Any insight appreciated for a CRPS newbie
 

Hello everyone my name is Joe,
First of all thank you for your info Heidib I would have responded but couldn't figure out how,still figuring out how to navigate this site.
I fell and bruised my right hip and right arm on Dec. 3 and my right foot and lower leg swelled up several days later with no pain or change in color. Swelling went down about a week later. About 2 weeks after that both my hands began to tingle,then my right hand and my left pinkie and ring finger began to feel very hot at different times but not extreme pain. I went to a highly regarded hand surgeon/plastic surgeon that diagnosed me with CRPS on new years eve.
The pain and stiffness has slowly gotten worse,always at night and last night it started to go up my right arm and I felt it on the arch of my right foot.
I've started occupational therapy but what I would like is some input from members of this community of what I should expect as far as it spreading and its intensity. I know this disease is not an exact science and I am not holding anyone to their input I simply would like your honest opinions. Thank you soo much :)

Gentle pysical therapy at least 3 hours per week is essental. Never use ice. Get in a warm water pool if possible to keep moving in a safe way. Do not immobilize the affected limb. Check out the useful website section of this forum to learn as much as you can . Stop by here often, you will pick up great tips and friends who will listen. Best, Lottie

Thanks Lottie,that's great advice,I never thought of a warm pool and I was wondering about ice as well as wet heat therapy so I will stick with the warm heat, thanks :)

Joby,

Welcome to the forum. Sorry for the circumstances.

There is so much information on this forum. Take your time and search and peruse all of the threads and you will educate yourself from those of us that live with this condition every day.

There is hope. It's not all gloom and doom. You need to develop a daily routine and a team of professionals that understand CRPS and can help you along the way. I have my primary CRPS doctor who is a podiatrist as I have CRPS in my foot. Other team members include my general practitioner, my chiropractor, my physical therapist and my pain management doctors.

Make no mistake about it, this condition requires a multi-disciplinary approach for best results. Commit this sentence to your memory.

Yup, no ice. Never. I like warm water the absolute best. Your results may vary. Also never let anybody recommend nor should you try "contrast therapy" (hot cold). It is not a good thing for CRPS and can absolutely aggravate it. Some doctors and therapists that are old school think this is the way to go, but it is not.

I'm a big believer in taking vitamin C daily to prevent spread. I take 500 mg daily. You will find many references to vitamin C here. You have nothing to lose; it is inexpensive and your body excretes what you can't use. I don't think you need megadoses, but a reasonable dosage seems to make good sense.

You are your best advocate. Educate yourself and do not be afraid to assert yourself. This arguably is one of the most misunderstood conditions of the human body, even among professionals. As you develop your team, ask them point blank how much experience they have with CRPS and how many people they have treated. You want professionals with experience; not old school doctors with outdated opinions. If you see any "doe in the headlights" looks or responses to this condition, thank them for their time and move on. It's imperative you have educated and experienced people on your team. Don't just accept the first specialist/therapist/etc. that you see.

I spend approximately 3 hours per day on my routine which includes warm water soaks, physical therapy taught to me by my therapist, stretches, yoga, meditation (very helpful for chronic pain), and light exercise. My mantra is to "use but do not over-use". It's very important to keep moving!

Here is a link to a site that has information about "complementary" practices that can be very helpful with CRPS. Don't be afraid to experiment. You need to find the right combination of medications (what are you taking?) and western medicine along with some other practices that might complement other things you are doing. Scroll down until you see HEALING PRACTICES A-Z. Explore them and don't be afraid to try them. With CRPS, you gotta think out of the box!

http://www.takingcharge.csh.umn.edu/

Good luck to you!

Birch,
I received a bad concussion on Jan 2nd 2012 at work and have been out ever since. My neurologist is treating me for chronic migraines and memory issues. He has me on

125 mg Topiramate each twice a day

600 mg Gabapentin each morning
600 mg Gabapentin at mid day
1200 mg Gabapentin at bed time

95 mg Amatriptylin at bed time

He raised the Gabapentin after my CRPS symptoms arose.

I had a cervical spine MRI on friday so I will find out this week the results.He wants to rule out my symptoms being caused by that.

Since my symptoms in my hands only started a few weeks ago and now it's going up my right arm and I'm feeling it in the arch of my right foot I'm worried that it is spreading rapidly.The pain is mild and no skin color changes but I'm wondering if it will affect my walking soon??

Thank you so much for your input Birchlake :)

Hot water soaks with good old fashion epsom salt. Not scented just regular old every day stuff. It helps some with the swelling and stiffness. Try your hardest to keep moving the affected areas no matter how much it hurts. The old adage of use it or lose it is real for us. I have it in my left leg. It hurts to walk at times. Keep as positive as possible. Depression makes it worse also. When you hurt you get depressed, which makes you hurt more. They feed off each other. I take a lot higher dose of Vitamin C right now because I had a C Section almost a month ago and I don't want this disorder to spread to the incision site. Also remember everyone's CRPS is different. Mine doesn't act or look the same as yours does. Educate yourself as much as possible so you know what the new treatments are and if they might help you. Don't trust the Dr's to be educated in this disorder even if they are a PM Dr. The first PM Dr I went to only treated with injections not meds also. The one I have now treats with both. Also if they push for surgery not just a sympathetic block find a newmdr. Make sure all of your Dr's coordinate with each other. That way you get the best treatment for both of your conditions, the migraines and your CRPS. Good luck and I am praying for you. Since it was caught early you have a higher chance of going into remission. :grouphug:

Thank you so much Allanira,going to try the epsom salt today!

One thing I forgot to mention about my situation. After my fall, when my foot and lower leg swelled up so did the area around my right eye lids,it looked almost like an allergic reaction but no pain or change in color,just like my leg. Does this mean it's possible that I might get CRPS on my face and if so,could it affect my vision? After a year of migraines and memory issues from my concussion and now this CRPS which seems to be spreading rapidly,it's just a lot to process.