Jan’s (2) Rheumatoid Arthritis story
Dottie’s Rheumatoid Arthritis story
Jayme’s Rheumatoid Arthritis story
This is Jan’s (2) onset of Rheumatoid disease story, in her own words.
My name is Jan M. I am 58 years old, but if I didn’t color my hair I’d probably look 90. Diagnosed with RA: March 2003; RF test= 734 (normal is <20 or 30?) – don’t remember the other test results; because of test results my doctor stands by the “sudden onset” theory, however:
I had always been a “walker” and found over the years that nothing (not diet or other forms of exercise) could get me to a comfortable weight and feeling great like moving my arms and legs on a regular basis. In 1987, after the birth of my second child (12 years after the first), I began a walking routine (four to six miles a day, six days a week) that really whipped me into shape – in fact, the best shape I’d ever been in. I wore good shoes, as much of the walking surface was pavement (and my feet have always hurt); most of the ground I covered was level with only the last six blocks being steep downhill and then uphill. From the beginning of this regimen I suffered from terrible “shin-splints” and tried all sorts of PT recommendations to make them go away – they didn’t and I eventually gave up the intense, but rewarding walk for an “intense stroll”. I thought, at the age of 34, that I was experiencing the onset of aging. Funny the mind games we play…
In (about) the summer of 1994 I began to notice that strolling for exercise no longer made me feel energized, but so tired that I started to wonder if I really was getting old. I eventually put it down to the fact that I was working as a social worker, had gone back to school to complete my teaching certificate and was recovering from the loss of my mother to breast cancer, not to mention raising my family which included a six year old and a college bound teen. Who wouldn’t be exhausted? Yet to be honest, I recognized that this was a strange, body crushing fatigue and that it wasn’t mental, but almost entirely physical. These physical changes, I realize now, continued in a subtle way over the next eight years with periods that ranged from less fatigue to more which I simply put down to my crazy life (that eventually included completion of my first four years of teaching). I also gained weight, as it became all I could do to get through a day, and I still liked food; I blamed myself for all of the discomfort and the doctor agreed that losing weight would help (hmmm).
An uncomfortable “head to toe” achiness slowly set in between 2000 and 2003 which was worse when we traveled and I slept in hotel beds – then our bed at home became uncomfortable and we purchased a new mattress set; “uncomfortable” evolved into “unbearable” and my life became an absolute nightmare as I took to sleeping on our couch which had a soft, body-molding back and cushions. I blamed our new “too firm” mattress and my weight. By this time I was surviving on regular doses of Ibuprofen; with a dose taken before bed and my encompassing couch cushions, I could sleep for about six hours before waking to take more Ibuprofen. Sometime during this stretch, my “head to toe” pain began to manifest as stiffness and pain in both hands (left worse than right), then excruciating pain and swelling in my feet (I’d had a tendency to develop edema in my feet during the hottest days of summer since the birth of my first child; my doctor warned me to “watch it” – another hmmm) and calves, then both knees, my shoulders, neck, my jaw… just short of a wheelchair, it didn’t take much for my GP to decide what to test me for.
I was treated by my GP (who had several patients with mild to moderate RA) with the standard MTX, steroids (as needed), NAISDs, and Plaquenil, but five months later, after what was considered a serious side effect related to methotrexate and my complaint that I was having trouble breathing, I was referred to the rheumatologist of my choosing. I saw her for the first time in September 2003 (here I need to add that I am very glad I didn’t have to wait to see a specialist as some RA Warriors have) and she confirmed my GP’s diagnosis and referred me to a pulmonary specialist, who, after looking at my chest x-ray referred me to a thoracic surgeon for what they both believed was malignant mesothelioma. From October to December 2003, when I finally had an open lung biopsy, it did occur to me to reflect on “death by cancer”; to be honest, it made more sense that the white “spider webs” covering my lungs were the result of rheumatoid lung (originally suggested by my rheumatologist) and the research I had done made me equally afraid of that diagnosis.
To sum this narrative up: I was diagnosed (December 2003) with pulmonary fibrosis secondary to severe rheumatoid arthritis (involving all of my joints including my jaw, but with the mildest of symptoms in my hips for which I am grateful). My rheumatologist started me on Enbrel in January 2004 and I agreed to allow my medical information to be shared with a study of the efficacy of Enbrel in the treatment of rheumatoid lung. I have never received any feedback from this study (they may not have used my data), but I know that I am alive, eight years later and that as quickly as the pulmonary fibrosis was progressing that would certainly not have been the case without the Enbrel. My pulmonary doctor (who wanted to treat me with huge doses of steroids along with the Enbrel, but I refused) was surprised and pleased at the outcome.
During the past three to five years I have developed dry mouth, dry eye, Reynaud’s and other symptoms associated with Sjogren’s. I have not been able to take NSAID’s for the past three years due to side effects and survive on arthritis strength acetaminophen and Enbrel. I have a lot of pain in the morning until the acetaminophen kicks in and throughout the day depending on what I’m doing (I am a high school teacher librarian). There are almost always large and small joints in my body in a flare usually with swelling and I always know when my lungs are affected. Every few months I will have a few hours or sometimes a day (last month two) when, all of a sudden, I am relatively free of pain and swelling; those times are beautiful and terrible.
This is Dottie’s onset of Rheumatoid disease story, in her own words.
I am certain that many people can cite the date they were diagnosed with a serious illness and I am no exception. I was diagnosed with RA on May 9th, 2012, but now that I know my diagnosis, I realize my story actually begins on December 5th 2009. This is the day that I noticed I had a urinary tract infection. The days that followed proved that I had contracted a life threatening antibiotic resistant strain of e-coli that led to a kidney infection and multiple urinary tract infections. On that date, my life changed and has never been the same. I was treated with at least 10 courses of Cipro, other antibiotics and finally two treatments of weeklong IV antibiotics. In April of 2011, I had my last infection. Although I was ecstatic that I was no longer experiencing infections, I just never felt the same as I did prior to this infection. I was experiencing unusual fatigue and overall body aches much like one would feel when they have the flu.
Even though I didn’t feel well, I adapted quite well, or so I thought, I continued working as a technical support manager, housekeeping, and all the other things one does to maintain a stable life. I was also very involved in the Susan G. Komen Breast Cancer 3-Day walk. For 5 years, I had been team captain and trained and participated in this event. (For readers that may not know, this is 60-mile walk over 3 days). I loved being part of this event and had no intention of not participating in 2010. Although I did finish the 60 mile journey, I simply didn’t have the same energy for training and I was experiencing pain in my feet and knees that I had never had before, but I attributed the pain to have had gained some weight, having been ill, having been on lots of antibiotics, and numerous other things that I conjured up in my mind for reasons of not feeling well. I had to come to refer to myself as “downer Dottie” because I always felt so down and just “yucky.” In September 2010 I walked the entire 60 miles, but unlike past years, I had pain in my feet and felt unusually tired.
The fatigue and level of tiredness was unlike anything I have ever felt before and I just couldn’t believe the pain that had taken up residence in my feet! Not only did I have pain and fatigue, but on day 3 of the actual walk, my feet, ankles, calves and knees swelled up to a size that when I looked at them, I couldn’t believe they were mine. I was shocked! I had hardly even gotten a blister in years prior. After completing the walk, I spent a few days propping my feet up, applying ice packs and swallowing Advil like peanuts. I was only benefiting from a small amount of relief, so I went to my family practitioner where we decided my symptoms were caused by a combination of having walked such a long distance and having been so sick in the months prior. Eventually the swelling went down, but the pain still greeted me every morning and I winced every time I sat idle for a period of time and then stood up.
I seriously never even thought twice about the pain, I believed I had just “shot” my feet from walking too much. Then, in March 2011 the most significant clue arrived. Both of my shoulders and the deltoid part of my arms swelled up so much I couldn’t get some of my shirts over my arms; and then there was the pain! Oh my God, the PAIN! Again, I went to my local family practitioner. I remember very carefully taking my jacket off to show him my arms and trying not to physically react to how bad it hurt because I didn’t want to be judged as a “drama queen.” He reached over touching my right arm and I yelled “OUCH! Don’t touch!!” Seriously, just touching my skin sent me into writhing pain. We decided it was most likely a virus and it would go away. He advised me to return after 4 weeks if it had not gone away. After four weeks, I was still experiencing the same level of pain in both arms. He referred me to an internal specialist in Seattle (I live on a small island in the San Juan Islands north of Seattle). The internal specialist sent me to the rheumatologist that I have seen for a year.
I first saw a rheumatologist in April 2011. I walked into his office expecting a quick diagnosis and possibly a pill and to be sent on my way. After all, he is a specialist, and in my mind, that meant efficiency and fast identification of my issue and a treatment plan to get myself back to 100 percent. Much to my disappointment, after his initial exam, he warned me my symptoms were unusual and diagnosis could be a slow process. Well, he was correct, it was a slow process. Since none of my blood tests showed inflammatory markers, he was not convinced I had developed any sort of autoimmune disease. His first thought was that I had taken too much Cipro and that could have been causing tendon problems, a known side affect from the Quinolone class of antibiotics. After a few weeks that theory was dismissed, and I kept complaining of the pain in my arms, but only made slight mention of the pain in my feet. At this point, I still had not connected the pain in my feet, to the pain in my arms. He ran the usual tests, took some x-rays, ordered multiple MRI’s and even did a bone scan. He said, “I don’t see anything conclusive” and referred me to a neurologist. Over a course of months, I saw three separate neurologists and experienced the usual neurological exam, where we discovered a tremor in my head and hands, and some weakness in my arms, but from a neurological perspective, I had “nothing to worry about.” But just to make sure I had no neurological issues, I was set up for more MRI’s, 2 EMG’s a referral to a MS specialist where he performed a lumbar puncture. Since all the neurological testing was normal (well almost normal, but I will not bore you with those details) I was referred back the rheumatologist. Keep in mind, this has been a year now since I was first referred to the rheumatologist and it is May 9th, 2012. I had become very frustrated, but determined to be a “good patient,” trying not to display any signs of frustration. After the exam, I asked, “Are you any closer to a diagnosis?” He replied, “Yes. I think this is a tendon disease or rheumatoid arthritis” and was writing the lab slip to send me off for more blood tests. I replied, “Okay, but I’m sure that the blood test are going to come back normal and I just do not understand how my joints can hurt and be so swollen, but blood tests show no signs of inflammation. How does this happen?” It was then, I told him about my feet and how the pain had moved to my hands, elbows, and hips. He looked at my joints and said wait here, I would like to have an ultrasound on your joints. He was able to get me in immediately to the doctor that performs the ultrasounds. I watched the Doppler as the wand was rubbed over my knuckles. There it was! The synovial sacs around my knuckles lit up bright red. He then checked my shoulders and again RED, then he checked my elbows, more red! Every joint he put the wand on was red. Right before my eyes we could see the villain that had invaded my body and causing my pain.
I was finally validated that I did in fact have a reason for the pain and it was not in my head. For an entire year, I had been looking for a diagnosis and as soon as the ultrasound saw the inflammation a treatment plan was put into place. I am taking methotrexate for now and have been on it only two weeks. So far, I am not experiencing any miracles, the pain still persists, but I am waiting for the magic 6-week mark to see if it works.
So, this is my RA story. I don’t believe that my story is unusual, but it is my personal story and I feel the beginning of a life long journey of managing symptoms. After reading some of others stories, I feel so fortunate that I was diagnosed in a year. Even though it took one year for my rheumatologist to figure out my pain and I went through many expensive neurological tests, I am now very thankful that my doctor took extra care to not misdiagnose me and I know for certain that I have no neurological disease.
This disease has impacted my life in a drastic way. I was forced out of my job because my employer could no longer deal with my doctor appointments. I truly never missed work to stay home to tend to my aches and pains. I only missed due to appointments. Since this employer only allows 4 days of sick leave per year, I used all of my sick leave and my vacation time to go to doctors. (Remember, I live on an island, so going to a specialist means getting up at 5:30 am to catch a 7:00 ferry and then a two hour drive to the doctor’s office.) So, I miss an entire day for each appointment. I am no longer involved with Susan G. Komen and I spend my days learning trying to manage my pain, fatigue and appointments.
It has only been two weeks since my diagnosis and I am still in a big learning curve phase about this disease. My emotions are all over the place. I feel comfort in knowing my diagnosis is correct and now knowing what it is; I can make a personal health plan tailored to me and what I can do. I am making a choice to face this with a positive attitude, although I am finding this to be more difficult than it sounds.
In my personal health plan, I hope that I can include a piece that will find me be taking part in helping to find a cure for this disease. But for now, I am just trying to make a difference in my daily life and in my home.
This is Jayme’s onset of Rheumatoid disease story, in her own words.
Hi, my name is Jayme. I first started showing symptoms of RA my junior year of high school. My pointer finger was extremely swollen. When I showed this to my mother she said, “Jayme, you’re so clumsy, you must have jammed it.” But by the end of the week, when all of my fingers were swollen, I knew something was up. As the months progressed, my wrists, hips, ankles, shoulders, neck and knees blew up. In the morning for school, I had to scoot down the stairs on my bottom. Then, when I’d get in the car, I couldn’t grip the steering wheel. In English class (only 2 months after I BEGAN to show symptoms) my teacher had us write a timed 5-paragraph essay. I picked up my pencil, and was so frustrated when I couldn’t grip it, that I threw it on the ground and burst into tears. I finally convinced my mom to take me to the doctor that afternoon. I was diagnosed a few days before my junior prom. You try wearing 4-inch pumps while every joint in your body is throbbing. Needless to say, it was a miserable night.
I was first put on “Mobic” which worked about as well as a sugar pill would work. Finally, I was put on Enbrel, which has been my miracle drug. I’ve been on it for 4 years now, and am basically functioning as a normally developing 21-year-old college student. I’m so lucky to have been diagnosed in this day and age when medical care for RA patients is so stellar. I hope all of you who have not responded so well to medicine keep hanging in there. RA is terrible, but it could be so much worse. I’m grateful for the hand that I was dealt. There are much crueler diseases out there, and if this is what I was given, so be it.