Maggie’s Rheumatoid Arthritis story
Dee’s Rheumatoid Arthritis story
Kim M.’s Rheumatoid Arthritis story
Christina’s Rheumatoid Arthritis story
This is Maggie’s Rheumatoid Arthritis story, in her own words.
My name is Maggie and I’m only 32 years old. I feel a lot younger, at least I used to.
In January of 2010, I started waking up with my right hand swollen almost every morning. I shrugged it off as a stress related symptom since I was going through a devastating divorce process. I had made the very hard decision to file for divorce in October and actually filed in January. It was one of the hardest things I have ever experienced. I was emotionally and physically exhausted but had to keep pulling through for my daughter. I was a stay at home mom for 6 years and had just started working in October of 2009. I had a LOT of changes that I was going through but nothing could have prepared me for the news I was going to receive on top of everything else I had to worry about. Luckily, I have put the divorce on hold after seeing that my husband has taken drastic measures to try to reconcile.
After a few weeks of waking up with my right had swelling, I called my doctor to get checked out. I didn’t have any pain whatsoever so I was not too concerned but concerned enough to know that something was up. My doctor checked my hands and asked me if I had any joints that hurt and I honestly answered “no.” Shortly thereafter while lab work was being done, I would wake up with my left pinky completely numb and feeling a tingle for hours. I started getting dizzy spells that I couldn’t fight or explain. I can’t tell you how many times I didn’t go to the doctor because I felt that I would be looked at as a hypochondriac… not that anything is wrong with being extra cautious with your body, but I didn’t want to be viewed as weak or whiny. Ever since I gave natural birth to my daughter, I felt this new sense of mental power… the feeling that I can take anything that comes my way…how foolish huh?
Well, my doctor diagnosed me with carpel tunnel syndrome and told me that I just had to be careful with my arm because my ulnar nerve was being aggravated… okay, now I was just plain aggravated.
Okay, next came the lab work. I was at work one day and was anxious to get my lab results so luckily, it was my doctor’s office calling me. I escaped for a couple minutes to take the phone call and the nurse told me that all of my lab tests came out very good…EXCEPT…. my RA blood work. I had never heard of Rheumatoid Arthritis before so I was like, “huh”? She explained to me that I tested positive for Rheumatoid Arthritis! Hmmm… I didn’t really believe it and took it as a mistake. I said I wanted another test. Sure enough, I took another test AND another… ALL POSITIVE! You see I wasn’t in any pain so I figured this would be a piece of cake of a “disease” to have. Boy was I mistaken.
Well, I was referred to a Rheumatologist who I love so much and she explained to me that she wanted to do some x-rays on me to determine if I had any affected joints. I have had a bunion on my right foot that always hurt very much but it was a bunion, it’s what happens right? Of course, I was limited to closed shoes because I was very embarrassed (still am) by my feet. The pain I’ve always felt on my foot was just “normal” for me and I just dealt with it.
After getting the x-rays, I sat at my dr.’s office to discuss the results. She said that the RA had already affected my feet and that the pain was a result of the Rheumatoid Arthritis as well. My doctor convinced me to be on Methotrexate me after explaining that if this is caught early enough, I may be able to be less affected during medication. I did not take the Methotrexate consistently… a BIG MISTAKE!!!
My REAL pain began in June!!! My daughter and I went to visit my girlfriend in Texas and we were so excited! We were only there from Friday through Sunday so we didn’t have that much time but enough to visit and make it good! I remember the first day we got there my friend was not feeling very good, so we helped her with the kids until she felt better. That night…something horrible happened!!! My left hand started hurting really, really bad! I thought I had broken it only 3 hours after the pain started. I was SO confused… I was wondering what I had done that might have caused it to break or fracture. It was bed time so I was ready to fall asleep, except the pain was so painful; all I could do is pray that I’d be okay by morning. I tried to pull the cover over me and I nearly burst into tears.
I woke up the next morning with the pain worse which I didn’t think was possible. I was so embarrassed when I had to tell my friend that I think I had to see a doctor. She was a dear friend and helped me find an immediate care center so I went anxiously to get some answers. I had an x-ray taken and when the doctor went in the room to examine my hand, he barely put his finger on top of my hand and like a little baby, I squealed!!! It was kind of funny but not at the same time. My daughter thought he had really hurt me and started crying….poor thing! When he saw the x-ray, he said there were no fractures or breaks. He knew that I had been diagnosed with Rheumatoid Arthritis a few months back and well, he said I was having a flare-up… a WHAT? I had never heard that term before. He said that the change of weather probably caused my joints to swell up and he suggested a cortisone shot! Whoa there… I thought… how do I know that it’s what it is? I was so confused. I left with NO medication, but relieved that I didn’t have a broken wrist. I took the pain but luckily 24 hours later, it was back to normal…as if nothing had happened…how bizarre but hey, I’ll take the relief. Unfortunately, when I went back home, my right hand had copied its left partner. This time, I had a splint and used it. The pain was not as bad since I reduced mobility.
Then it all started…the pain, the flare-ups, the frustration, the struggle with medication. I then had a flare-up to my left and right thumb and shortly there-after to my salivary glands. When I started feeling the pain to my left side of the neck, I thought I was just getting a sore throat out of nowhere because it started becoming painful to swallow…the pain got sooo bad, I think I shed a tear. I called my doctor on call and asked him why it was so painful…but he did not think it was the RA. Only one day after getting better, my right gland was swollen and made it almost impossible to swallow without a tear strolling down my cheek. From then on, I have had flare ups on my shoulders, my hips, my wrists several times, fingers many times, feet and so on. When I recently had about 7 flare-ups in one week, my RA doctor put me on Prednisone. I felt a lot better and was able to walk without so much pain, but eventually I was off the Prednisone…only after gaining 6 pounds. I have been struggling with the pains on both feet which leave me completely unable to step down without grunting or making fists at the pain. I feel like I’m walking on rocks some mornings but I still get the ability to get up, get my daughter ready (with my husband’s help) and make it to work. I work at a Cancer Center so I try to use my compassion towards those who have it much worse than me. My fingers constantly hurt now and my right hand is usually swollen in the mornings.
My RA Dr. prescribed me more Prednisone since I refuse to add weekly injections such as Humira to my medication list. I have not been able to take it and just hope for a miracle. My feet hurt so bad but I try to remain strong and hopeful. My knees are becoming affected very much so I try to sit and rest as much as I can. The frustration has a life of its own sometimes but I must live with it and treat it as a life-long partner that will compromise with me. My prayers are constant.
I’m not sure what comes next, but I’m afraid…very afraid of what I will look like in 10 years. I am young and eager to do so many things, especially with my daughter. Thank you for allowing me to share my story and hope that this will help others feel less alone and more able to tell their story. My story may not be as bad as other RA patients, but it’s MY story and it matters.
This is Dee’s Rheumatoid Arthritis story in her own words.
When people find out I have RA, they always ask, “How long have you had it?” The truth is I have no idea. When I try to remember when the pain started for me, it’s all a blur. When I was about 9 years old I would get horrible headaches. My parents were always fighting and always separated and I remember hearing my grandmother say that’s all it was. My cousins would get mad at me and tell me I was too young for headaches. I didn’t want to be a problem for my mom, so I tried not to tell anyone when my head hurt. I guess they went away. I honestly can’t remember.
Then in 7th grade they came back, full force. I had CT scans done and my eyes checked but they found no cause and again, they eventually went away. I ran cross country and my feet would feel like they were being ripped in two. My coaches told me I needed to suck it up, so I did. In high school I worked as a grocery store clerk. My back, feet, and knees hurt all the time. I just thought it was from working, but my dad did tease me that I was too young. He hurt every day of his life and still worked, Yada, yada, yada. So I just took Advil and moved on.
I still had headaches a lot too. They were always on one or the other side of my head and neck. My dad had migraines, so that is what mine must be. Our old country doc put me on birth control, thinking if he controlled my hormones that would help. I got pneumonia my senior year of high school and when it was over I was left with a wheezy cough that wouldn’t go away. The doc called it coughing asthma and gave me an inhaler. Right out of high school, I joined the Air Force. By this time people thought of me as weak and a complainer and many were not afraid to tell me that I was not cut out for it. I had always excelled at academics and extracurricular stuff and school and I was determined that I could do this too.
Two weeks into basic my feet hurt so bad I cried myself to sleep every night. I had what I called “little bony things” sticking out of the tops of my feet and out of the back of my heels. Four weeks in I had to get out of bed on the sides of my feet. I hid it as best as I could. At one point a sergeant saw me and tried to send me to the clinic, but I knew they would send me home and I didn’t want to be a failure so I lied and told her I was fine. She didn’t believe me but she let me skip a lot of marching drills and found me other crappy jobs to do instead. I’ll never know why she did that but it helped me make it through the entire training. At the end, it was all I could do not to limp. I would use anything I could find to pad the bony sections on my heels. I figured the pain was from my flat feet. I got a better pair of combat boots, basic was over, life was easier and my feet felt better. The “bony things” never went away. For personal reasons I got out of the Air Force and went back to civilian life after only one year.
My neck and headaches got really bad and the old country doc put me on a beta blocker to try and stop them. Also, while waiting tables I had shoulder pain that he diagnosed as bursitis. I was treated with NSAIDS, so when it came back in other shoulders and my knees I just took more Advil. Along this same time, I would wake up in the middle of the night and not be able to straighten my elbow until I could get it to pop and then it would throb and hurt for days. Again… more Advil.
In August of 1996 I got married and started nursing school within days of each other. I was plagued with aches and pains, but I was under stress so that was understandable, right? Then, I got pregnant with my daughter and things were better. After she was born, I got pneumonia again followed by the never ending cough. I always had headaches. My feet hurt terribly but I had a new colicky baby, I worked in a stressful area as a new nurse and my husband was working constantly. Who wouldn’t hurt?
We moved to Austin, Tx. in January, 1999 so my husband could go back to school. He was in a difficult degree program and not available much. I worked every extra hour I could to support us and took the lead in raising our daughter. I got pneumonia again, followed by some unknown virus. I had temps of over 104 and all of my joints hurt. I couldn’t straighten my legs. My husband was working for the summer out of town, my daughter was with her grandparents and I was alone. I knew it was bad because my doctor called me every day to make sure I would answer the phone. He knew I couldn’t afford a hospital stay and honestly I don’t think he had a clue what to do with me anyway. My knees started to hurt more and more after that. The right one had a crackle in it worse than the left and would go out on me while I walked. I had several steroid injections and tried different prescription NSAIDS but nothing helped. My orthopedic doc decided to do surgery. He cleaned it up and did a lateral release. He said he wasn’t sure what was wrong with it but thought that would help.
My headaches were awful. I would lose vision in one eye or the other, my face would get hot, speech would slur. MRIs, blood tests and a lumbar puncture found no reason for any of this. My husband graduated so we moved to a new town; I got pregnant and a new life began. Things were better. I breast fed my son for two years. I thought my new less stressful life was the cure I needed. Then for my husband’s job we moved again. I was fine until after I had surgery for a gyn problem and then it all started all over again. This time a pain doc I worked with said the headaches were cluster headaches. He treated me with massive NSAIDS and hydrocodone. He wanted a neck MRI and x-ray but I felt better and never went. Sometimes I got back and leg pain followed by feeling like something hot was being poured down my leg. My daughter was very ill at this time though, so my focus was on her. My husband’s parents were both diagnosed with cancer and my aches and pains did not matter. After a year we lost his dad and decided to take on a new move again. This time to Tulsa.
January of 2009. I was almost 38 but I felt much older. I was tired and achy all the time, but it’s much colder here than what I’m used to and I just figured that is what it was. But then spring came, and instead of feeling better, I felt worse. My sister thought it was because I wasn’t active enough. I didn’t really know anyone here and I slept a lot. Then, it got where going up the stairs to wake the kids in the morning was brutal and I kept getting a wheezy bronchitis that lasted weeks. I broke down in tears at my doctor’s office. I really felt like all of my pain was in my head. After all, no blood work, no x-rays, no MRIs had ever found a thing wrong with me. I’m just what those people always thought of me in high school…. a complainer! My doctor was kind and compassionate. She pressed on a few places and told me I had fibromyalgia. I started on Lyrica. I felt so much better just knowing it wasn’t in my head and for a while I thought the Lyrica was my answered prayer. I decided to go back to work. But I guess I had had more damage over the years done to me that I knew. Pushing stretchers, working in the cold ORs, being on my feet proved to be too much. I couldn’t even squeeze the shampoo bottle in the morning. Defeated, I quit my job and showed up at my doctor’s office in tears again. This time she decided I needed to go to a Rheumatologist. My sed rate had always been high. She had never told me this, but now it was near 50. I had been given six steroid shots to try and relieve my endless bronchitis. I went to the Rheumatologist but my Rheumatoid factor was negative. He changed me from Celebrex 200mg twice a day, which I had been taking for two years, to something else. I don’t even remember what. I just remember that I was afraid. The Celebrex was the only thing that ever touched my pain. Sure enough my pain was worse. He sent me to a pulmonologist, who x-rayed my lungs and basically laughed at me, telling me nothing was wrong with me. My mom had recently been diagnosed with Psoriatic Arthritis, so he had a dry skin patch biopsied but it was negative for psoriasis. Then in October 2009 I saw a different Rheumy in the same office because mine was busy. She x-rayed my hands and feet and found osteopenia. She gave me a diagnosis of RA and has been treating me ever since. I’ve been on methotrexate alone, then added Humira and I’m now trying Remicade. Sometimes I still wonder if it’s all in my head. It seems like as soon as she called it RA it has just gotten worse and worse. I know this has been a very long story. I apologize for that. It seemed like I couldn’t just tell part of it. I don’t know where this journey began. I only wish it would end.
This is Kim M.’s Rheumatoid Arthritis story, in her own words.
My name is Kim and I am 45 years old. Here is my story. Almost 20 years ago, after the birth of my 3rd son, I came down with what we thought was the flu. I was down for a month, which was very difficult with a newborn, a one year old, and a four year old. I lost a significant amount of weight and one morning I woke up with all my joints flared, locked, and stiff! My husband had to carry me to the bathroom, washed me up, and carried me straight to the ER.
Fortunately, my doctor’s daughter was suspicious of either Rheumatoid Arthritis or Fibromyalgia and put me on prednisone immediately and calmed my crazy body (or shook it up like prednisone does) and started treating it aggressively with some pretty strong NSAIDS. Just until we knew what the diagnosis was. I spent the next three months with flares literally appearing all over my body and it was like my joints were taking turns being swollen, red, and painful – even my jaw! It sucked big time!!!!! Finally, after 4 months, I received the diagnosis – Rheumatoid Arthritis. My Grandmother was also a sufferer. I have spent 14 years on Methotrexate and Mobic. And about five years ago, I was able to finally get approved by both my doctor and my insurance for Enbrel and it entered my life!!!! LOVED IT!!! I was finally able to be and feel “normal.”
This past spring, I was cut from my job AND my insurance. (I was the insurance carrier at our house.) I’m currently not insured and not on Enbrel since it costs around $2,000 a month ~OUCH!!! I am feeling the full effects of my disease. I am currently saving my money to see my Rheumatologist. My RA doc is GREAT!!!! He is up on all the latest and waits to see what the long term effects will be. I will be discussing what my medication options are because of medication cost until I get back on insurance and hopefully back on Enbrel. I currently use ibuprofen in the a.m. and try to keep moving all day long. I do yoga, stretching, weightlifting, and either biking or walking. I have also discovered kickboxing and a wonderful friend who attends with me and encourages me the days when I have difficulty with stiffness and movement!!!! After class, I am able to move more freely (never without pain) and feel better. I can only go 3 times a week, if I go more fatigue gets me! That darn fatigue!!!! I try to follow my doctor’s advice “motion is lotion” and stay as active as I can! I am currently researching diets regarding “nightshade foods” which was foods that increase inflammation….
I also have a wonderful husband (we have been married 25 yrs) who is very supportive as well as my three sons and family. A support system can be encouraging when you are having those “I hate my body” days. I am working hard to empower myself with knowledge…it seems with all the information out there, there is always something new to read…I feel overwhelmed!
Thanks again Kelly for all you do! God bless.
You can read more from Kim on her own blog.
This is Christina’s onset of Rheumatoid Arthritis story, in her own words.
I am both an RA patient and a physician. My medical background gives me no advantage over this horrid disease. In fact, because of my role as a healer I think I overlooked some of its signs and symptoms for years. I’ve had pain in my hands and feet for years that would come and go often associated with a fever. I usually attributed it to a flu-like illness and as the symptoms would abate after about a week or two, I was never overly concerned.
I did once check a Rheumatoid factor, ANA, and sed rate on myself that was negative after a more severe bout with these symptoms. It was not until august of 2009 that I was literally knocked off my @%$. For one month I suffered pain that there are no words for again in my hands and feet along with a fever and a new symptom of a disablingly dry mouth to the point where I couldn’t swallow or hardly speak. I new I was in deep doodoo and called a rheumatologist that I frequently referred to. She initially thought it was Sjogren’s but tested for everything under the sun. All of my blood work was normal except for elevated liver enzymes which seems to happen whenever I don’t feel well.
An MRI of the ankle joint was conclusive for Rheumatoid Arthritis. I’ve been started on Enbrel methotrexate and was on prednisone about 3 months. At times I feel pretty good. The last few months I’ve felt horrible and have experienced firsthand the frustration of all pts that are told they are just fine…. I’m not dammit. I know my body and I would love to see the look of horror on a doctor’s face who said that to me after spending just a few minutes in my body… cruel I know. See RA has robbed me of so much and I mourn the woman I used to be and people still assume that I am. I still hope for a combination of the best of that woman with the heart that I have now. Thanks to everybody for sharing.