Please donate for my CRPS treatment at The Spero Clinic.

Hi, my name is Stephanie and I am battling a difficult disease called Complex Regional Pain Syndrome type 2 (CRPS). I was also diagnosed with erythromyelalgia. I was walking and fell on the sidewalk on April 5, 2024. I fractured both of my ankles. My left ankle was a fibula fracture and the right ankle was a trimalleolar fracture. This is the worst type of ankle fracture you can have. I had three breaks on that right side and some shattered bone also. I was told by my surgeon that this would be a long journey. I had surgery on each ankle and then again on the right that month. The first surgery they installed an external fixator. This was a very painful contraption to have to deal with that protruded to the outside of the leg. The other surgeries were open reduction internal fixation (ORIF). I was in 4 different areas in the hospital during my stay of one month. I was in bed for several weeks. They later told me to start putting weight on the left foot only for short periods. I was not cleared to use the restroom during that time because my dysautonomia was aggravated. This is a dysfunction of the autonomic nervous system. I had this diagnosis since I was 13 after being bit by a tick and acquiring Lyme disease. Overall, it was stable in the previous year but not after surgery. When I did try to sit on the side of the bed my blood pressure dropped low to 60/40 and was at times not even readable and my pulse was high. I came close to passing out repeatedly with weakness, nausea, sweating and trembling. They did not feel I was safe to go to the bathroom or anywhere. I tried getting up over and over day after day for physical therapy on the floor. Each time my blood pressure dropped I had to lie flat again. I was finally able to be up for short periods of time hopping on the left leg with the walker before I went home. I still wear a blood pressure cuff on my wrist in case it starts to drop.

My ankle surgeries were terribly painful. The last one I felt like a steamroller was going over my foot along with sparklers firing and a garden hose running. I am in still in physical therapy. I had an another follow up appointment in July. My surgeon said the amount of pain at that point was more than it should be. He looked at my foot and ankle and noted the discoloration (blues and reds). He said it looked like an autonomic problem that he could not help me with. He said he has not seen that. I was upset because I knew I needed to feel so much better and live my life fully. This is a separate problem from fracture healing but was aggravated by the fracture and surgery.

All throughout the day my feet get hot and swollen and then ice cold. This was primarily in my right foot and ankle but now has spread to my left foot and ankle since October. This spread can happen with CRPS and that is not a good thing.

I have a horrible strong burning sensation in both feet and ankles which occurs frequently. I also feel deep aching pain. I am walking short distances with my walker and I use a wheelchair. I feel like I cannot put full weight one my right foot because of the pain and weakness. I cannot tolerate to have my feet down in the wheelchair for more than 2 hours because the pain intensifies a great deal along with the swelling and discoloration. It is much worse at night.

When I saw my primary doctor he told me I have Complex Regional Pain Syndrome (CRPS). I had a triple phase bone scan done which confirmed this diagnosis. It is a terrible diagnosis. They call it the suicide disease. The pain can be very severe and unrelenting. It is chronic and can spread to the whole body, affect multiple organs and even get worse. That is why it is important to have an early diagnosis and effective treatment as soon as possible. The earlier this happens, the better the outcome can be. The current available treatment consists of nerve blocks, pain pumps, pain pills, spinal cord stimulators, ketamine, etc. However, these treatments just try control symptoms and are very risky. It is important to try to avoid invasive procedures if possible with CRPS. This is because it can aggravate the condition and make it much worse. I am also sensitive to many medications.

I researched treatment options extensively. I found that the Spero Clinic in Arkansas rehabilitates the whole central nervous system with several treatments. This approach differs from standard symptom relief. Patients come from several different states and countries for treatment. The Spero Clinic has treated many patients with CRPS, erythromyelalgia and dysautonomia (POTS). This holistic approach has really helped many patients. It also works to prevent relapse. I would like my autonomic system to be strong and have my blood pressure, heat intolerance and dizzy symptoms improve too. The testimonials of the patients at The Spero Clinic are amazing. Please visit their website at thesperoclinic.com to find out more about the treatment they give and how lives are improved. It is very hopeful to watch these stories of people who have a new lease on life. The staff really understand CRPS when many doctors have never heard of or seen a patient with this. I really want the pain, swelling and discoloration to be gone. I don’t want to be reminded of the intense pain every minute. I don’t want to worry about it spreading further into full body CRPS.

I want to live my life and go back to doing what I love to do. I want to help people again and keep sharing my testimony. I want to go on long walk my dogs and walk down my front steps without a ramp. I want to carry things while walking and balance. I want to keep my legs down without terrible pain, bike ride and most importantly dance again with my husband with a big smile on my face. This is what I love to do the most.

Would you please help me receive treatment at the Spero Clinic? I am trying to fundraise to be able to arrive at the clinic in late December or early January. This is coming up quickly. The goal is $60,000. Unfortunately, it is unknown if insurance will pay anything at all at this time. Routinely, insurances do not pay.

If insurance does pay anything it will be minimal in comparison to the cost. The raised funds would help cover treatment expenses, equipment, travel and lodging. The approximate stay is 14 weeks. I send a great big THANK YOU to each and every one of you. I thank God for you. This means so much to me and my family. God bless you!

“And the God of all grace, who called you to eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong firm and steadfast.” 1 Peter 5:10