed with CRPS by a podiatrist in April, but because a radiologist insisted my glowing ankle and foot bones in a bone scan were not consistent with CRPS I have had no treatment, only tests. In the meantime another doctor looked at my X-rays and my bright red leg and determined that I have CRPS.

Right now on a supposedly warm June day I am sitting under a heated blanket with a soft heating pad under my foot, because my leg and foot is so cold. When this first started after a minor crush accident to both feet I could not bear the weight of blankets on my legs and my feet. I still use a small stool to keep the covers lifted.

Since March I have to use crutches to walk, because I cannot weight bear on my right foot and ankle. I bought a device called InMotion so I can peddle while I sit. I am also looking at something called a WonderCore Smart to use as well.

My DEXA indicates that I have osteoporosis in my hip and spine.

When I asked my PCP about treatment he said my rheumatologist would treat me. The Rheumatologist told me the PCP would treat me. The ankle surgeon told me to go to the pain clinic and Pt. now the PCP is sending me to an endocrinologist. I did go to PT before, but I felt it was of minor benefit, because I seemed to get a bit better better, then get worse. The pain was excrutiating.

Since this nightmare began in July 2014 I have had the sum total of 60 pain pills. They worked, but I hated taking them, not because of the opioid, but because of the NSAID. I think no one believed me when I begged for pain relief, because every medical professional referred me to another medical professional, as if I was a junkie. The ER experiences were sad. If I told the whole tale of woe, you might not believe it.

The delay of diagnosis imo has increased my suffering exponentially. And the first doctor I saw did not even write down that I had pain in my feet he determined that I had hip bursitis and sent me hobbling on my way.

I ordered LDN and I am going to get medical Marijauna. At this point I cannot see any downside to treating myself.

I live in Boston and it seems as if no one at my acclaimed hospital knows what to do for me. My PCP told me yesterday I know more about CRPS than he does. This made me really sad.

I am terrified to have a mammogram, a colonoscopy/endoscopy and brain aneurysm surgery for fear that CRPS will spread. One nurse, snickered when she stuck a mega port in my arm. It was left in for 9 hours and not used, despite me begging for someone to remove it. I have lost all trust and I am afraid to put myself in the hands of people who know nothing about CRPS.

Thank you for letting me spew.

Welcome BioBased.

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

Welcome to the family BioBased.

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.

Hey Bio,
I want to let you know you're not alone with that. My wife has a pic of me sitting outside on a day of 91 deg wrapped in a winter coat shivering from being so cold. I even find comfort sitting for hours in my neighbors sweat lodge that he built.
This year my battle seems to be heat flashes were my body will just heat up inside and my physical control gets really bad. Although I feel really hot and sweating like a pig my original CRPS area is cold to the touch and I get so tired.
This monster sucks!!!
Be well..

Pain will wear you right out! Having everyday tasks take five times the effort will wear you out! You are using muscles you didn't know you had to compensate. Sometimes it is just so ridiculous as to be comical; wearing pant seats out, hoisting onto bathroom fixtures. When I was wiped out from dragging, hoisting, crutching, was when the pool became my favorite place. All that pesky gravity melted away.

It does get better but It takes time. Hang in there and forgive yourself for the things you can't do right now. Recovery comes in stages. I hit two miles today for the first time! I am kind of in shock that I did it. That is a record. It took a year that started with a few steps, then a walk down the driveway, to the mailbox, etc. That first mile came super slow, but it came.

Keep up the good work! Because yes, under these circumstances taking a shower is work!

Russell,

It cracked me up on Friday that the endocrinologist I saw did not notice that I was inappropriately dressed for the season, wearing a long sleeved, winter fleece jacket when everyone else was in summer clothes.

Wouldn't it be great to have a personal, climate controlled space surrounding you?