My arthritis began in Paris. My husband and I had spent twenty-five years in the U.S. Foreign Service, serving abroad in many fascinating countries. We loved our life. We were assigned to Paris in 1986. Our tiny, charming Victorian apartment was in the 7th Arrondissment, near the Eiffel Tower, within walking distance of the U.S. Embassy across the Seine. I was 46 years old. In 1987 on a particularly gray, bone-chilling Parisian winter morning, I awoke with hot, swollen, aching knees. I couldn't walk to the Embassy and took a taxi instead. "It's the weather," everyone said. The aching knees went away, only to re-appear about a month later. This time my right big toe and left instep also ached. As the months went by, I noticed the aches seemed to come as part of PMS. Water retention equals inflammation, I reasoned.
I soon grew tired of this recurring pain, and I went to the American Hospital in the suburb of Nueilley. An x-ray showed nothing. The doctor said, "There's nothing wrong with your knees. You should lose weight." I left in disgust, and the monthly aching knees continued. I won the Embassy Weight Loss Contest and we prepared to return to the U.S. as our tour came to an end.
We arrived back in Washington, D.C. just in time for the Cherry Blossom festival in April 1989. Our household effects arrived, and we moved back into our house and began unpacking. I woke up one morning unable to walk. My knees were as big as cantaloupes, my hands hurt so much I couldn't hold my coffee cup; my neck was stiff and my shoulders were full of shooting pains. I literally cried from the pain. The partially-unpacked boxes screamed at me, "Get to work! Get to work!" "It's the lousy D.C. humidity," everyone said.
My GP said it was normal to have muscle aches after packing and unpacking 18 thousand pounds of household effects. Had I been lifting heavy boxes? "Well...of course your shoulders ache. Listen, you don't have arthritis, for heaven's sake." He gave me some Naprosyn, and it helped a great deal. I went back to unpacking.
Before we knew it, it was time to report to work at the Department. We were both assigned to our respective Bureaus and got caught up in the usual excitement of new, challenging jobs. I was soon working 12-hour days, and when I felt exhausted, I assumed it was the new job and looming menopause. I was so fatigued that some weekends I spent the entire time in bed. I was not a scintillating companion, my husband recalls.
My knee pain came and went like before, and I noticed that the pain in my upper body never settled down. It was either my hands, my shoulders, my arms, my neck, or my breastbone. "This stuff just keeps jumping around," I complained. It was a long time later, when reading "The Arthritis Breakthrough," that I learned that severe exhaustion and migrating pain are the early signs of rheumatoid arthritis. I continued to work as hard as before, but now I sort of limped from meeting to meeting in the long hallways of the State Department. The distances grew longer and longer!
In 1990, my left hip started to ache. I returned to the same doctor who again insisted, "You do NOT have arthritis. Why do you keep insisting? Are you looking for an illness?" A few days later, he admitted that my blood test shows an elevated rheumatoid factor and sent me to a rheumatologist. The new doctor gave me Naprosyn again. My stomach rebelled. He changed me to another NSAID. That was even worse, and my arthritis progressed. After six months, he put me on Plaquenil and said to come back in 6 months and we'll see how it goes. My ophthalmologist screamed "NO" because I had had retina problems. He chewed out the rheumatologist, and I changed doctors again, this time to a family practitioner. By this time I was taking 2,000 mg of enteric aspirin a day.
By now it was 1992. The family practitioner put me on 10 mgs prednisone and drained my knees every two months. He didn't know how to do it very well, but he really tried. I was now taking 3,000-4,000 mgs of aspirin daily. I walked with a cane, then two canes. I was skipping so much work that it became noticeable. My neck and both shoulders ached dreadfully. I could not lift either arm above my head and could not dress or comb myself. My knees were swollen and hot, and my hip kept me up all night. At work, I could no longer file my paperwork because my hands and wrists hurt so much I could scream. My subordinates floundered around without me; my life was falling apart.
In 1993 I gave up my supervisory position and went on shifts at the Operations Center (keeping an eye on the world while the policymakers slept!). Working the swing or graveyard shift was much easier for me as I did not have to go in during that awful morning stiffness. I could do my job sitting down and there was no filing. My only hardship was walking that long hallway to and from the office, but since there were so few people around at those off-hours, I didn't need to put on a brave front. My family practitioner turned me over to a new rheumatologist; he could do nothing more for me.
I was taking 10 mg prednisone daily, with 4-5,000 mg aspirin, and 3 Tylenol #3's (90 mg codeine) a day. In January 1994 the new rheumatologist put me on 20 mg per week of methotrexate (MTX). It affected me horribly, but I kept taking it because I'd read that "disease altering drugs" were the newest therapy. I could not work and take the MTX, as it made me vomit for days at a time. My aches and pains were worse than ever, my hip kept me disabled, my hair fell out. I could not sleep in my bed, so I moved to a leather recliner, where I spent most of 1994. I retired in November happily, momentarily forgetting that I had been the ambitious girl diplomat who was going places. One night, with overwhelming pain and unable to get up from my recliner, I wet myself and I started thinking about suicide. My life was over. I was only 54 years old!!
Somehow, from some deep untapped source, I summoned the strength to cry defiantly that this disease was NOT going to lick me. I had read an article by an Arthritis Foundation publication that said I had to "learn to live with it." "Like hell I do!" was my reply. I made a list of "things to do." 1) Stop methotrexate; 2) Learn to meditate; 3) Start estrogen therapy; 4) Check thyroid; 5) Start exercise program; 6) Get on the Internet to search for info; 7) Check out Chinese herbs; 8) Try acupuncture; 9) See a psychic healer (honest!!) 10) Eat more natural foods; 11) Try Chi Dong (Chinese exercises) 12) Remove silver-mercury fillings (the only thing I didn't get to).
In January 1995 I told my rheumatologist that a year of methotrexate had not worked, I hated it, and I was going to stop it. "Give me something else." He suggested antibiotics, saying he'd just read of a study that found minocycline quite safe for arthritis (apparently the MIRA trials). I was quite skeptical. (I had not yet gone on the Internet for my research!). He put me on 100 mg Minocin 2Xday, tapered my prednisone from 10 to 5 mg, and drained my knees frequently. I still spent 90% of my time in the armchair. In September '95 (after nine months on antibiotics) I went back to sleeping in my own bed. I was feeling quite a bit better, but my hip pain continued to keep me housebound. My rheumatologist said I should have a hip replacement. "No way, Jose," I say.
In February 1996 I realized I had to see an orthopedic surgeon. I had the replacement in March. From the moment I had my epidural, my hip never hurt again. I did my physical therapy religiously, even though my arms, shoulders, and ribs and breastbone still ached. Meanwhile, my legs started turning gray from a rare side-effect of Minocin (Minocin-induced hyperpigmentation). In August my rheumatologist left private practice to join an HMO and turned me over to Dr. Kempf of Arlington, Virginia (who inherited Dr. Brown's practice from Dr. Cap Oliver).
Dr. Kemp identified Minocin as the source of my darkening legs. "Let's see how you do without it," he said. Three weeks later I was regressing rapidly. He put me on generic doxycycline (same dosage) and slowly I felt better and better. By October 1996 I was down to 500 mg aspirin and no Tylenol #3s. I was fully recovered from the hip replacement. My ribs didn't ache; my breastbone was just fine! I found "The Road Back Foundation" on the Internet and joined the support mail list. I was feeling better at the cellular level, I told Dr. Kempf. At Christmas 1996 I baked cookies and cooked a goose for Xmas Dinner for the first time in SEVEN YEARS!! I kept losing my cane around the house.
In January 1997 I managed to go to the grocery store caneless. I got on my Health Rider and did 5 minutes. I got on my treadmill and walked 5 minutes. I was a new woman. My friends don't believe it's me. I look 15 years younger. I am hardly even stiff in the mornings. I still tend to tire easily by late afternoon. My knees still swell once in a while and my left shoulder continues to bother me a bit. But my hands don't ache and my wrists are stiff but pain-free. I plan to have IV antibiotic treatment to take care of the remaining problems.
My recovery has been full of small baby steps with occasional incredible leaps. My recovery from the hip replacement has been concurrent with the victory over RA. Sometimes I don't know which is which.
My life has been full of "little victories." The first day I could put on my own socks; the first time I could put on my underpants standing up; the first time I could put on a pair of pantyhose! Then lycra tights!! (It was both my bad hip and my aching hands that kept me from that one for so long.) Other highlights were the day I could walk 2 minutes on my treadmill at 1/2 mile an hour. Today, I can do 8 minutes at 1.2 mph, and also 5 minutes on my Health Rider (even though my knees still hurt a bit). I can now reach up and put away and take down anything from my top pantry shelf. Recently I put away a 5-lb bag of sugar. A year ago I couldn't put away my coffee cup.
I've come a VERY long way since the night I thought of suicide. I thank the woman I was THEN for giving me the courage to find the healthy woman I am now.