Amy’s Rheumatoid Arthritis story
Jackie’s Rheumatoid Arthritis story
Tonya’s Rheumatoid Arthritis story
Elizabeth’s Rheumatoid Arthritis story
This is Amy’s onset of Rheumatoid Arthritis story, in her own words.
I finally decided to write my onset story too. It’s been a great comfort to read others!
The only visible symptom I had before my first onset of pain was fatigue. I had been very tired for several months and just chalked it up to a hectic schedule. I was working full-time, had 2 teenagers, a toddler and a baby, so who wouldn’t be tired, right? Oddly enough, in July 2007 I had surgery on my wrist to repair torn ligaments from an injury and my CT scan of my hand and wrist showed some erosion indicative of Rheumatoid Arthritis. However, when tested, I was negative for the Rheumatoid factor, so the orthopedic doctor I was seeing just brushed it off and I didn’t think anything about until several months later.
I remember the date of my first pain because it was my youngest daughter’s 3rd birthday, January 20th, 2008. It was 10 days after my 42nd birthday. We were having a party at our house and I noticed my right ankle was a little sore but I was busy and didn’t think too much about it. The next day was a Monday and I went to work as usual. My ankle was hurting a bit worse and I wondered what I had done to it. Maybe I twisted it getting ready for the party and just didn’t remember? It was also starting to swell. By the next day, I had a “goose egg” on my outer ankle and was starting to limp badly. It was very red and warm. I called my doctor’s office but he was out of town and they scheduled me with another doctor. I left work early that day to get to the doctor. Little did I know that when I locked my office door and badged out, it would be my last day of work!
I was the last patient of the day and was being seen by the only doctor in the practice that I didn’t really like, but I had no choice since he was on-call for my doc. He looked at my ankle for about 30 seconds and diagnosed me with gout and sent me home with an anti-inflammatory prescription. I was very skeptical, as was my nurse friend who works at the doctor’s office. I filled the script and went home to lie down and elevate my ankle. I called my work and told them I was taking a couple days off until I could walk better.
By Friday, my ankle was only getting worse and I called the doctor’s office and was scheduled with another doctor at the practice. He spent a lot of time checking me over, took x-rays and decided to aspirate my ankle, which he was very unskilled at, bless his heart. I nearly passed out after his three attempts to insert a needle in my very swollen ankle joint. He started me on a heavy-duty antibiotic because he suspected I had septic arthritis. He also called a rheumatologist and set up an appointment for the following Tuesday. I was very lucky this doctor acted quickly and I didn’t have to wait months to see a specialist.
My labs came back negative for sepsis and the Rheumatologist saw me the following week. He did a huge amount of lab work and told me he suspected Rheumatoid Arthritis. I had heard of it, but had no idea what I was in for in the months and years to come. I am sero-negative for RA so it took awhile for an “official” diagnosis because we just had to monitor my sed rate and symptoms. I also insisted on a second opinion, so in March of 2008, I was sent to IU Medical Center to see their specialist and he also highly suspected RA. I have had trials of Prednisone, Methotrexate, Enbrel, Remicade, Orencia and Actemra, all of which have not helped and my symptoms continue to get worse. My first nodule showed up on my inner wrist a few days ago and I am now getting big lumps on the top of both wrists. I have pain in many joints. I will be starting a new infusion next week so I am still hoping for something that helps!
This is Jackie’s Rheumatoid Arthritis story, in her own words.
My name is Jackie. I’m 21 years old… in 2007 I had an accident I slipped and dislocated my left hip while changing clothes… Days later, I couldn’t get out of bed, so I went to see a chiropractor. That helped me a lot. I was in a wheelchair for a few months and in bed rest for months. Eventually, I started walking again. I felt fine so, I went back to school and got my medical assistant certificate. While I was in school those eight months, I did notice some stiffness and swollen knees. I went to my primary doctor, concerned about my knees and he would say, “They are swollen because you walk too much.” (Bad, huh?)
In 2008, I started working. Four months later while I was at work, I noticed more joints swollen and I was really tired I became dizzy at work. After that, I went back to my primary doctor and he did tests and said that I have RA.
I only had swollen knees at that time and morning stiffness, my rheumy said I lost a lot of joint movement. I can’t straighten my arm; I can’t move both wrists up and down; I have TMJ. He also said I might have SLE (Lupus), but my blood test came back negative. I do get rashes all over my body at times especially around the sun. So he put me on Prednisone, Sulfa, omeprazole, MTX, folic acid, and Plaquenil. I’m still on this medication.
I had to switch doctors and this one put me on Enbrel, too. Since I turned 21, I don’t have any kind of medical insurance. But I applied for SSI and I finally got approved. Right now my RA is active – every joint is swollen and my hips hurt also so that I’m limping. This is my story.
This is Tonya’s onset of Rheumatoid Arthritis story, in her own words.
I was diagnosed with RA on Aug 4, 2010. One day before my 32nd birthday. But before I go into what has happened since then, let me explain what happened leading up to that day.
I have always been an athlete –ALWAYS. I ran track in high school and college, basketball and soccer in high school. I started playing soccer again when I was 21, AND I LOVED IT. When I was 22, my left forearm swelled for no apparent reason. It was painful to touch, red, and literally looked like a football. When I went to the doctor, they couldn’t find anything wrong with me or so they said. But they decided to do a bone density scan on me. My bones came back as a 57 year old woman –at the age of 22. They told me to take calcium and sent me on my way. They did not check me for anything else. That was it. That was my visit to the doctor.
So, the swelling eventually went away and I sucked it up –the pain that is. Then it happened again, this time in my knee. I went to a new doctor. I was thinking he was an internal doctor, he would do something different. He was what I call a “door knob” doctor… You know the kind… They have their hand on the door knob the whole time they talk to you. Yeah, that was him. He put me on Vioxx. And honestly, it worked for the pain. Then they took it off the market due to heart and stroke issues. So I was left to “suck it up” because I had to be a hypochondriac… or at least I thought. I was playing soccer 2-3 times a week. My crawling up the steps after a game had to be because I was out of shape or something, right? So, I continued to pop Ibuprofen and Tylenol. My husband at the time was such a trooper. He loved going to movies, and my knees would swell twice the size just sitting there for those two hours. He got to the point where he would get me those self adhesive knee warmers to wear just for the movie. I was in so much pain that I didn’t want to go anymore. Through the years, I continued to crawl up the steps and soak in the tub after a game. And I accepted it because maybe i was a hypochondriac, or just out of shape.
By the time I was 31, then the exhaustion (fatigue) came and symptoms worsened. I’m not sure if the exhaustion got worse or I just became more in tune with my body’s needs, but boy did it hit me hard. I got a new family doctor. This family doctor is AMAZING. He actually listens to me, sits down (no door knob doctor here) and we talk. I’ve always been afraid to tell my doctors how I feel because they never listened to me before; they were so worried about getting to the next patient, instead of treating me. My doctor now listens to me. So when I started to tell him all of my symptoms, he was genuinely concerned. My fatigue had been going on for a while now, my cholesterol and triglycerides were (and still are) out of whack, I was in a lot of pain (knee, ankles) and I wasn’t healing very fast. And I was always sick (bronchitis with asthmatic symptoms). I sang my daughter a song every night, there were times when I couldn’t sing because I was so sick. I cried myself to sleep those nights along with other nights from pain.
After about 6 months of being on and off depression medication, fatigue worsening and a knee surgery. My doctor was growing concerned. From about May of 2010 through my diagnosis in August, we did about 6 rounds of bloodwork and different types of testing on me to get to the bottom of my issues. My worse days were in July, 2010. I was at my lowest point when I had to go down our steps on my butt. Literally, on my butt. I couldn’t walk. I felt so helpless and LAME. Who has ever heard of a 31 year old, active woman not able to walk down steps??!! I couldn’t go up either. I had to pull myself up or go up on my knees. Mind you, I was still trying to make a comeback to soccer after I had my knee surgery in June 09, and after a very bad ankle injury in January 2010 (all my tendons were ripped). And I still was not healed. But darn it, I love soccer. It is my outlet. And I want to play so bad. I tried to play a couple of games but it hurt to run so much.
This is when my doctor finally called me in and said to me “I think you have Rheumatoid Arthritis. I’m not a specialist in RA so I’m going to send you a local RA Dr to do the diagnosis” Talk about scary. I had to wait 2 weeks for that appointment, all the meanwhile, looking RA up online. Basically saying to myself “Yeah, this is it. Finally an answer.” In between the two doctor’s visits, my family doctor prescribed me prednisone 15 mgs a day. THE PAIN WENT AWAY. I WAS IN HEAVEN. I actually remember running up the steps to the back porch and being thrilled that I could do that with NO PAIN!!
Aug 4, 2010
I was nervous to go to this appointment. I walk in to the Arthritis Clinic and I’m the youngest by 30 years. I say to myself “This can’t be it? Am I in the right place?” When I finally meet the doctor, she examines me, looks over my paperwork and says “Yes Tonya. You have Rheumatoid Arthritis. Your bloodwork is testing a low positive but still positive. We will need to start you methotrexate and 5mgs of prednisone.”
If you know me, then you know I’m the “research queen”. When I researched methotrexate, I literally sobbed. The side effects of this drug were so scary. I cried when I took my first dose of methotrexate and it made me sick. I threw up all night. I called the doctor the next day and asked for something else. Oh, and the prednisone stopped working. Five mgs was not enough. I had to increase it back to 15mg a day. The RA doctor prescribed Plaquenil. I tried it for about 2 months. It made me exhausted. We cut the dose back, not tired anymore but then I couldn’t move my right wrist. That was an RA problem. We had to go to the methotrexate again. This time it’s an injection that I give myself every Sunday morning. I HATE needles! And I hate this medication but the benefits outweigh the cons so I will take the medicine, and curse the whole time.
Now for my mental status through this whole ordeal… Scared of the unknown, scared that my life span is shortened because I have RA, depressed that I may end up crippled, depressed that I can’t keep up with my kids, depressed that I won’t be playing soccer anytime soon, mourning my healthy body, angry. Pissed that I can’t do anything about it. People say “stay positive” and I get that… hopefully that will come with time. But I was just diagnosed with a chronic disease. The word “arthritis” being attached to it is misleading and people look at me and say “it’s just arthritis.” I get so upset when people try to talk to me about what they THINK I have. Do some research, and then come talk to me. As you can tell, this is the anger coming out about this diagnosis. I’m not happy about it. I’m scared. We are taking the kids to Disney in March and I’m afraid I won’t be able to keep up. Will we need to get me a wheelchair? John tried to make me feel better by saying “yeah but then we’ll get moved up to the front of the line!” that is funny… and I know he is dealing with this too. I can’t imagine being told that he has a chronic disease that is going to shorten his life and will more than likely kill him. I can’t imagine. And I know my mental status is effecting him too. I’m not a happy camper right now, I’m moody (thanks prednisone), I’m gaining weight (again, thanks prednisone) and I’m scared.
This is Elizabeth’s onset of Rheumatoid Arthritis story, in her own words.
Gee – where to begin? Most of my life I’ve had a fatigue problem, and occasional migratory joint pain for no reason. Then, when I was 21 and in nursing school, my Momma developed sudden onset of Rheumatoid Arthritis that just went through her body like wildfire. She was on disability within 2 years. I continued to have sudden fatigue problems and occasional migratory joint pains – which were getting worse, slowly. Mom died at age 59 when I was 34. She put up a great fight for the time (60’s – 70’s), but she had the mutilans-type of RA and the meds of that time just couldn’t handle it.
During this time, my ex-husband left me and we divorced. I moved, and shortly married again (to an old friend). Within 6 months of Momma’s death, I suddenly had very swollen and very sore feet. I couldn’t wear my wonderful spike heels anymore! Went to an orthopedist, and was told I was developing “some arthritis” and was put on the NSAIDS of the day, Butazoladine and Indocin. They helped some, but the effects would wear off after a while and I’d have to go on a different one. Went to my Momma’s rheumatologist. This strong, brilliant man wept and said he could not take care of me – he didn’t want to see what happened to Momma happen to me!
So I went to just an internist. All my labs were negative – this was in the 80’s – so I “didn’t have RA, just probably Palindromic arthritis – whatever that was. There was no internet to search, and I didn’t have time to hit the medical library. Meanwhile, my forearms and wrists started hurting, but the doc said it was from carrying a heavy briefcase and moving heavy displays around. Into my 40’s now and still having migratory joint pains and increasing fatigue. Now I was teaching at a university. Had to lecture students sitting on a stool, and had to sit in the nursing station, monitoring the students through the other nurses and the video cams. Into my early 50’s. Getting my PhD. Every muscle and joint in my body ached, but I could function, barely. I – was – so – tired! And my feet hurt more and more. So did my forearms and wrists – but from carrying heavy bookbag and hauling library books all over the place. Oh, yes, and all the typing I was doing on the word processor for my dissertation. All I had to do was rest for a while, and I’d be FINE! Take these NSAIDS and call me in the morning. My stomach rebelled, and I had to stop the NSAIDS and go on Carafate.
And here is where it gets dicey. “You have some fibromyalgia. Nope, no meds for it. No cures. No treatment. Use hot packs, try aspirin and Tylenol.” Second doc (one of my favorites – really) “you probably have sero-negative Rheumatoid Arthritis, but I don’t want to put that in your record yet. Can’t use RA treatments on you without an RA diagnosis. Try Ibuprophen, and here is a prescription for a prednisone taper. Let me know how it works.” So I tried it. But it didn’t really work the way it was supposed to work. I felt great the first 3 days, then all the pain and fatigue came back. Rock and roll through the PhD, getting more and more fatigued and more sore all the time. Made it through graduation ceremony. At that point I had to take 6 months off to rest and try to catch up on sleep. Got a sweetheart of a job – great pay, great benefits. Required me to be at work at 6:00am to get computers in 22 ORs ready for the day, replace them with spares as needed (even on portable stands those things are heavy), research the inventory usage, develop graphs and reports for each month’s surgeries. Right up my alley. Except, my feet, ankles, and wrists hurt and my muscles screamed. Fatigue was back with a vengeance. Went to rheumatologist. “Fibromyalgia. RA tests are negative. Your joints aren’t really tender enough to be RA. You probably have some osteoarthritis going on.” So I had to quit that job.
Finally, 27 years after my first symptoms started, my right knee started going out on me and it HURT when I put weight on that leg. Went to new Internist. He ran a rheumatoid panel and got an MRI of the knee. Guess what? High Sed rate, super high CRP, high Rheumatoid factor! Off to rheumatologist who put me on Plaquenil. When things didn’t settle down within 6 months, he added MTX. In the 5 years since then, the MTX dose has been increased 3 times, and most recently been shifted to injectable MTX. Still on Plaquenil. Also taking Folic Acid and Leucovorin. I love my rheum. He tells it like it is, and really knows how to assess my joints without excessive pain. He considers fibromyalgia to be separate from the RA, but seems to be coming around to thinking it’s all RA – at least in me. So, at 68 I have a solid diagnosis and a solid therapeutic regimen. Just wish it could have snapped into place sooner so I could have kept that job and worked it into that nursing computer position! I’m still battling the fatigue big time. Some days, I think that’s the worst part of it. Then the pain hits again, and I don’t think that, I think the pain is the worst.
My husband used to teach ballroom dancing. When we waltzed, I felt like a princess. I would give anything to waltz with him again! Or rhumba. Or foxtrot. Or swing. The old classic dances. So much I will never do again – deliver a baby, teach student nurses, research perinatal statistics and high risk conditions, assess babies for neurological conditions, give prenatal care to women (I was once a nurse-midwife). But all that has to be behind me. I’m too old and too crippled to start another career. And some days I feel so useless! But then I jerk myself up, and hit the internet to find out interesting pieces of information for myself, or for my daughter, or for my husband, or my sons, and now some of the grandkids need me to help them with their research. Even on bad days, I can sit at the computer and do a little typing or hold and click the mouse (I have a very responsive mouse). So maybe I’m not totally useless.
My husband loves me. He cooks for me, he cleans house, he renovated the kitchen so I can sit out there with him while he cooks and keep him company. He has set up a flat-screen on an articulating arm by my recliner, and hooked my laptop to it. I use the wireless keyboard and wireless mouse he got for me. So I can still do my research and leisure surfing on the web even on my worst days. I am so blessed!