Cheryl’s Rheumatoid Arthritis story
Diane’s Rheumatoid Arthritis story
Bethany’s Rheumatoid Arthritis story
This is Cheryl’s onset of Rheumatoid disease story, in her own words.
I am 54 years old and was diagnosed with Rheumatoid Arthritis (RA) 5 years ago. However, I believe that I probably had it for several years before that, as it would explain a lot that was going on that I couldn’t understand. To begin with, I was TIRED… no matter how much sleep I got or what I was doing (or not doing) physically I just didn’t have any energy – I would wake up exhausted! I remember more than once my daughter or husband saying “You’re always tired! What’s wrong with you?”
Occasionally I would run a low-grade fever for a few days with no other symptoms of illness. I also averaged 4 or 5 ear infections with a sore throat every year, with lots of antibiotic treatment; and I never had an ear infection as a child! If I got up at night and when I got up in the morning I could hardly walk my heels and feet hurt so badly. I thought maybe I had fractured a bone in my foot (one hurt more than the other) so I went to an orthopedist who took x-rays. When he came into my room he said he thought he had the wrong patient because while looking at my x-rays he thought I was at least 70 years old! (I was in my late 30’s) However, he didn’t seem to take that thought any further, and instead put me in a walking boot… Not much help there; I continued to have the foot pain.
Fast forward several years and many symptoms later and I hit a time where I was experiencing a lot of emotional upheaval, some was good but most was not and I do believe that stress can exacerbate the onset of RA. Any one of the many life-changing things that were going on at that time would have been difficult to deal with, but for someone who was waking up exhausted and inexplicably having more and more stiffness and pain, it was pretty overwhelming. To add just a bit more stress, we now had an empty LARGE nest and we decided to downsize, especially to get a one story home, as the stairs were becoming my worst enemy.
Then a symptom that I had experienced before returned with a vengeance: my leg muscles HURT. I would lay awake at night trying not to cry because the muscles hurt so badly and were so tender that I couldn’t sleep; I had also had this previously in my forearms. I had gone to my GP a couple of times and complained about my fatigue and muscle pain etc. and he didn’t seem to be too concerned; he would mention exercising to increase my energy (I wanted to laugh but didn’t think he’d appreciate it). Finally, I went back and told him there was really something wrong and I wasn’t leaving his office until we figured out what it was.
I went over my complaints again and something must have clicked because he said he wanted to do a test for lupus, RA and other assorted horrible things. After the appointment I went home and looked up RA and lupus on the internet and I KNEW without the test results that I had RA – everything I read was eerily familiar. My doctor called a couple of days later to say that I did not have Lupus (thank God), but that my sed rate was very high and my Rheumatoid factor was positive. He gave me the name of a rheumatologist and said he would call ahead to get me in as quickly as possible.
When I went for my first appointment the rheumatologist was very nice, seemed to take my symptoms under consideration (although a couple of times he said ‘Really?’ as I described various joint /muscle problems) and then he looked at my feet and hands and said he thought I did have RA and that he wanted to repeat the blood work to see if anything had changed in the 4 weeks since the first tests. The results came back with even higher numbers and I also found out that I am positive for the HLA-B27 gene, which means I could have Ankylosing Spondylitis (which my mother had). After more questions and more examining he determined that I did have RA. He didn’t talk to me about RA, didn’t tell me what to expect or about any of the long-term implications for the diagnosis. He put me on an anti-inflammatory and methotrexate along with folic acid and sent me on my way.
I’ve been on varying doses of those meds since then, and prednisone several times especially for my right hand which gives me trouble by swelling every time I attempt to open a bottle or jar lid that is too tight, or just generally over use it. I don’t really have much visible swelling except in my right hand although I can feel swelling in my knees, and my joints don’t get red or very warm. My x-rays show very little damage (thank God) in my hands even though they bother me the most.
When I wake up in the morning there is now an automatic assessment that takes place which I am sure is familiar to all of you: where does it hurt today, and how bad is it? What will I be able to do, or what will I need to cancel depending on where the pain is: hips, ankles, knees, elbows, wrists and now my neck and occasionally, my shoulders. Deep sleep is a luxury and I have to take Ambien and/or hydrocodone most nights to get any sleep at all; I wake up every time I move due to pain, and usually can’t pull the covers up due to my painful hands; I have learned what to wear to bed that makes it a bit easier (slippery, soft, stretchy nightshirt, leggings and large warm socks) and that it’s better for my toes if I un-tuck the sheet and fold the comforter up so it doesn’t put pressure on my feet.
I just came out of the worse flare I’ve had, about 3-4 weeks of extreme exhaustion with ankle, hip and wrist pain, and very little sleep even with Ambien and hydrocodone. Prednisone finally brought me out of it; boy do I love that drug, except of course for the side effects. When I take it I can almost convince myself that I don’t have RA, especially with the increase in energy it gives me. With each flare it seems I’m just a bit worse for wear and don’t quite recover to where I was before. However, I am thankful that I seem to have a milder case than many others.
Thankfully I have a supporting and loving husband, family and friends; without them it would be impossible to deal with this.
When people find out I have RA I get various responses, but often its: “Oh, I have arthritis too, in my left knee, my right thumb, etc.” and I just don’t want to tell them that they don’t understand! I know that THEIR pain is very real and I don’t want to seem that I’m minimizing it. It is apparent that unless someone has had this disease touch them personally in some way, they simply do not get it.
After so many years, I am beginning to understand that I have to decide how I spend the energy that I DO have, and that if I overdo I will pay for it! Hard lesson for this gal, though.
I will close by saying that my deepest concern is that my daughter or granddaughter could end up with this; I pray that they don’t.
This is Diane’s onset of Rheumatoid disease story, in her own words.
On March 24, 2006, I decided to get into shape and took a walk around the block. The very next morning, I had trouble walking to the bathroom my feet hurt so bad. It was all a joke with my young boys, they still joke about it today. “Hey Mom, wanna go for a walk”. Anyway, it progressed rapidly from there. I then had trouble lifting my legs to put my underwear on, getting in and out of the shower, sitting on and getting off the toilet, getting in and out of the car, turning the steering wheel. I had no idea why I was in so much pain. I was exhausted, couldn’t sleep through the night. I had no idea what was wrong with me. During the next 4 months, my ankles, elbows, feet, and then hands hurt. My ankles and elbows were hot and swollen, but not my hands. On 2 separate occasions I drove myself to the emergency room because I didn’t know what was wrong and wanted a diagnosis. Each time they prescribed either Percocet or some other painkiller, but no diagnosis. I didn’t even bother filling the prescriptions.
Eventually I saw a rheumatologist. I don’t remember how I got to that point, just that I did. He ran a bunch of tests, came back seronegative, and informed me I had RA. I remember him telling me that 30% of the people with RA are negative.
So there you go, I had my out. I wasn’t positive, so I didn’t have RA. I went into denial and until about a month ago hung onto that negative test. I haven’t had a flare like the first one; therefore I don’t have it. They’re wrong. Yet I have constant pain in my feet and hands, and a nodule on my right elbow. No damage yet according to x-rays but the pain in varying degrees all the time. I’m tired of the pain. It’s bearable, I’m functional, but I’m tired of hurting all the time.
I delayed the meds because of denial and not wanting to take anymore drugs than necessary. Why take the toxic stuff if Motrin keeps it bearable? Well, I finally started methotrexate last week. I was worried about it put took my doses Thursday. Ha, piece of cake, all that worrying for nothing. Felt great Thursday, Friday, Saturday… today not so much. Tired, stomach upset, nausea, and pain everywhere.
So that’s part of my story so far. We’ll see where it goes from here. Hoping the symptoms today are just a coincidence.
This is Bethany’s onset of Rheumatoid Disease story in her own words.
First, I want to thank you, Kelly for your onset story, and for posting others’. It has really helped me to understand the disease I will have the rest of my life, and allow ME to define IT, rather than have IT define ME.
So like an AA meeting, here I go: My name is Bethany <hello Bethany>, and I have RA.
I have probably had RA most of my life. As a child, I was (wrongly) diagnosed with food allergies (it was a popular diagnosis back then for anything the pediatrician couldn’t diagnose conclusively). As an adult, I have chronic microcytic anemia (14 years), and fibromyalgia (10 years). I was overweight, but very active – I showed dogs in obedience, agility, and herding trials. It was my favorite thing in the world to take my dogs out and let them do what they took so much joy in doing! The fibro didn’t slow me down that much – I’ve always been able to keep it under control (until six months ago) by simply taking OTC Naprosyn twice a day. Exercise kept me from hurting too much. I had a dream job as a technical writer and computer systems analyst, going to college full-time, and showing my dogs on weekends. I was always moving, but if I ever sat still for 10 minutes, I’d fall asleep (a side effect of the Aranesp and Procrit I was taking for anemia). Then the bottom dropped out.
In 2002, I had a fall backwards down the stairs at home. That injury resulted in two herniated disks and one bulging disk in my lumbar spine. The pain was almost unbearable. I finished my degree in a wheelchair, but I WALKED across that stage to get my diploma! A week later, I went in to have a double spinal fusion. The surgery took 14 hours, and I caught the dreaded MRSA infection and very nearly died. I was sent home on 22 weeks of IV antibiotics at home. I was almost finished with the antibiotics when I came down with Stevens-Johnson syndrome. I lost most of my hair, and all the skin on my hands and feet. My kidneys nearly ceased to function. It was a tough year. There were frequent falls and I learned that the screws securing the rods in my spine had broken off and were floating free. Since the fusion had not yet knit, I had a “false joint”. I was from then on confined to a wheelchair. The next year, five days before Christmas, my husband of 20 years left me. I was alone in the house, unable to go down stairs alone, and fell often. I fought against it, but I had to go live with my parents with nothing but my dog, my clothes, and a few small pieces of furniture.
The next autumn, after some ugly legal threats from my healthcare attorney, the insurance company finally approved the surgery to correct the false joint. To my great surprise, it worked! I was well advanced in my physical therapy when the other shoe dropped. I was at PT one day on the treadmill, and suddenly heard a loud crack. The pain was awful. PT was discontinued and I had an immediate appointment at the orthopedist. My left knee was bone-on-bone. The right knee was a little better, but not much. The inflammation was severe. I was only 44, but I needed a total knee replacement. Don’t let anyone ever tell you that TKRs are painless.
The TKR on the left knee was done first, and it was awful. The pain wasn’t well controlled, I had to be transfused three days straight, and they wouldn’t let me up for those three days. I finally got to go home, but I was such an awful patient they were probably glad to get rid of me.
At my first post-surgical follow up visit, the orthopedist handed me a sheet of paper. It was a pathology report on the tissue removed from my knee. It said RHEUMATOID ARTHRITIS. It was a shock. I already was being treated by a rheumatologist for my fibromyalgia, so I brought this lab report to him on my next visit, and asked him about it. He told me not to worry, and this famous quote, “You can’t diagnose RA from a pathology report.”
Two years passed. My back is better, I have learned to walk again, and my divorce is granted. I meet a wonderful man (my Steve) and we married the day before New Years Eve 2009. Life begins to look pretty hopeful again. Steve began going to my medical appointments with me so he could understand what I was having to deal with. Then, the inevitable happened: the right knee blew out. By now, it was old hat – I made all the arrangements, and Steve had all the worrying. This surgery wasn’t nearly as hard to recover from as the first one, even though there had to be ligament repairs so that I would be able to extend the knee again. With all my hospitalizations, no one had ever offered to spend the night there with me, and I was OK with that. Steve refused to leave, so the nurses brought him in a big comfy chair. The night shift giggled when they saw us both asleep – me in bed, and he in the chair, holding hands.
This time, there were no complications, and I was up and walking within 10 minutes of being assigned a room. I only stayed a few days, and then went home to recover in a hospital bed in my parents’ dining room. Steve spent a couple of nights in a straight-backed dining room chair before I insisted he go upstairs to our bedroom and get a decent nights’ sleep.
The second pathology report came back with an RA diagnosis, too. My next rheumatologist appointment, Steve went with me, armed with the two reports. Steve is an ex-Air Force sergeant, and talks like he’s giving orders. That’s just his way, and if you don’t know him well, it can be a bit intimidating. When the doctor arrives in the room, he takes the bull by the horns, waving the reports around. “How MANY joints does my wife have to LOSE before you diagnose and treat her!?!?
I started Plaquenil that day. It worked well for me. I had very little GI side effects, and they were mitigated by taking one tablet in the morning and one in the evening, instead of taking them both together. I might also add here that I have had many blood tests in the past for RA factor, but I am one of the 20% that test seronegative. My rheumy said my x-rays of hands and feet were not showing “significant changes” enough to start any DMARDs (what? My thumbs are all wonky and I have nodules under the skin).
Fast-forward another year. A combination of wacky weather, moving into a new house, and the stress of having a house to take care of again and a working husband to cook for all conspire to give me the most humongous flare of both fibro and RA the likes of which I had never experienced before. For months, I have problems moving – having to carefully pace, and try to figure out how to do things while keeping ice packs on various parts of my body. Finally, my rheumy appointment comes up. He looks at my hands thoughtfully, then my feet, and looks at the films just taken of my hip and shoulder. He turns back to me and says, “OK, we can start you on methotrexate now.” In a way it was a big relief. I had insisted for two years that RA was what I had, and he had told me no, it’s not that. Now he agrees with me.
I’ve now been on injectable methotrexate for six months. It has done wonders for my inflammations – no “joint fevers” in all that time. My rheumy’s treatment protocol for me calls for Biologicals next, but won’t choose one until that time, since that could be months or years from now. Giving myself injections is not too big of a deal, as I have been doing my own Procrit and Aranesp injections for 12 years now. It’s just another injection to put on the schedule. I am hopeful that remission is in my future, but I know I will never be able to run another agility course or train a dog to the Utility title. But as much as I have had to give up, I try to focus on what I can do, not on what I can’t.