Daisy’s Rheumatoid Arthritis story
Robin’s Rheumatoid Arthritis story
Terri’s Rheumatoid Arthritis story
Joanie’s Rheumatoid Arthritis story
This is Daisy’s onset of Rheumatoid Arthritis story, in her own words.
I was born on 18th November 1983, which means I recently turned 27. I live in Nairobi, Kenya. In 2006, I graduated from Uni with a Law Degree and was looking forward to the rest of my (exciting) life.
Growing up, I didn’t have major health challenges. I suffered terrible duodenitis when I was 11-12 but it was well managed and disappeared as I grew older. The only problem I remember constantly having was that I was always tired. I couldn’t stand for long and almost fainted many times. My mom and teachers thought I had a weight problem. My teachers said I was just fat and lazy! Sigh.
Back to 2006. In October of 2006, I started working at a fantastic law firm as an intern and joined the school of law. I felt so blessed and joyful. It was the best of times. A few months into my internship, in February of 2007, I started feeling unusually fatigued. I assumed I was working too hard. I really pushed myself as an intern and worked really long hours. In March of 2007, I started experiencing swelling and pain in my fingers and wrists. Before long, my fingers looked like sausages! Everyone assumed I had spent too much time on my computer typing up briefs and legal opinions. It made sense. When the pain became unbearable, I visited the hospital and saw a GP. He dismissed it and prescribed some paracetamol (Tylenol) which I took. It helped for about a week.
When the pain returned, it got worse and started spreading. It spread to my knees and my ankles. One day, I was in the library with my boss doing some research. I got up to pick a book from the shelf and immediately started screaming and sat down again. The pain was unbearable. Soon I had trouble walking. I couldn’t understand what was happening. After about three weeks, I couldn’t do simple things like comb my hair, brush my teeth, dress up in the morning or even type. I couldn’t raise my arms and I was constantly tired. Tired is an understatement.
One day my boss gently told me that his cousin had died of lupus and she had similar symptoms. I got very scared. I thought I was dying. I had put off seeing a doctor after the paracetamol incident, but that was the boost I needed. I decided to do something about it. I had heard of lupus and I was horrified.
I spoke to my cousin who told me not to see a GP. At this point I must digress a little and say that I am so glad in Kenya there are no waiting lists when it comes to setting up appointments with specialists. Having read most of the stories in here, I am so thankful that I was able to see a rheumatologist immediately. That by the way was a coincidence. My cousin told me that their family doctor was a rheumatologist and that she didn’t really know what that meant. The reason she wanted me to see him however was that “he is very smart and will figure out what’s up in a few minutes!” Neither of us knew that God was leading me to him because he was exactly the doctor I needed to see!
I had never had of Rheumatoid Arthritis at that point, and I didn’t know what sort of doctor a rheumatologist was. I do now, however. I saw the doctor towards the end of April 2007 and sure enough within minutes; he told me I had some form of arthritis. He ordered some blood tests and X-Rays to confirm RA and rule out lupus, which he suspected as well. I remember him asking me to get on the bed so that he could give me a jab.
Now you must understand I hate needles. And that’s putting it mildly. When I refused, he told me that if he didn’t do it, I would be wheeled out of my house on a wheelchair the next day. I dutifully obliged since at that point I was bordering on being totally paralysed. I could barely move.
The blood work confirmed RA and ruled out Lupus. The jab was a miracle!! When I woke up the next day, I felt better than I had in months! I realized that the symptoms had been there for a long time but I had ignored them. Subsequently, I have experienced Sjogren’s syndrome, chest problems, I have lost my voice, and the fatigue never really goes away. It’s like a bad smell that lingers! In the last one year I find it very difficult to drive in traffic or to drive long distances. I also get very stiff after sitting for more than thirty minutes. And of course there is that horrible morning stiffness.
There have been hurtful comments that I know are borne out of ignorance. There have been times I have wished some loved ones were more understanding and patient. But I have been lucky. I have good family and friends who try to understand and even when they don’t, they just try to be there. It’s work in progress. I worry about getting pregnant (I am not married yet) and my ability to look after a family with this illness but I draw encouragement from all the onset stories here.
I’ve been on prednisone, aceclofenac, methotrexate, leflunomide, folic acid, and calcium supplements since I was diagnosed. That’s 4 years this April. I have bad months and good months usually in equal measure. I hate (and love) methotrexate and her friends but when I don’t take them I feel so lousy so I’ll stick to taking them.
Last year I had horrible flares. My rheumy admitted me in May and administered a mix of solumedrol and MabThera (Rituxan). He told me it was the strongest treatment available. I was sick for weeks. I’m told its mild chemo. I pray for cancer patients everyday now. That was a horrible experience. But the flares did stop for many months. Lately, the flares have started again and he’s mentioned that we may have to perform a repeat dose in a few weeks.
I am thankful to God that I was diagnosed early and that He has faithfully supplied the (very expensive) drugs I need. My work as a practicing advocate is so demanding and draining but He gives me the grace and strength to get through each week! My life really is a miracle. His miracle.
This is Robin’s onset of Rheumatoid Arthritis story, in his own words.
My name is Robin. I just got diagnosed Friday.
Around Thanksgiving 2010, I started having just a random pain somewhere (one knee, the other knee, shoulder, feet – you get the idea) but it would invariably get to my hands, which hurt now as I type this. It went away after a few days (then), so I didn’t think much about it.
Then, it got my hands again a week or so later, so I start wondering “Ok, what did I eat? What was in common with the last time?” The best I could come up with was something with peanut oil in them. I’d had some Japanese food with peanut sauce the day of the first flare up with my hands and a PBJ on the next. So, I dismissed it as a developing peanut allergy and started looking around on the net about that, all the time RA and Gout seem to be the biggest hits with my symptoms. I was hoping taking my usual spring time allergy meds and Benadryl would make it go away (again, thinking food allergy), all the while avoiding things that touch peanuts. I have a new found sympathy with folks that have peanut and other food allergies, it’s difficult to avoid.
At some point after the New Year, it just hit a tipping point where things just hurt everywhere. It seemed like every part of my body that bent, twisted, or pivoted was on fire. A bit of an exaggeration in all reality, but it hurt everywhere. I start to doubt the idea of a food allergy, as all the Benadryl did was just make me sleepy and the pain wasn’t going away. I start leaning toward the gout & arthritis idea, and pick up some glucosamine the next time I was at Costco. I’m not so sure that worked either; the pain wasn’t going away.
So, in mid-January 2011, I’m talking with my mother about all the pain. She’s got arthritis pretty bad in her hands, and has had it since the mid 90’s. I thought it was osteoarthritis (she’s in her early 70’s), so I didn’t make much of a connection. She tells me it’s both RA and osteoarthritis and that there’s about 5-6 other family members (cousins, aunts, distant relatives) that have RA too. She also recommends that I contact my primary doctor to get tested.
That was about 5 weeks ago. Two weeks ago, I explain all this to my primary doctor (who my mother and I happen to share). He takes a look at my hands (which at this point are marginally useful, they hurt so much), and he sees the dark rings around my knuckles. He strongly suggests RA and just needs the evidence to confirm it. I take a horde of blood work with the whole gamut of RA indicators.
Fast forward to Friday, my doctor describes the Rheumatoid factor in numbers and what normal is. Mine is about 3-4 times that. Then he talks about anti-CCP, again what’s normal, and then mine that is again orders of magnitude higher. We discuss seeing a rheumatologist (appointment coming up in a week or so).
So, I’m at the beginning of this road, and I get it’s not an easy one, but one that’s been traveled by a surprising number of people (some of us hobbling as we go). I still find myself thinking “What did I do, what did I eat that caused this? What can I undo to make it go away? Is it stress induced? Can I just mellow out, de-stress, and it’ll go away?” Poking around your site, I find I’m not alone thinking that either, and that this just *is what it is*.
This is Terri’s onset of Rheumatoid Arthritis story, in her own words.
Looking back, I realize my RA may have started very slowly more than five years ago, as a very mild case. I was diagnosed with RA one year ago while it was still a mild case, but it began progressing more rapidly over the past six months.
Because I’ve read that RA may be associated with gastrointestinal dysfunction, I believe my RA may have been triggered by a major health event in my life: when my appendix ruptured six years ago. Also, I had life-threatening complications, but that may not be relevant.
In addition to ongoing fatigue after that incident, I began experiencing pain in the ball of my foot, and occasionally my heels and ankles. At the time, I blamed the foot pain on my narrow feet and difficulty finding shoes to fit properly. But now I believe my foot pain was the first symptom.
Almost three years ago, I was diagnosed with collagenous colitis, a fairly rare disorder that has been associated with autoimmune diseases, specifically including RA (see links to Mayo Clinic information if you aren’t familiar with this condition). But I still didn’t suspect RA.
Approximately two years ago, along with fatigue and general weakness, I started having some odd joint pain in one knee or the other, and sometimes I had elbow tendinitis with no known cause. Also my hands seemed “weaker” for lack of better explanation why bottles and jars were more difficult to open.
My mother (now deceased), who had severe RA, often asked me why the palms of my hands were so red but I didn’t know why and shrugged it off. It wasn’t until I started having neck pain over a year ago, and my mother told me that my red palms could indicate RA, that I starting thinking about checking it out. When four joints in both hands (knuckle and middle joints) became swollen and painful, then it made sense to me to check it out, and I made an appointment with my mother’s rheumatologist.
But when her rheumatologist diagnosed that I had RA – either early-stage or a mild case – it took me by surprise. He also found low thyroid and mild anemia. I spent six months in denial about the RA diagnosis and refused to take DMARDs, only agreeing to take meloxicam (an NSAID). Also, my symptoms came and went so often, I doubted the RA diagnosis. I was RF positive with the first test, but no other markers.
Six months ago, when the fatigue and pain made RA more of a reality for me, and more joints were quickly adding on, I agreed to begin methotrexate therapy and take prednisone when needed. But MTX didn’t significantly relieve my symptoms. Now, RA affects most of my joints. So I recently started on weekly Enbrel injections along with low-dose MTX.
This is Joanie’s onset of Rheumatoid Arthritis story, in her own words.
It all started with pain and swelling in one finger that was so bad I thought I had sprained or broken it somehow. A trip to my family doctor let me know that neither was the case and my doctor had no explanation. The pain in my finger subsided after about 36 hours and I was fine. A couple months after that, my wrist on the opposite hand swelled up and was so painful I truly thought it was broken. I didn’t go to the doctor this time and just dealt with the pain for about 2 days. This continued happening about every 2-3 months waking up with something else swollen that I was unable to move.
It wasn’t until I woke up one morning (had gone to bed in no pain) with my knee swollen and unable to walk that I started to wonder if this could be Rheumatoid Arthritis. I am a medical transcriptionist and even though this was not something I transcribed at all I had some knowledge of the disease because my sister was diagnosed with it. My first phone call that morning was to my sister and then to my sister’s rheumatoid doctor to schedule an appointment.
This rheumatologist was very thorough and I feel she ran all the right tests. She did a Rheumatoid factor test, which was normal like it was when my family doctor performed it, but she also did a C-reactive protein test that came back abnormally high. She did the x-rays of my hands and wrists that came back normal, and not surprisingly since, I think, this disease had just started in the last year and a half or so. At my follow-up visit, after all my tests, she explained that I definitely had Rheumatoid Arthritis and wanted to start me on some medications and then she started explaining the side effects of these medications to me, which scared me to death!
I do not like to take medication. So I figured that these “flare ups” only happen every so often and I could deal with that instead of all the side effects from the medication and I never went back to see the rheumatologist. Boy, was I wrong! It was summer time and being a school bus driver also I was off for the summer and able to do my medical transcription work on my laptop. So my husband and I traveled to our summer campground to have a relaxing summer. About a month into my summer I awoke and was not able to move my head. The back of my neck was so painful I couldn’t even get out of bed. This lasted for 2 days. Two weeks later, I woke up with my knee swollen, which was not good because I was just put in a cast and on crutches from falling and breaking my opposite foot.
Needless to say, that was a horrible summer! It seems every couple of months I am waking up with something else swollen or sore and not able to move. I have had to call off from work because I cannot drive a school bus on days I am “flaring up.” I have since lost my health insurance and not been able to go back to that wonderful rheumatoid doctor that wanted to help me. This disease is ruining my life! Six weeks ago I had pneumonia and was put in the hospital for 2 days and was sent home on Prednisone and I was on it for almost 2 months. I didn’t have ONE “flare up” in that time. Imagine that! Now that I am off it I wake up with my ankles hurting so bad I can hardly walk. My hope is for more affordable health care in the US and a cure for RA! Thank you Kelly for all you do! You give us all hope!