After 5 days of skiing, my feet became very inflamed and were burning. I went to a podiatrist and was told I had plantar fasciitis and that it would be gone in 6 weeks. I used ice, did stretching exercises and took anti-inflammatory meds. My feet improved very slowly, and after 6 months (NOT weeks), I was almost normal. I could be on my feet for normal daily activities but could not power-walk a block, much less 4 miles. I could not be on my feet long enough to clean the house. You get the idea.

I started going to the gym in February, 1997, riding an exercise bike and weight lifting again. At this time, I also underwent some extensive dental work to remove all my mercury-type fillings. I didn't go to any specialized dentist; just my usual guy. He took no precautions to prevent the mercury from entering the air, the room, my mouth, or himself. The particles were flying all over the place when he removed the fillings.

Within a week or 10 days after the dental work, my feet flared up so badly, I could not even stand up to brush my teeth. I had to get a wheelchair and use that for all outings to grocery stores, mall, movies...anyplace that required being on my feet for more than 5 minutes.

Thus, I began the rounds to 4 or 5 more podiatrists, each believing I had plantar fasciitis and prescribing physical therapy, casting of my foot for several weeks and stretchers to wear to bed to pull on the fascia (these almost killed me because they caused so much pain all night). However, I stuck with them for 6 weeks but with no resulting pain relief.

I saw a rheumatologist for a complete work-up for arthritis and related problems. The tests showed nothing wrong. I had 3 EMG/nerve conduction tests at three different places over the next year to 18 months. I had months of acupuncture. I had months of chiropractic care from several different chiropractors, each with a different technique. I purchased almost $3,000 worth of orthotics, inserts and special shoes. The pain and disability continued.

In January, 1998, I had an endoscopic plantar fasciitis surgery to sever the plantar fascia from the rest of the foot, partially. I had the right foot done and was hopeful that in 6 weeks, I would be cured and have the left foot done. It took 3 months to recover enough from the surgery to even walk without the boot or crutches. The incessant burning continued. I wasn't any better, and didn't have the left foot operated on!

The podiatrist who did my surgery was in Houston (I lived in Seattle area). He next prescribed Neurontin for the burning, which helped a lot. But, the pain continued, with less burning and I still had to use a wheelchair.

Then, in November, 1998, my arms suddenly became inflamed and painful. Both arms, from the hand/wrist to the shoulder, were burning and had shooting pains. My hands became so weak I couldn't open any jars. I was dropping things.

I went to a neurologist and had an MRI. He found nothing, told me to exercise more (I guess he didn't hear the part where I'm in a wheelchair and can't stand up even long enough to brush my teeth).

I sent my MRI to a doctor in Texas that was supposed to have a lot of expertise in MRI's of the feet. His review found nothing helpful.

One of my doctors prescribed a 2 week course of prednisone and Elavil. Neither of these drugs helped with the pain/burning. I quit taking the pred., but continued on the Elavil for a couple of months, with no result.

I went to a pain specialist in Laredo, Texas (I lived near Seattle then), who did a procedure where he inserted a catheter into my lower back, and injected anesthetics. He belived I had Reflex sympathetic dystrophy and this procedure was to confirm it. I had the catheter in for 4 days. I went to his office daily for the injection into the back, but after 5 days, I was showing no improvement. At that point, he prescribed methadone for pain control, and told me to continue with the neurontin.

I then went to the Chopra Center in La Jolla, CA, and saw Dr. Simon, M.D. He referred me to a renowned neurologist at U.S.C. in Los Angeles, Dr. King Engel. I had another EMG/nerve conduction on my feet (the fourth!) and also on my arms. The doctors performed a muscle biopsy and a spinal tap as well. I was told I have Chronic Inflammatory Demylenating Polyneuropathy. I underwent three week-long courses of IVIg (intravenous immunglobulin). After $80,000, I hadn't improved a bit!

Dr. Engel told me he had nothing left to offer, just keep taking the methadone and neurontin.

The methadone enabled me to get rid of the wheelchair, and I can be pretty normal now as long as I don't stay on my feet too long. The weight lifting and power-walking are history, but I can go to the store without a wheelchair so I am thrilled! I am still in pain most days, but its tolerable. Sometimes, I have a "flare-up" where my pain/burning increases dramatically and so I take more of the neurontin and methadone until I am better. So far, I have always returned to baseline - my new "normal" state - some pain, have to be careful not to do too much, but can be fairly normal.

I haven't even gone into the psychological problems this has caused me and my family. My husband could not accept the wheelchair, and kept after me to find a remedy. At times, this was annoying, but overall, his support has been phenomenal, considering my condition has changed his life almost as much as its changed mine. And, it's because of his continued demands to keep hunting for a cure that I went to Dr. Engel, and was diagnosed with CIDP.

Cindy B.
Burdue@thegrid.net


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