Middy’s Rheumatoid Arthritis story
Nancy M’s Rheumatoid Arthritis story
Sarah O’s Rheumatoid Arthritis story
This is Middy’s onset of Rheumatoid disease story, in her own words.
I have always been a pretty active gal. I love to travel, love to learn, adore my kids and loved my career in nursing. I planned my life and future around caring for others. I got married young at 19 in 2003, and had my first child at 20. All during the early years of my marriage I had pain in my joints. I had horrible fatigue, I would wake in the morning and find it nearly impossible to get up and keep going. Doctor after doctor diagnosed me with depression, sprains, carpal tunnel, bursitis, and idiopathic injury. I even had one tell me that it was in my head. My labs were always normal aside from an elevated WBC and the only clinical signs I ever showed was redness and swelling in the joint I was having checked out at the time.
I worked 2 jobs at a time, raised 3 kids, and ran a household. Over the years the fatigue and night fever and pain would worsen and worsen. After losing my oldest son in 2008, my physical aches pains slipped into the background and I learned to deal with them. In 2010 my youngest child was born and his father and I separated the same year, along the way I was diagnosis with gastro paresis. All along my joint pains and fatigue were slowly becoming worse and worse and worse. In 2011 I was at my nursing job working the night shift and I fell injuring my knee. After a long fight with the companies insurance I gave up the fight and severed my ties with the company and tried to deal with the injury on my own.
The grinding sensation and pain in that knee not only never subsided, but seemed to intensify; the other knee began feeling just as painful. I began to notice severe pain in my hips, wrists and hands as well. In my case it was like I went to bed healthy aside from a sprained knee and awoke feeling like I had the flu. I was very tired, in a lot of pain, and often ran fever at night. As a last ditch try I decided to see a doctor and for once demand that they finally find a way to help me. My PCP ran labs and put me on ibuprofen and antibiotics (once again suspecting injury or the flu). The labs came back and everything was normal aside from an elevated WBC, he sent me home with nothing, no answer, no treatment, no explanation, no hope. I began to feel that this was my life and no one could ever help me. I was devastated, here I am a single mother, who had been out of work for a year for a phantom illness that no one could seem to diagnose much less treat.
After a week of crying and literally begging God for death I called my PCP back and broke down on the phone. At this time, he agreed to send me to see a specialist. My first visit to the rheumatologist was nerve wracking, I felt overwhelmed with blood work, x-ray, ultrasound, questions and paperwork, but also relieved that he seemed to truly be looking for the answer I so desperately needed. It took 4 weeks for the clinic to review all of the labs and tests and a month later there I was back in his office. The moment he told me I had RA was both devastating and relieving. I WAS NOT crazy. After all this time that I felt so bad here was an answer. It was a diagnosis that I was terrified to face, but in my opinion, knowing the enemy is a huge part of the battle. I started methotrexate and prednisone, along with Lortab, ibuprofen, and Aleve, for pain. I take folic acid every day and a multivitamin. I have never been one to need medication so swallowing pills and giving myself injections has been a new thing for me to get used to. Most days feel like my schedule revolves around which meds to take at what time.
The doctor had to add Nexium and Phenergan for the GI problems I have because of the methotrexate. I am about 12 weeks in and do not feel any different. At my follow up my doc increased my mtx, as well, he ordered new x-ray of my hips and knees and gave me cortisone injections in my hips, the knees will be injected in my next appointment. The grinding feeling in my knees and hips has never gone away, the injections seemed to help in my hips a little, they take a bit of the edge off of the pain but the feeling that my joints are lined with sandpaper has never really gone away. I am 27 years old now and face the fact that stairs are my arch enemy; I cannot climb them without getting on my hands and knees. I cannot stand for long periods; I cannot sit for long periods. My knees and hips give out so I have frequent falls.
I am a single mom and my son is two. I cannot get in the floor with him; we both have to wear clothes with primarily no snaps or buttons. My father opens all of my jars and bottles for me, and at times brushing my teeth is nearly impossible. I am at a frustrating time in my treatment and I wonder if this is my life, I wonder if it will get better or if I need to just accept it as it is. I long for some of the treatments that others write about, the “miracles” that they made. I long for a life when RA is not a daily consideration, where pain is not a fact of like, and where I can get enough sleep to feel rested.
I continue to take online courses at a community college because I cannot stand the thought of doing nothing. I lament for the loss of my health in my 20’s. I miss the days when all I had to worry with was which next job offer to consider, what movie I want to see on Friday, what I want to plan for my kid’s birthday. I long to be 27 and not living with a chronic illness, but that is not the life I was given, and I refuse to give up just yet. I am ready for the next phase of treatment, hopeful that they will finally find which meds work for me. I teach people as often as I can about RA, there is such a misconception that it is “just arthritis”. I go forward daily filled with hope, not only for myself but for everyone who joins me in this struggle. Knowing that others have been here and made it to a better quality of life inspires me to keep trying everything. My prayers and thoughts are with anyone battling with RA, together we can educate the world about this illness and help prepare the next group of doctors and scientists who will be searching for our cure or someone else’s prevention. My biggest motivation is the belief that better things are to come. <3
This is Nancy M’s onset of Rheumatoid disease story, in her own words.
My name is Nancy M. and I am a newly diagnosed patient with RA. I was diagnosed in late April 2012. I, like many newly diagnosed patients, went through a series of doctor visits to finally come to the RA diagnosis. At the end of December 2011, I tore the meniscus in my right knee. I saw an orthopedist who ordered an MRI to confirm the tear and wanted to do surgery. Since I am 50 and no longer the athlete I once was, I asked for a more conservative treatment, and he said he could give me a one-time only cortisone injection in the knee for pain. He told me it could work for 6 months or it could only last a short time.
Well, it stopped working around mid-March. I made an appointment to see a new orthopedist, one who would give injections into the knee to repair cartilage (SynVisc-series of 3 weekly injections). I saw him in early April. He took x-rays of both knees before the injections and said I barely had any cartilage in both my knees. I had played volleyball 4 days a week in my 20s, and then after having kids, took it up again in my 40s. He asked me if I wanted an injection in my left knee (seeing as I had no cartilage in that knee), and I said no, it wasn’t bothering me. He injected me in my right knee and I was on my way.
Within a week I had a lot of pain and swelling in my left knee, so when I went back for my weekly injection for the right knee, I asked him to give me an injection in both knees, which he did. That was on a Tuesday. By Friday morning, my left knee had swelled up double its size, and I could barely walk. I limped into the ER of my local hospital thinking I had an allergic reaction to the injection. They couldn’t find anything wrong after doing a whole bunch of tests, ultrasound on my leg, thinking I might have a blood clot, blood test to check my white blood cell count and everything came back normal. They chalked it up to osteoarthritis, wrote a prescription for Vicodin and sent me home. The swelling never went down, and I was on crutches going to work because I could not walk without them.
I started doing some research, put my symptoms in a symptom checker website and came up with rheumatoid arthritis. At that point, I made an appointment with an internist. I saw my internist about a week later telling him of my story, and he ordered blood work for rheumatoid arthritis. The test came back positive for RA, and I made an appointment with a rheumatologist for a few weeks later. In the meanwhile, my doctor prescribed Prednisone to decrease the inflammation. It helped but I was still on crutches. I saw the rheumatologist who had some x-rays taken of my hands, my heart and ordered more blood work because she was going to prescribe methotrexate and folic acid, the standard RA treatment.
While waiting for the results of my blood tests, I started to do a lot of internet research about RA. I found a blog that claimed RA and pretty much all autoimmune diseases are because of diet; how if you cut out red meat, sugar, caffeine, processed foods, ie. foods that inflame joints, everything would be fine. This was being advocated by a doctor who was pushing a “functional medicine” approach, which is finding the cause of a medical problem and not just treating the symptoms, i.e., throwing medication at a problem to suppress symptoms. Well, this made sense to me and that very day cut out the foods he spoke of. Within a very short time, I started to feel much better, the swelling and pain in my knees were drastically reduced. I set aside my crutches and was able to walk without them. Meanwhile, my blood tests came back and they showed some irregularities, and my rheumatologist had me see an infectious disease specialist. I saw the infectious disease specialist in late June and told him my story, told him about how I had changed my diet ever since the diagnosis of RA and I felt much better. I told him I was surprised that my rheumatologist mentioned nothing to me about dietary changes. He told me he wasn’t surprised because diet is not taught in medical school. Pretty shocking.
My blood tests came back normal, and I thought, I feel fine so I am just going to continue eating right, which I was losing weight because of the new diet, thus less weight on my knees, etc. I am not going to have to go on the nasty methotrexate.
That brings me to last week when I woke up one morning and my right knee was swollen, my left shoulder and neck were painful when I moved them. I was so tired I could barely make it to work each day. That is when I realized I was having my second “flare,” and sad to say, my new diet wasn’t going to be enough to see me through this disease. I was pretty depressed until I found the RA Warrior website where Kelly said that methotrexate is a “powerful weapon, and a RA warrior needs every weapon that proves useful.” I have emailed my rheumatologist today to confirm that I want to start the methotrexate and folic acid medication and am waiting for a confirming email. I am scared to take the medication, but my quality of life during these “flares” is just not acceptable to me, and I am not going to give in to this disease without a fight.
This is Sarah O’s onset of Rheumatoid disease story, in her own words.
I’m writing this now because I finally accept that I live with this disease. I went through all the stages of grief, and have arrived at the final one, acceptance. This gives me strength and clarity in my perception of myself. Instead of feeling weak and damaged, I recognize how strong I am, to continue living my life on my terms instead of my illness’ demands.
A year and a half ago, I started to have significant pain in my left hand. I remarked to my husband that my hand must have “book fatigue,” and attributed the pain to how much I read and how I hold my books in my left hand! Now, I know it was the beginning of RA symptoms. My back had also begun to ache so severely, which I noticed but wrote off as getting older (although, only 34 at the time!) My left foot was very stiff every morning, and hurt to walk upon for about an hour.
About six months later, roving joint pain began. I didn’t research or go to the doctor. I didn’t want to face another complication in an already too-complicated life. I ignored it, as much as I was able when not suffering in pain. A joint would be sore, ranging from annoying tinges to overwhelming pain, but would only last for a couple of days, then go away as if it had never been. These episodes occurred only once a week at first, then became more frequent, two times a week. I was fascinated by it (as a scientist), more than worried, because it was so odd (and I was in a fair bit of denial.) The pain was not debilitating at this time, just annoying. It moved from joint to joint, never two at the same time. It felt like a virus or bug in my body that moved around and struck one joint for a couple of days, then moved on to another.
The joints affected were consistent with the overall pain I have today, which is no longer roving, just there. My left shoulder and hand. My right elbow, hand, hip, knee, foot and toes. The pain began to increase, causing individual joints to be useless for at least 36 hours or more. When I had to call into work one day because my right wrist was unusable, swollen and incapacitated, literally as if it was broken, I made an appointment to see my doctor. She ordered a blood test to check for lupus and RA. The RA factor was a strong positive, along with the anti-CCP.
She started me on 17.5 mg oral methotrexate (MTX) once weekly, folic acid 1mg daily, Mobic 15mg daily, and a week-long prednisone dose to temporarily help my pain and swelling. I met my rheumatologist a month later, and she added Plaquenil 400 mg/ daily. I was sick from the MTX for two days a week. This subsided over time, to become a kind of anorexia for a couple days instead, or loss of appetite. But my symptoms abated, the tradeoff was worth it.
I saw my rheum (doctor) a week ago, and told her my pain was starting to increase again. She changed the MTX to 20mg/weekly via self-injection. My husband administers it for me. I am very active, with two small children and working as a floor nurse part-time. I cannot slow down; it’s not a possibility. I nap a little more, my house is a little less clean and organized, and I depend on my husband more. I will be vigilant and honest about my symptoms, and count on my rheum (doctor) to help me. This is all I can do.
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