Aubrey’s Rheumatoid Arthritis story
Julie’s Rheumatoid Arthritis story
Francesca’s Rheumatoid Arthritis story
Shanna’s Rheumatoid Arthritis story
The following is Aubrey’s Rheumatoid Arthritis Story, in her own words.
My name is Aubrey, and this is my onset story.
My youngest child, “A3”, was born in February 2008. His sisters, “A1” and “A2” were 2.5. He was an incredibly easy child, or maybe it just seemed that way because all I had to compare his newborn stage to was the horrible twin newborn stage. Like his sisters, A3 was breastfed from the beginning. He had a sensitivity to milk proteins, so I had to severely restrict my diet, but I knew it would be worth it. I knew he was my last child and I was determined to keep breastfeeding until 18 months, or until he weaned himself. I had to sit on the floor in the supply closet at work three times a day to pump, and that’s when I first started having pain. Sitting “criss-cross applesauce” (as my girls would say) on the floor, I noticed that the backs of my knees were really bothering me. My legs would fall asleep after sitting there for just a couple of minutes and the backs of my knees would hurt for a long while after I was done. I ignored it at first, but over a couple of weeks, it was starting to get worrisome, so I called my doctor. This was in July. A3 was 5 months old, the twins were turning 3, and I had just turned 28. My doctor examined me and said he thought it was “baker’s cysts” but was perplexed by the fact that both knees were affected. He prescribed Naprosyn and told me to come back if it didn’t get better. A quick google search told me that it was most likely NOT baker’s cysts, since there were no cysts to be felt. And I couldn’t take the Naprosyn as often as needed because of the fact that I was breastfeeding. So I let it go for another couple of months. In September, the pain was getting worse, so I called a different doctor in the same practice to get a second opinion. She did blood work, all of which came back normal, and said that she simply didn’t know what was going on. She prescribed more Naprosyn and said that if it got worse, she would refer me to a rheumatologist. I knew what that implied and, after seeing what RA had done to my great-aunt and a couple of cousins (none of which are related to me by blood!), I refused to even let my mind go there. So I lived with it for another couple of months.
We went to Tennessee to visit my family for Thanksgiving, like we always do. I should say that during all of this, my grandmother was diagnosed with terminal lung cancer, my parents were unemployed, and my youngest sister was going through a divorce. So I was a little stressed and the last thing I wanted to worry about was me, what with worrying about everyone else in my family. While we were there, I rapidly started getting stiffness throughout my body and pain in various joints. My ankles and elbows started up. On the trip back, I was in tears for much of the drive because literally every joint in my body was in pain. My fingers, toes, shoulders, even my jaw joined in on the fun. I kind of knew at that point what was going on, but kept telling myself “It would have shown up in the bloodwork that the doctor did.” I called her office the next day and they called me back with an appointment time for a rheumatologist. In January! I knew there was no way I could continue until then without answers and treatment. So I got the yellow pages and called every rheumatologist in the area. I found one. They said that if they got the referral paperwork from my primary care doctor, they could see me the next week. So off I went. They did a load of bloodwork and X-rays of every joint. When I went back for my results, on December 18, 2008, I was diagnosed with sero-negative rheumatoid arthritis. She told me that I had osteoarthritis in all of my joints and she saw what looked like erosion points on my left hip. (I’ve had problems with my hips since high school…I always attributed it to cheerleading and a bad back.) So she ordered an MRI. I made it clear to her that it was important to me to continue breastfeeding my son and she said that, assuming my hip MRI would come back clean, I could put off treatment until his first birthday, when I felt somewhat comfortable about weaning. It did not. There were already erosion points on both hips and the pain was getting so bad that I couldn’t pick A3 up out of his crib. So I had to decide if continuing to provide breastmilk for him was more important than my health and being able to simply hold him. Looking at it now, with a rational mind, I can see that the choice is obvious. But I really struggled with it. I didn’t WANT to wean him. He was only 10 months old and HE didn’t want to wean. It was so freaking unfair that I had to do that to my baby boy because my immune system suddenly decided it didn’t like my joints anymore. So after A LOT of tears from both of us, I weaned him and started methotrexate and prednisone, neither of which treated my body very well…
This Julie’s Rheumatoid Arthritis story, in her own words.
My name is Julie and I am sending you this from your fellow sufferers from across the pond..
Although our health programmes are totally different to yours, the good old NHS, is still so much in the dark to RA as yours.
I am 43, and have only been diagnosed for 1 year, I am on steroids and methotrexate,and cant take any painkillers as I seem to be allergic to them..
However,, It has taken me years to get to this stage, where I can put a name to my beast.. I have been back and forth to my doctors for years with various unnatural “aches and Pains” which have always been put down to “life style”..
I have always had an active job, in fact I have run my own gardening business for the last 4 years..however I have had a lot of stress in my life,and when I really sit back and think of it, it has always been at these “stress highs” that my body has decided to tell me about it..
I have had major bodily trauma, when I was born I was so ill I was not supposed to live the night, from that point my mother was obviously over protective..
I became highly allergic to asprin, and had very bad cases of something you described about patches of dying skin which started when I was 9 yrs.
The first joint problems that I noticed were after I had my son at the age of 22.
I had started part time as a florist which took a lot of standing, but it was my thumbs that took the first assault. From there my hands and wrists joined the “party”.. it would then move to my elbows, then to my shoulders, and then to my neck.. the whole episode would last about 4 weeks.. I would then start to get pain in my hips..
I was told “its your job”.. I had x rays, testas for carpal tunnel syndrome,physio etc etc etc, and nothing worked.. It was at this stage \i stupidly told one Dr, how tierd I was.. he basically laughed in my face and said if only I had a pound for everytime someone said that to me.. since that I was so scared of going back, because I felt that I was wasting their time..
Things did settle down for a few years, the pain was still there, but again I just put it down to my job..
However 2 years ago my hips and back went into such a spasm I actually had to take time off work.. I had not felt pain like it.. I was given painkillers, and reacted badly from them.. so i just got on with it.. from this point, the pain cycle went into overdrive.. I had pain in my ankles hips wrists fingers shoulders and worst of all my jaw.. I also started to loose function of my hands.. \i found sometimes I couldnt open my fingers.. again more physio and “its your job”..
One day I woke up and my knee felt stiff.. I thought I had slept in an odd position.. I went to work and within 3 hours I could barely walk.. I have no idea how i managed to drive home but I know I was in tears. I got in the bath and realised it was a mistake cos I didnt know how I was going to get out again..
I phoned my husband and begged him to come home. he did and took one look at me and took me straight to A&E.
Again it was, “how have you injured it”. and I felt so much that I was wasting their time.. They did xrays and blood tests, and the Dr came back and said cant find anything wrong, but have you had an illness lately..?? I was told my white blood cells were all wrong.. It was then she said, go and get a test for RA.. never really heard of it before, and after a long weekend of recouperation, I finally googled RA,I had nothing better to do as I couldnt walk..
Guess what BINGO.. I was reading every symptom etc.that I have had for years..
The first blood test came back positive, so my Dr put me on a referral list for a Rheumatologist.I had to wait 4 months to see him, but things seemed to be a little bit more positive, as i could see a little light at the end of the tunnel.
I was diagnosed last November and nearly kissed Dr D. I felt elated.. I am not a time waster, i am not a whinger, I actually have a name for the thing that is attacking my body, and now I can at least try and understand what is happening to me..
A year later, i am coping.. I dont have a very good Rheumy team but its better than nothing..At least I can get certain meds which others cant in our “postcode lottery” of drug treatment.. Still trying to work, but my life has been seriously affected..but the one thing that has come out of all this is that I am trying not to get too stressed out about things anymore..all i want is quality of life.. i dont get hung up about goods and chattels anymore..
All I wish for on a daily basis is a pain free day…
Love and hugs,
This is Francesca’s Rheumatoid Arthritis story, in her own words.
My onset story is still evolving since I was diagnosed within a very short period between the time I first complained (June of 2009). I am 34 years old and work as an independent contractor so I pay for my own medical insurance and have high deductibles (as does my husband) so I try to limit my visits to the doctor. My previous medical history included migraines that started at a very young age, smoker, an unexplained period of over active Thyroid in College, endometriosis and then 2 years ago I had a mixed bag of very odd symptoms that I initially thought could be a virus. They included frequent low grade fevers, chronic pain near my thyroid cartilage, burning red eyes, ear pain and extreme fatigue. I put up with this about 3 weeks and then went to my PCP who ran a blood test, looked down my throat and declared me fine. I was not happy but thought it might resolve. After another month I begged for imaging of the front of my neck and thyroid. Having had a past thyroid problem and a grandmother who had a mass on her thyroid I thought it likely the source of my symptoms and a logical place to look. I was denied and dismissed but told I could see an ENT. The ENT diagnosed me with anxiety because he could not find the source of my pain after a visual exam. I was angry and ashamed and switched PCP’s.
By the time I saw my new PCP this had been going on over 6 months and everyone around me was fed up with my complaints. I am extremely thin (not in my control) and I have always felt that my low weight lent to a perceived weakness on my part. My new PCP was great and agreed to a CT scan which showed a mass behind my left tonsil and what the radiologist thought were benign calcifications on my thyroid cartilage. I was really hung up on those calcifications and still am to this day because even after the mass and my tonsils were removed I suffer the same pain and symptoms. I went to an eye doctor who diagnosed me with dry eye shortly after I healed from the surgery but my PCP and the ENT who performed the surgery assured me the source of my pain was gone. I felt like I had to drop it before I would again be labeled with anxiety disorder by both my docs and family and friends and so I did.
Then this June while typing I suddenly developed what I thought was carpal tunnel in my index finger. It was limited the first day and mostly just incredibly inconvenient as I need my right hand to type and write at least a few hours a day. 2 days later I went to my PCP who sent me to an ortho who was confused and thought I had injured the finger despite my inability to recall how. They offered to do x-rays but I declined since I thought it was probably tendonitis or something silly. I really had just been hoping for a quick fix. I had no idea or no concern that it was anything remotely serious.
The next morning the pain I had in the 2 joints of the index finger had somehow migrated to 3 other fingers. By the end of that same day it was migrating into other joints all over as well. My right hand was visibly swollen. I never saw evidence of swelling in the other joints that were bothering me however. I could not bend the fingers they were so stiff and I was generally experiencing this to varying degrees in most of my joints with the exception of my hips. I had no idea what to tell people and it may seem hard to believe but virtually only 10 percent of the people I was interacting with those first bad days even noticed. My husband and I work together so he was covering for me as much as he could. I was unable to feed myself, drive, dress etc mostly due to the severity of my right hand.
I went back to the Ortho, they ran blood tests and 2 days later called me and told me my Rheumatoid Factor was very high and I had inflammation and had already scheduled me to see a rheumatologist a few days later. He diagnosed me definitively a few weeks later after more labs and xrays despite the fact that I had very little visible joint damage. I was put on Prednisone and Plaquenil. I loved the Prednisone which had me nearly back to normal in a matter of days. I told very few people since I was afraid of losing clients and for the most part you could not tell there was anything wrong particularly once I had the Prednisone. I also was not completely convinced since my symptoms would come and go and 6 months out I have yet to experience a flare as bad as the first. My knees and right foot chronically bother me and had been to a small degree for a few years, but not to the point where I have a visible limp (except for some mornings when I tend to have a tougher time). I slowly started telling some people and I HATE the reaction. I am, and have been consistently exhausted since I first started with the eye/ear/neck pain 2 years ago so I have this paranoia I am earning a reputation as a complainer. I am having a hard time getting as much done but can’t afford to do less. I recently started Methotrexate after a lot of convincing from my Rheumatologist and husband.
This morning I decided to post about my first experience with Methotrexate on my Facebook profile as a way of ‘’outing myself despite the fact that I use it for networking with clients as well as friends. I don’t like the reactions or non reactions I am getting. The last few months I keep hearing anecdotal stories about people who were ‘cured’ by a wide range of arbitrary and ‘natural’ supplements/drinks/herbs/ etc.. I have had people flat out tell me I don’t need medications and I am a ‘tool for the pharmaceutical companies’ which I can’t respond to in a short, articulate and unemotional manner. I would be thrilled if there were indeed such a cure, it would be tremendously helpful to my pocket book as well. What is really tough is being told that if I had a better attitude I might feel better and that positive thinking might just be enough in the opinion of some aquaintances who did NOT go to medical school but feel confident doling out their ‘prescriptions’.
In general I try not to think about it or discuss it with others as I just get depressed and frustrated. Its exhausting finding excuses for why I might have to cancel a social activity but when I do explain its even more exhausting to deal with the lack of understanding. Glad to have found this blog as I have been feeling rather isolated. I am curious to hear how people manage this with work. I have no option to slow down and I feel like I am barely hanging in. The tactic of pretending nothing is wrong is not working for me but talking about it so openly may not be a smart professional approach either.
This is Shanna’s Rheumatoid Arthritis Onset Story, in her own words.
My story happened very quickly: 3 months from the first symptom to a diagnosis and the start of treatment.
I gave birth to my second child, a girl, L, at the end of March 2009. I also have a five-year-old son. I had an incredibly healthy pregnancy and an easy delivery. Two weeks after L was born, I noticed that my feet felt a little stiff after I had been sitting. I tended to breastfeed on the sofa sitting cross-legged, so I assumed it was from sitting in a weird position too long. Then, I started having what I called “tweaks.” One or both shoulders would be painful, one or both wrists, one or both knees. It would usually only last a day or two and then resolve. I thought it was from carrying around the baby in her carseat; that I was moving the wrong way. I had my first child at 28, and was 32 when L was born, so I figured the four-year difference was just my “older” body getting used to hauling around a baby again.
At my six-week postpartum checkup with my midwife, I mentioned that I had been having some joint pain. She thought perhaps I was having difficulty with all the hormones leaving my body after the pregnancy, suggested I take a glucosamine/chondroitin supplement, and that I should be feeling pretty much normal by 12 weeks postpartum. I did some reading on the internet and found that some women do experience postpartum joint pain as the hormone relaxin gets back to normal levels. I would wake up each morning hoping that it was the day my hormones would normalize and I would feel better.
Then the pain went into my hands. It felt like every joint in my wrists and fingers was on fire. Meanwhile, my feet were so swollen that I could only wear flip-flops, and I had to shuffle when I walked because my feet wouldn’t bend. I could hardly get out of bed from the pain in my feet and I sobbed through diaper changes. I wasn’t able to snap my daughter’s onesies and picking her up was almost more than I could bear. It was excruciating to hold her when I breastfed her. I was exhausted beyond what I felt was normal newborn exhaustion. My knees hurt so badly that I dreaded having to use the bathroom, and some days I didn’t leave the house because it was too painful to drive my car, which has a manual transmission. I was taking as much ibuprofen as a I dared to while breastfeeding. I finally realized this was not a postpartum thing and made an appointment with my primary care doctor, whom I had actually never met. In the last fifteen years I have only been to the doctor for my annual pap smears and of course, for my two kids. I gave birth to both my kids without an epidural, and I consider myself to have a pretty high tolerance for pain. I knew this just wasn’t right. My doctor took down my history and drew blood. I came back a week later and he said my blood was elevated for rheumatoid factor. He then drew more blood for the anti-CCP test and told me he would have the results within the week. In the meantime, my husband was having to go into work an hour late because I was unable to get the kids up and ready by myself.
My doctor finally called me and said my anti-CCP also came back positive. On the day he called I hadn’t been able to bend the fingers on my right hand for a week. Thankfully, he was able to get me into a rheumatologist within a week. I realize now what a miracle that was! In anticipation of my first visit with my rheumatologist, I had made the agonizing decision to wean L from breastfeeding. While I was heartbroken to not be able to give her my abundant supply of healthy breastmilk, I was not a fit mother for her in the state I was in. The day after my first appointment, on July 2, I started methotrexate and prednisone. My rheumatologist went to bat for me with my insurance company and got them to approve Humira for me before their standard three-month trial on just methotrexate, and I started the Humira on August 3. I was able to stop taking the prednisone at the end of August and so far I am responding very well to the Humira.