Originally Posted by lisashea

Hi count your blessings,
I had to respond to you question about is it time to accept your diagnosis by sharing my story with you.

In 2001 I was diagnosed with rsd type 2 from an ankle sprain. I immediately started nerve blocks and did everything a good rsd patient should do. Every doctor I went to told me to stop searching for a cure and to accept my diagnosis. This was my reality and I needed to go to a pain couselor to help me learned to cope and deal with the fate that was handed to me.

I DID NOT listen to any of them and continued on my search for MY cure. I tried everything I could - HBOT, accupunture, herbology,cranial sacral, applied kiniseiology, my list goes on and on. I was determined to get help somewhere, somehow.

Finally, in 2004 I had to find yet another doctor because mine was no longer going to see patients. I had no idea who to see since I had seen all the rsd/pain doctors in the area so I asked my chiropractor who he would recommend. He told me he had a personal friend who was like a medical detective and that he trusted her. I waited anothe 4 months to get an appt with her and upon exam she said that she thought I didn't have rsd at all but nerves entrapped in my ankle.

I knew what nerves they were because I had told doctors for 4 yrs that my pain spread on the path of 2 nerves beginning at the tendon I tore and the 2 ligaments but none of them would pursue this theory of mine. She told me I was her 8 patient in her career that was misdiagnosed with RSD and really had nerve entrapment. Her plan was to proove this and get a surgeon to operate.

Before my next appt, I went back to my chiropractor and told him. He said if it was trapped nerves he could do some manipulations to the bones in my foot and maybe it would help.

He did that and within 10 days my pain(which had spread up my entire left side to my face, nose and ear and my other leg) was gone!!! Those 10 days were not pleasant - my leg was twitching and jerking and spasming but I awoke to a no pain.

Since then it took me almost 2 yrs of intense rehab but I am finally back to being totally normal. I lift weights and even run on a treadmill! I began working again full time in december.

So.....
My answer to your question is NEVER STOP SEARCHING FOR A CURE! If I had accepted my diagnosis of RSD and stopped trying where would I be now???

Certainly not where I am.

If I could find the miracle cure then why can't you?

Check out the the mensana clinic and dr nelson handler. He has written a book on rsd being misdiagnosed as nerve entrapment syndromes. He did a study where 71% of the patients diagnosed with RSD really had nerve entrapments.

Peace and hope to you,
Lisa

Originally Posted by countblessings

Hello All,

My physiatrist has been trying to convince me that I have RSD for almost a year...as short as I can make it: I had a cervical fusion done in 2000. Was fine, and then took a fall on the ice a few years after that, put out my hand to brace myself. I couldn't turn my head the next day. Over the past 2 years, I have had reoccuring "bouts", in the past several months it has been continuous. My symptoms in a nut shell are burning, stabbing pain over my scapula [the spasms in my trapezius muscle are horrendous!] Inflamation in my joints, shoulder and neck...pain radiates down my hand, my hand is blue [although with manipulation, I can get it "normal"] sometimes red and swollen...always colder than the other....sometimes, my dh will walk by me and try and touch my shoulder area and I jump.
I have had: shoulder arthrograms with MRI, cervical and upper thorasic MRI's as well...all normal. Have done PT [with little relief, seems that a day goes by and the muscles are back to knots] Massage Therapy...have been on a pain contract for Vicodin for over a year as well [am very good about keeping my dosages way down], have done trigger point injections... I go back to the doc's today, and I believe the next step is for nerve blocks-which I will do, because the pain is unbearable...also seems to be [newly] on my left side as well--a kind of mirror...but I feel the pain mostly in my scapular area [those trapezius muscles] when I try to turn my head...although for the past several days I don't even have to move to feel pain. Oh yeah, a few weeks ago I had a "flare up", and the doc put me on steroids, which did seem to help...for the short term.
So--after all my blathering, do you, who know this disorder far better than I, think it is time for me to "suck it up" and deal? Or should I be searching for other answers?

Thank you so much!
As my grandmother always said...Count your blessings!