Hello Everyone,
This is my first post. The first real almost diagnosis of me having CRPS was just last Friday at a (new) rheumatoligist's. I am not even certain that I have it. But after reading some of these boards, and especially the "shocked" thread, it is just hitting me that others also have these odd compilations of symptoms. I'll give a brief background, but want to ask others this:do you experience episodes of flare ups and remissions? I feel a lot better today than I did three days ago. Some days, I am on my side in bed writhing in pain, and today, (with moderate pain) I went out to dinner with hubbie. Is this what you also experience?
For some background, I have been an avid mid-distance runner all my life. About three years ago, I had to stop running from the feet pain. Two years ago, I had to stop walking from the pain in my feet. I went to my PCP and started Vicodin. It helped, but I still could not go for an exercise walk. I was referred to a pain specialist and a rheumatologist. I have finally settled on a pain guy and just found a new rheumy who seems knowledgeable. Now, about two years later, after many bone scans, MRI's, x-Rays, and blood tests, my rheumy (who I just saw once and see again next Friday) has suggested I may have CRPS. I have a lot of bone issues that appear in the scans, but he seemed to think I have CRPS. It may have been because I asked him enthusiastically to be very careful when examining my feet. I was at about a 9 pain level when I hobbled into his office to see him because my pain medication was done working and i was late in taking my regular dose. He is running some blood tests for Lyme, Lupus, and other little delights, but he clearly thinks I have CRPS. He told me to sign up for Ketamine therapy asap and to look into Calmare. He said he had just seen a woman with my similar situation, but using a walker. He said she had the most substantial turn-around of her situation he had ever seen. He said last time he saw her, she was pain free and walking fine. At that point, I did not know what CRPS was. But since looking it up, I started to do as the doc suggested. I am signed up for the first available Ketonine therapy (May 2016) and had scheduled for the Rutherford NJ Calmare therapy place. But after getting my first in a three part series of neuroma injections into my feet Wednesday, I am scheduled to meet with my podiatrist to get these neuromas surgically removed - permanently. I have read that any gains in relief for CRPS can be set back from procedures, so I am re-scheduling my Calmare for after surgery.
Ok. So that's my story. Geeze, sounds like a book! Well, I will keep everyone posted on how things go with getting the nerves out of my feet removed. It's just a consult with the surgeon Monday. But if all is well, I am going to go for it. I'd rather be numb on my toes than feel like I am walking with knives through my feet. Numb sounds nice. Has anyone else had their foot nerves surgically removed?
Thank you for reading my story. I hope each of you reading this has a restful night, without pain, and wakes to a happy, pain-free morning.
: )
~ Morgan