Hi everyone,

Thank you for taking the time to read my post. My name is Crystal. I'll be 33 on the 30th of this month (March).


I'm a fun, outgoing girl, that is always on the run. Between snowboarding in the winter, and camping with my husband in the summer, which typically includes our dirt bikes and/or mountain bikes, we hardly find ourselves at home. Every chance we get, we are out exploring.

It was just a few days ago that I was diagnosed with CRPS, following bunion surgery on my left foot. Being a tomboy at heart, over the years, I have had my fair share of pain. However, the pain I have dealt previously, comes nowhere near the degree of pain with this disease. It's been just over 2 weeks of bed rest, between that and managing pain, it is really testing my sanity.

I still don't know much about this disease and was hoping to meet new people, that have an understanding of the debilitating symptoms and mental struggles that you go through.

Thank you for reading, I look forward to meeting everyone!!! 😁

Attached Thumbnails

 

Hello and Welcome,

I am sorry to hear of your diagnosis but you have landed in a soft place. If you want, post on the RSD/CRPS subforum as well so the most members there will be able to respond to you.

Being diagnosed with CRPS is frightening and there is a lot of doomsday information out there. But there are many reasons for hope. According to Cleveland Clinic's CRPS specialist Dr. Michael Stanton-Hicks 80% of CRPS patients improve over time. It can take longer than you want and recovery seems to often be gradual but improvement DOES come.

There are many options for treatment. You may have to try several things before you find something that works for you. Try not to get discouraged during this process, it is common. Start with the least invasive options, there is good evidence for oral steroids (prednisone 10mg 3x daily for 10 days or more) in early cases. Many have pain relief with gabapentin or nortriptyline. Opioids can actually cause some hypersensitivity and are best for short term use. There are alternatives like Tramadol that block NMDA receptors which are implicated in CRPS pain. There is also neridronate in US clinical safety trials now which has shown good results in early cases. It is now a standard treatment in Europe. Having a good pain management doctor or other specialist familiar with CRPS to help with you with options will make a difference.

Activity is imperative. My pain management doctor has repeatedly stated the best thing for CRPS is using the limb (within the confines of your surgical aftercare plan). Find the balance between pushing activity and causing flare. You want your nerves to calm down but also remember what it is to do normal nerve things. One of the best treatments is physical therapy. Some of us started in the pool. Aquatherapy has the benefit of addressing circulation problems and reducing weightbearing. Talk with your doctor about PT and any home exercise to keep that foot moving, toe curls, ankle circles, etc. Massaging the foot as you can to reduce sensitivity is good too. Bedrest over an extended period after surgery can confuse your autonomic system. My peripheral nerve specialist told me that in some people it can take several months for the autonomics to adjust after lower limb surgeries. His advice was for me to start with trying to keep my foot down for 5 minutes at a time. That was about all I could tolerate initially!

Be careful where you get your info. A reliable source is RSDSA: Helping Those Affected by CRPS/RSD For More than 3 Years. Here are a couple of videos from them with a lot of very helpful information. Dr. Pradeep Chopra has a newer video than the one I'm attaching but I haven't seen it yet. He gives good treatment info and advises the importance of ruling out mimicking conditions and treating any contributing cause. He and Dr. Sean Mackey of Stanford are both highly regarded specialists. Mackey is a great presenter and is in the "What's New" video.

CRPSiagnosis & Management - YouTube

Treatment and Research: What's New? - YouTube

Take good care of yourself. Be kind to your foot. Eat well, try to reduce your stress, don't panic. Use your competitive nature and love of challenge to get through this. Remember that forums can sometimes be skewed to the worst cases. There are also stories of hope. I had 3 foot and ankle surgeries and spent 9 months on crutches before I got here in late 2014. I had a foot that could not tolerate being down, was discolored and miserable with pain. Yesterday, I ran two miles. I do still have issues and receive quarterly infusions of low dose ketamine, but I have made substantial gains. I'm hoping that you will too.

May relief and healing find you soon,