Last March my daughter, Chelsi, was a healthy, normal full-time college student. Everything changed in an instant. One fall changed her life. This is her story.

On March 6, 2016 the doctor ordered routine yearly blood work and the results were troublesome with several of her numbers in the high range, including her calcium, protein, and liver. We weren’t sure why her numbers were high, but we made plans to have her retested.

On March 19th, while walking her dogs, Chelsi tripped in a hole, sprained her right ankle and landed in the gravel on her left knee. She’s always been clumsy and spends a lot of time on crutches, so her injury was sadly nothing new. 

Within a few weeks of what we thought was her recovery process, redness, swelling, and heat started in her right knee, the one she didn’t hurt. The symptoms started as a rash and moved down to her feet over a period of weeks. She couldn’t stand anything to touch it, other than ice, and she had to use her boot in bed because the blankets or pillows bothered her when they touched her foot. At this time, we used the RICE method on her. Rest, Ice, Compression (with Ace bandages and the boot), and Elevation. I ran back and forth to the freezer every hour for fresh ice. She iced her knee and ankle for 15 minutes every hour. We also kept an ice chest beside her bed at night so she could continue to ice throughout the night. The doctor gave her mild pain pills, but nothing helped with the pain and she quit sleeping. The only relief she got was from ice, so she quit taking the pills.

The doctor suggested that she try physical therapy. She went twice a week for five weeks, had multiple MRI’s, visited two orthopedic doctors and two general doctors. Nobody knew what was going on and the physical therapy only made her worse. One orthopedic doctor said that she was 80% healed and that she was fine. He was a real jerk. The other orthopedic doctor identified her symptoms as some sort of rash, and said it must be Lupus. All of those tests came back negative.

The physical therapist suggested that she try pool therapy since she couldn’t walk without her crutches and we still didn’t have a diagnosis. After one visit to the pool, a rash developed on top of her feet. We thought it was pool rash. Since the physical therapist didn’t know what else to do with her and her symptoms only intensified, she released Chelsi after five weeks of therapy. She was still unable to walk or bear any weight. The rash, redness, severe nerve pain, and heat continued to spread down her right leg and started to develop in her left leg as well. Within a few days of starting on her left leg, it went down both legs and to the bottom of her feet. 

Without any help or diagnosis, we decided to continue with the pool therapy on our own. We joined a gym that had handicap facilities in the shower and a handicap lift for the pool. She worked with a trainer for a few weeks and expanded upon what the physical therapist had done, but each time she put any strain on her body, she would only get worse.

I was concerned about DVT because she had not walked in several months, so I tortured her daily with compression hose. She cried as I put them on and took them off, but I wasn’t sure what else we could do.

In July a friend told me about her family member with a rare syndrome called Complex Regional Pain Syndrome or CRPS. It had formerly been known as RSD, Reflex Sympathetic Dystrophy Syndrome. After a quick Internet search, I found that the symptoms described with the syndrome matched Chelsi’s – the hot patches, severe pain, swelling, need for constant cold, and the aversion to the slightest touch on her legs and feet. I spoke with her doctor and he agreed, but wanted a rheumatologist to make the final diagnosis. Both doctors agreed, she had CRPS, an incurable syndrome that came with a truckload of bad news and gloomy outcomes.

To make matters worse, we discovered that icing her legs was detrimental to people who have CRPS. The ice freezes the protection around the nerves and actually causes the issue to spread. So the only thing that was helping her at the time was no longer an option. That’s when we switched to peppermint oil, castor oil, and cool wet cloths. I rub the oils on her legs at least once a day and sometimes add rosemary or lavender and she keeps a bowl of water near her bed to dip the cloths and keep them wet.

With no magic CRPS pill available, the doctors prescribed Gabapenten and an anti-inflammatory medicine, which didn’t help with the pain. Instead they made her sick. She threw up continuously one night and we thought we’d have to take her to the emergency room, but the vomiting finally stopped and she slowly weaned herself from the medication. During the two months of taking prescriptions we saw no improvement.

After a couple of months at the gym, the manager decided to move the shower chair, but it wasn’t properly installed. Chelsi sat down and the chair shifted slightly. I thought she was fine. I turned my back to get her shampoo that fell from the bench and it collapsed, throwing her onto the hard tile floor where she injured her tailbone and bruised her backside. Now it hurts for her to walk, lie down, and sit up straight. She takes all of her meals in bed on a tray, but she can’t sit up to eat them properly because her tailbone constantly hurts. CRPS spreads with injury and it quickly spread up to her tailbone.

With nothing but gloom and doom is Chelsi’s future, I reached out to the local CRPS group and spoke to the leader, a very nice, very informed woman who told me that Chelsi would need treatments such as ketamine infusions, spinal injections, and powerful pain medications. As someone who is essentially adverse to the thought of taking long term medications or doing harsh procedures, I believe I was in shock. Before we hung up the phone, she told me that CRPS is also known as the suicide disease. Let’s just say that I became a mom on a mission. I was going to prove everyone wrong, heal my daughter, and life would go back to normal. That was the plan.

I started my mission by searching for cutting edge treatments in the healing of CRPS. In late August I found a program which consisted of a dedicated team of scientists and a manual ligament therapist and they were doing a one week clinic in Tennessee and had one slot left. I signed Chelsi up and within a couple of days we were loaded and headed to Tennessee. There, we found hope. We found the answers for which we had been searching. We learned natural ways to deal with Chelsi’s pain and our fears. The manual ligament therapy helped to relieve her pain enough for her to walk without her crutches, but it didn’t relieve the symptoms, though they changed. The colors in her legs went back and forth from red to blue and they looked more uniform.

After we returned home, Chelsi continued to take a few steps, walking from her bedroom to her bathroom a few times per day and she remained dedicated to the stretches and other exercises that she learned in the program. We finally had hope that she could beat CRPS.

A few weeks later in October, after a campaign to get the program to come to our home state, the program director called and someone anonymously paid for Chelsi to have a second week of treatment in Tennessee. It was such a blessing, but we no longer had use of the wheelchair with a lift that raised her to the height of the truck. At home we use her small truck with a wheelchair carrier on the back, but it wouldn’t make the trip to Tennessee. She had to climb up and down a ladder to get in and out of my 3/4 ton truck, and the 10 hour drive took a lot out of her, but we went for a second week.

After the second day of treatment, Chelsi developed a twitch in her face and head, which eventually went throughout her body. You can see in the muted video below that she has no control over facial movements.

We left Tennessee with much more education than we had before, but Chelsi plummeted once we returned home and she lost her ability to walk even a few steps. For days she couldn’t move, except for the shaking and twitching. Now, when we ask her a question, we have to wait for a verbal response because her head often shakes like she’s saying “no.”

The redness in her face is from CRPS. It now moves up to her hands, arms, and face, but most often her hands. When they’re red, swollen and hot she can’t use them for anything.

It took several weeks for her to recover, and it’s been a slow process. She takes everything day by day, struggling to get in and out of her wheelchair, doing everything in bed, but we haven’t lost hope. I’m not sure why the second week of treatment didn’t work as well as the first. It could have something to do with the havoc done to her body during traveling or it could be whatever else is going on in her system that’s still a mystery.

Either way, the program in Tennessee saved us, proving there is a future for those who suffer from CRPS and there is another way to deal with the issues.

When she’s up to it, Chelsi stretches her legs on a massage table. For pain, we use oils, wet cloths, and she meditates, listens to music, and works on relaxation. Anyone who has CRPS will tell you that pain medications don’t work. They have to go through multiple treatments to get any relief. From what I’ve learned, when CRPS takes hold, the brain no longer recognizes that the injured part of the body is still attached. It sends mixed signals to the nervous system, causing any type of touch or temperature change to overstimulate the nerves. This is why people with CRPS don’t wear pants in the winter or socks, shoes, or even blankets in bed. To heal, the brain needs to once again find and recognize the injured area. All of the medications, injections, and infusions only numb the area, causing an even further disconnect with the brain. This is one of many reasons why Chelsi has refused medication and invasive procedures. But remission is possible.

If you have CRPS or know someone who does, please research stories of healing. There are several available and many of them include rest, relaxation, and natural methods. Under doctor supervision, that is our plan for Chelsi.

In the past few days, the blood work numbers that were so worrisome last year before all of this started were rechecked. They’re even higher. I posed a question in the local CRPS group and nobody responded as having the same results. I haven’t found anything linking her test results to CRPS. So there may be something else going on. We have 4 weeks to get her numbers down before the doctor looks at other alternatives.

Chelsi is currently not taking any medication, and we plan to use what we learned at the program along with plant based nutrition to heal her body. I just completed the certificate program with eCornell to learn how to heal her through nutrition and Chelsi is enrolled in the health coach program at the Institute of Integrative Nutrition. Between the two programs, we have full confidence that she will one day be well.

I’m starting this online diary to hopefully help others in Chelsi’s condition to have hope for a cure. We’ve seen it. Every person is different. Every case of CRPS is different. You just have to figure out what works for you. Anything is possible. Hopefully this information will help in finding a cure or it will reach someone who just needs to know they’re not alone.

UPDATE: March 27, 2017

I found a new treatment to use on Chelsi called the Vecttor treatment. It was developed by Dr. Rhodes of The Woodlands, Texas. He has worked with over 1,500 CRPS patients, and with his help and that of one of his patients, we learned that Chelsi’s case of CRPS is different than most and more severe because she has secondary Erythromelalgia, also known as EM. It’s even more rare than CRPS, affecting 1.3 in every 100,000 Americans.

EM basically causes the blood vessels to constrict, causing the redness and heat in what we thought were “hot” CRPS patients like Chelsi. The more they do, the worse the constriction, which can be dangerous. Therefore we’ve changed her routine, meaning we no longer push her when she gets hot or has a lot of severe nerve pain, which is basically 23 1/2 hours out of the day.

People with Erythromelalgia love the cold, only get relief with their legs elevated on pillows in the bed, and they turn red and hot. That’s Chelsi.

She started using the Vecttor machine almost three weeks ago and because she has such a hard problem with heat she can only use the machine a few minutes at a time. It helps with circulation and basically heats up the body and Chelsi is already too hot in her legs and feet and other areas so instead of doing 80 minutes of treatment twice a day, some days she skips altogether and other days she only does 6 minutes. It’s going to be a slow and steady process.

We also found that frequency specific microcurrent helps to cool her down.

It was developed by Dr. McMakin in Oregon, based on a century old treatment. Chelsi has seen a local technician over the last month and last week we purchased a machine to use at home because just getting out of the house makes her too hot and her pain gets
worse. The machine works on the nerves and resets the body to certain frequencies. We’ve found that the nerve pain, relaxation, and new injury settings cool her off enough to use the Vecttor machine for a few minutes at a time. We’re hopeful that these two treatments together will be her magic “pill.”

Chelsi is also taking multiple supplements such as K2, magnesium, Vitamin D, calcium, taurine, Vitamin C, zinc, and potassium. We learned from Dr. Rhodes that her calcium is too high because it’s leaking from her teeth and bones into her body, which is the CRPS. Her protein is too high because it’s leaking from her kidneys, and her liver is high from the inflammation in her body. As for her Vitamin D, it was at 9. The normal range starts at 32. She hasn’t been outside in over a year and she’s allergic to dairy, so she’s getting no Vitamin D.

Thank you for reading Chelsi’s story. Please share her journey to raise awareness and to give others going through similar struggles hope.