Just diagnosed & overwhelmed
 

Hi everyone,

I have just been diagnosed with CRPS after I tore ligaments in my foot. I have a cast for another month but should be seeing a neuro soon (my orthopaedic surgeon knows about this as well).
I also have trigeminal neuralgia/epilepsy as a result of a head injury in a car accident.

I have been on here for PCS, and now I find out about this. I am scared, overwhelmed, in pain, and not sure what to do. I have ordered many anti inflammatory supplements and am changing my diet (I eat healthy anyways). For now I have doubled my gabapentin and I can still feel all the pain in my foot.

It's just so much. I think I am struggling with all of these situations and can't quite process why this has happened.

I will keep reading the notes and links on here, I think that I just needed to reach out.

Joanne

Hi Joanne,

I am sorry you had to come join us. We all know how terribly scary it is in the beginning and how powerless it feels. But there is hope. Cleveland Clinic's CRPS bigwig Dr. Michael Stanton-Hicks says 80% of people improve over time.

Supplements, antioxidants, and stress reduction all help. Try to control anxiety. You want your nervous system calm all the way around. Keep pain under control instead of trying to push too hard through it. You don't want to get entrenched in those pain pathways.

Until you get out of your cast (which will help a LOT) wiggle your toes, do bicycles, anything you can to keep blood moving. Avoid alcohol and caffeine. Elevate as needed. Once out of there, start PT and get in a pool if you can for graduated increase in activity. Gentle exercise that doesn't cause flaring is key.

You may benefit from a short round of oral steroids. They are considered a frontline treatment in early disease at a dose of 10mg three times a day for 10 to 21 days. (taper if needed) If you have no contraindications to them ask your doctor. They are listed under the Dutch protocols and also Dr. Stanton-Hick's protocol if you need a reference. Some people do well on an alpha-blocker like clonidine. There are treatment options even when you can't exercise the limb.

There is a lot of great info here from a non-doomsday, caring and respected CRPS doctor. Dr. Pradeep Chopra "CRPS Diagnosis and Management"
http://www.youtube.com/watch?v=s3LKhOZ8mAM

I am glad you were diagnosed so early. That is great for your prognosis. Remember that progress can be slow with this but gains will come. If you are not making progress once you're out of your cast and start PT, consider follow-up imaging to make sure everything healed up okay. Let us know how you are doing and get better soon!

Sending hugs and healing love, :hug:

Littlepaw told you about Pradeep Chopra! Please watch the video with pen in hand to take notes. His number one recommendation is Low Dose Naltrexone.

Do you have swelling?

Can you take Valium? I ask because just a few months before I developed CRPS I stopped taking low dose Valium daily for Meniere's Disease. I suspect that the tiny dose was just enough to keep my anxiety in check.

Hello and welcome Joanne,
It's no wonder that you are feeling overwhelmed and having difficulty processing everything. It sounds like a lot has happened to you. It takes time.
In addition to the video suggested by Little Paw and Bio (I agree Bio I have notes too), one of the most helpful threads for me on this board was "lifesavers." So many good suggestions and all the way through it I kept thinking that I had found people who understand. I felt less alone. That's one of the best things about this community is the feeling that others get it. I'm glad you have reached out. Take care, mama mac

It has been a little while since I made a post on here, but I always like to try to say hi and welcome new members. You have found a great community here that really does a wonderful job of reaching out to others in need and sharing there thoughts, ideas, opinions and how they are responding to their treatments.

It's good to see that you are doing everything you can to eat healthy. I personally think that that is one of the best things that we can all do to not only help ourselves, but keep the inflammation and pain that goes along with CRPS to its minimum. As the others have already said, Dr. Chopra's video is well worth watching. Take some time to watch it if you get a chance.

Hope you have a joyful holiday season!