CRPS - anyone suffering with complex regional pain syndrome

I'm sorry you are going through this. My daughter was diagnosed with CRPS in October 2019, she is 10. I've been corresponding with parents for several months on a Facebook Support page for parents and collected helpful information. It is very slow & painful progress as it is like learning to walk again, but here is what I've found is the best treatment in my opinion. Remember you are building a new pathway to the brain in telling your brain that there is no longer an injury and you will use that foot / leg. As painful as it is you must move/ use your foot to build that pathway otherwise it will spread as the glia cells will look for new receptors. Use your foot!! The most successful treatment is too keep moving your foot. Frequent physical therapy and occupational therapy, desensitization to the effected area. Meaning, touch with a feather, then cotton swab, eventually tissue, towel, baby brush, etc. Daily for 3 minutes, every 2-3 hours. Soak your feet in warm water. Move your foot in a tub of rice or dry beans. Sit on a yoga ball and put feet flat on padded surface or pile of blankets. Move back and forth. Swimming in heated pool. Don't give up! Small progress is better than none. We went from crutches, one crutch, to no crutches, walking on tip toe. It was hard and It still hurts her like crazy but she's are working on it. The programs that are recommended for her are pediatric intensive pain rehab programs either outpatient or inpatient/ 4-6 weeks, 9-5p where patients learn to mentally cope and move through pain, making that new pathway. Patients can go in remission!! There are programs for adults too. I would do as much as you can yourself, put yourself on a schedule to be as proactive as possible while getting more information and how to move forward.

Hello all, I'm 35 years old and was just diagnosed with Chronic Regional Pain Syndrome after about a year and a half with going to specialist and no one knowing anything. Then I go to another doctor who at the first visit diagnosed me with it. It's in my right arm ( which I'm right handed ). They say it normally happens from a previous injury but I can't think of anything that would have injured my arm. She has me on Lyrica 150mg three times a day. At first it was doing really good dealing with the pain now it seems like it's come back 10 times plus. My GP wants to increase the amount I am taking up to 200mg 4 times a day... I know a few of you have stated different things working for you but I'm wondering is there something else I can take that will take the pain away completely without having to take pills all day every day???

I have CRPS of my left arm. Occurred after a fall, then rotator cuff surgery.. I was taking Gabapentin and currently switching over to Lyrica. My fall was over two years ago, so this has been going on a long time. Everyone is different, so treatment is so individualized. What level of pain do you have? Once I got up to 3600mg a day of Gabapentin, my pain level went from a 7 to a 6. I started PT again with the lower pain level, and it went back to a 7. I have had many side effects from Gabapentin, so hoping Lyrica has less. You are the first person that I have conversed with that has CRPS in an arm. Most seem to have it in their legs/feet. My pain specialist suggested a Spinal Cord Stimulator for me. However after doing a lot of research on the success for CRPS of the arm, very little positive data could be found. I also am a breast cancer survivor and with the Spinal Cord Stimulator, you can’t have MRIs of your torso. I empathize with you and would like to see how your journey progresses. Best of luck and stay in touch if you like.

I have crops in one foot the pain is unbearable

CRPS sorry

Have had it for 6 months what meds work

Yes going on 3years

I have a recent issue of extreme burning full body itch excruciating!

Hi @missbiss, welcome to Mayo Clinic Connect. Here's you'll meet other members dealing with CRPS like @gracie2018 @dmac5 @madhouse30 @mlross4508 @janetdh @menville and others.

Missbiss, May I ask what led to your having CRPS? What it an injury, stroke, other? Full body itching must be excruciating. What have you tried anything to help relieve the itching?

I suffered a Liz fracture of my right foot almost 3 years ago it has spread up to my knee and leg also affects my left foot now this full body burning I have is god awful I have been taking benedryl for 2 weeks now with only slight relief