Dan’s Rheumatoid Arthritis story
Judy’s Rheumatoid Arthritis story
Kathryn’s Rheumatoid Arthritis story
Stephanie’s (3) Rheumatoid Arthritis story
This is Dan’s Rheumatoid Arthritis Story, in his own words.
RA: The Hardest Mountain to Climb
I live an active lifestyle, both personally and professionally. I am an outdoor journalist, writing about hiking, climbing, skiing, snowshoeing, paragliding, kayaking and cycling for a variety of regional, national and international publications. I’ve been playing at this profession (passion?) since the age of 23. Prior to that, my outdoor adventures were purely for recreational purposes.
So, for the last 20 years, I’ve been paid to play outside, pushing myself through some pretty intense physical activities. So perhaps I can be excused when, several years ago, I merely shrugged off pain that struck periodically in various joints of my body. I suspected these were merely the results of years of hard use and self-medicated with increasingly high doses of what mountaineers call Vitamin I (Ibuprofen). The pain migrated with no reason nor logic, though, from joint to joint. One day, I’d find sharp, focused pain my wrists, the next in my knees.
Finally, about 5 years ago, I awoke one night in early summer with severe pain in my right shoulder and I could no longer pretend it was a normal reaction to my work and play. The pain was so severe, I could not sit, nor lie down. I sincerely believed I had somehow dislocated my shoulder during the previous days’ paragliding adventure, despite the fact that my launch, flight and landing were all smooth and problem free. I literally spent the night standing and leaning against the wall, dozing off and on for nearly 6 hours before I could finally get into a doctor’s clinic.
My general-practitioner physician diagnosed me with severe tendinitis, prescribed strong pain relievers (Oxycondone) and cessation from use of my arm for at least two weeks. I opted to shelve the heavy-duty pharmaceutical, instead sticking to hearty doses of ibuprofen, but I did rest the limb and joint for a couple weeks. The pain subsided, and I eased back into my life of outdoor adventures.
A couple months later, heading into autumn now, the other shoulder (left side) seized up in pain. Yet more declarations of “tendinitis” from my doctors – I actually went to a second clinic to get another opinion, but it turned out to be the same diagnosis. I was admonished to “take it easy” for a while, so I gave up paragliding, cycling and even hiking for nearly 6 weeks.
Nearly a half a year after that first diagnosis of tendinitis, I ease back into hiking, though I carried less weight in my pack than normal. I hadn’t done any climbing or hard cycling in all that time. My shoulders proved fine and I eased back into some late season paragliding and then as winter arrived, moved back into skiing.
Around the holidays, while visiting friends a couple hundred miles from home, I awoke one morning feeling as if I had a broken wrist. Since I had been riding a snowmobile and skiing some aggressive terrain the day before, I thought I had simply jarred it and it had stiffened up overnight. Advil brought no relief, however, nor did icing it. I resisted doing anything that would put pressure on my wrist for the next several days and the pain eventually disappeared. I visited my doctor when I returned home to let him know of this latest event, and he final began to give these event more serious consideration.
He suggested some tests. I was busy, though, and neglected to follow up. Until a couple or two later, when once again I awoke in the middle of the night feeling as if my right shoulder had been dislocated in my sleep. Knowing I hadn’t been playing rugby in my sleep, and that my wife wasn’t the type to beat on me as slept, I called the clinic the next morning as soon as they opened. My doctor told me to get in ASAP so they could run a full battery of blood tests. Less than 24 hours later, he had admitted his long-running mistakes and promptly referred me to a top-notch rheumatologist in the area – seems my blood showed a rheumatoid factor that was well into the ‘severe RA’ category.
So, just about four years ago, I received my RA diagnosis. Since then, I’ve learned that my paternal grandmother – who died at the age of 46, well before I was born – had severe RA herself. In fact, I’m now told it was complications from her treatment, which at the time (1950s and early 60s) was largely limited to steroids, that was suspected to have led to her early death. I’ve since tracked down other family members on my dad’s side of the family who have RA or other auto-immune disorders.
RA has affected my life, but I make every effort to limit its impact. Throughout my life, I’ve been an active outdoor recreationist, and I still continue to enjoy outdoor adventures. But I do so now with more pain – and that’s saying something! Indeed, I like to think I have a fairly high pain threshold. Prior to my full-onset RA, I experienced a few significant non-RA pain episodes so I think I can honestly compare levels of pain. I grew up in farm country, and have worked hard and played hard for as long as I can remember.
In my early teens, I severed a finger when my hand got caught in a chain-drive on a lawn mower (very painful!). I crashed my bicycle when I was 25, tumbled head over heels down an embankment, put my leg through the front wheel, and drove a broken spoke through my calf muscle and into my tibia. When no help arrived (this occurred on the shoulder of a busy highway, but no cars stopped to assist me) I had to pull that broken spoke out of my leg myself so I could extract myself from the mangled bike frame. I then hobbled nearly a mile down the road to a convenience store where I could call for a ride –EXTREMELY painful event!
Just two years before my RA diagnosis, I literally pulverized my right heel when I crashed my paraglider into a cliff — my heel bone was smashed into a pile of bone fragments. That same accident resulted in a broken wrist, severely lacerated thigh, two cracked ribs and a cracked tailbone – VERY severe pain!!!
Today, a bad RA episode easily eclipses the pain in all those events. Yet, as someone once said, “there is no lemon-law for your body, so you have to deal with what you got.” I’d rather not experience the misfortunes of RA, but since that’s the hand I’ve been dealt, I’ll deal with it as best I can while getting out and enjoying life to the fullest extent possible.
Follow Dan’s adventures on his blog, Adventure’s Northwest.
This is Judy’s Rheumatoid Arthritis Story, in her own words.
The onset of RA hit me hard like a ton of bricks!
My name is Judy and I am 46 years old and I was diagnosed with RA in 1996 after the birth of my last child. RA hit me hard about four weeks after childbirth. Now most mothers go through some type of post-partum issues whether physical or emotional so when my symptoms onset, I just figured it was childbirth recovery issues. After all, it had only been four weeks since I gave birth and I was in labor for about two days, so my body had been through a lot. However, as my symptoms got worse, I knew something else was going on. I experienced really bad joint pain and stiffness and it hit me hard – very hard. One day I was fine, the next morning I was NOT fine. Looking back, I can say I woke up to a full blown flare and it happened overnight! I could not move my neck (try nursing a baby and not being able to move your neck! Lol) – My feet hurt so bad instead of walking I shuffled. I had Pain Du Jour – no kidding! My hubby and I even joked about the Pain of the Day – Everyday it was some new pain and stiffness occurring throughout my bod – my feet, my neck, my knees…what was going on with me? Grrr!
Anyways, here is a summary of the onset of my symptoms:
- Feet first – My heels hurt so bad that I could barely walk. I thought it was just some cr@ppy sandals I wore and the extra weight I was carrying around (remember I just had a baby!)
- Neck stiffness – I could not turn my neck to either side – I even bought a neck brace.
- Knees and wrists – I took hot baths in the morning to ease the stiffness and pain the hubby had to help me out of the tub – wrists and knees were so bad I could not get up!
- Travelling joint pain and stiffness – it just travelled thru my bod and landed in different places.
Now I could not take any pain meds as I was nursing. My only remedies were hot baths, icy hot (cream) and hot packs.
Summary of RA diagnosis:
- Dr #1 (not a rheumy) – Well, I finally went to a Dr and he told me he did not want to label me with RA. Yeah, whatever. He gave me Motrin and told me to come back. Now my sister had RA so I decided I better go to a rheumy and make sure that I do not have RA (fingers crossed).
- Dr #2 – a Rheumy in Fullerton, CA – He was a very good Dr (personality? Well, kind of cardboard-like but he knew his stuff). He pressed his thumbs into my heels and I went through the roof. More physical tests, a few blood tests later, a positive RA factor and elevated sed rate and I was diagnosed with RA. Started me on Plaquinil and Methotrexate which I did not take until three months later due to nursing.
My onset story is really short and (not) sweet. RA hit me hard like a ton of bricks one month after I had a baby. I lived with the pain and stiffness for a grueling four months so I could nurse my baby. The day I popped that first plaquinil and methotrexate was the day I had to stop nursing and that was an emotional day!
It is 13 years later (date of this writing 2/2010) and RA still bites. Although I was on meds for the past 13 years, it did not stop the progression of the disease much. I have crippled hands, wrists that are good for nothing but pain, fatigue; well all of you reading this experience the same issues so I will not go on. But what’s a girl to do? We press on and try to live our lives to the fullest. I hike and backpack even though it *kills* me! I will crawl before I let this RA get to me.
List of meds throughout my RA “career”:
- Plaquinil – retired from my drug cabinet since 2005
- Methotrexate – on and off this junk throughout my RA journey
- Arava – did not do much
- Auranofin – sucked – gave me HUGE mouth sores
- Remicade – only one infusion – had to battle insurance company
- Prednisone – on and off, lately more on than off!
- Enbrel – Taking Enbrel for the most part of 7 years
- Simponi – Tried it for 3 months in 2009, it worked for only 2.5 weeks per month
- Enbrel – back on Enbrel
- Darvocet – as needed
- Motrin- as needed
- Alternative meds – hardly ever, but if the pain is bad enough, it’s safer than Vicodin (which I hate Vicodin by the way, I feel like a choir is in my head)
Currently I am making MAJOR diet modifications to see if that might help ease RA symptoms. I have cut out all processed foods, gluten, meat, dairy, etc. I am basically living a Raw Vegan life right now. Has my RA improved from this drastic diet change? NO. In fact it got much worse for a few months. My hope was to get off of all RA meds with a plant-based diet solution. One can hope, right?
Interesting Fact: My sister and brother also have RA, so 3 out of 4 siblings have RA. How is that for genetics? What are the odds genetically for 75% of your children to have RA? Sometimes I wonder if it is external factors. Did my parents use the wrong soap? Lol!
Best wishes and relief from RA symptoms to all.
Follow Judy’s adventures on her blog, RAW Sierra.
This is Kathryn’s Rheumatoid Arthritis story, in her own words.
Up until about a year before I was diagnosed, I was a very active person. I rode bicycle, hiked, camped, loved the out of doors, was an organic vegetarian, full of life, happy, energetic, engaged.
As my husband, who is an RN, decided he wanted to work nights, and our Golden Retriever was 16 years old and would rather lick-hello a new friend that defend his area, we decided to adopt a Doberman Pinscher Puppy from a reputable breeder and Obedience train with her, which is exactly what we did.
I adore her. She was a full-time job, as any puppy is, but I felt a responsibility to raise a gentle, well-mannered and real good example of this amazing breed. So, my schedule was two exercise sessions a day, plus her training sessions and sessions of Frisbee to keep her exercised, both physically and mentally.
This went on for approximately a year and she was quite well trained.
I, on the other hand, had gained weight and had lost lots of the good feelings of being fit. As I was often elbow deep into meat, as she’s a canine, I had began to eat meat, not exercise as much myself. I hadn’t ridden my street bike in a year. Just didn’t have time.
So, I thought all these symptoms were due to my not exercising and eating meat. Also, I had noticed that I had bumps (nodules) on my elbows, knees and some of my joints. I had mild joint pain and just in general joint pain throughout. I had also turned 61.
I told my husband “I have aged so much this last year”. And what really scared me was that after a week back on my bicycle I saw no improvement, I actually felt worse, more exhausted, more stiff, more pain…something I had never felt before. I just felt very, very old.
Just as an afterthought, at my yearly physical I asked my doctor to give me an RA test, knowing, both of us, that it would come back negative.
Well, it didn’t. It came back positive. A high positive. After seeing my new Rheumatologist, the defining test, I think the CCP came back high, indicating that I not only had RA, I had the aggressive form.
I was placed on Plaquenil and I guess it’s working. I began to feel much better, but then recently have been experiencing that old fatigue and soreness/stiffness again, coupled with the fact that I’ve noticed more nodules on my fingers and more pain at my thumb joint.
So, that’s my story.
This is the Rheumatoid Arthritis story of Stephanie, in her own words.
Hi, my name is Steph. I am 61 years old. I was diagnosed with sero-negative Rheumatoid Arthritis in May of last year. As I read everyone’s stories, I wonder if I really belong to this group. Do I really have RA?
I have swelling in my hands and my lower back has facet arthritis. My toes are getting crooked. But I do not have the severe pain that everyone talks about on this blog. I have days were I ache but can still function. I do tire easy by the end of the day when I have these ache feelings.
I have a great Rheumy doc who is very informative and very understanding of how I feel. She has tried me on Plaquenil; it gave me stomach problems. I tried methotrexate and actually started feeling better, but my liver count went up a tad and that scared me so I opted not to take it. She then tried me on an antibiotic. That gave me yeast infection that wouldn’t clear up. So she tried me on Sulfasalazine. After a week, I had sores in my mouth and one morning I woke up with a rash on my hands that were tight and looked like I had red gloves on that looked like fingerless gloves. Plus my breathing was funny. I stopped by the office to tell the doc, and the nurses wouldn’t let me leave.
Now I quit taking anything until I see the doc again. I look back at my aches and realize that I probably have had Rheumatoid Arthritis longer than a year. I often have muscle cramps in my fingers and toes. That has been going on for more than a year. So I guess what I am saying is that I feel like I am out there by myself. I must say my doc is very good and kind. She really believes in treating Rheumatoid Arthritis aggressively. But, it is me who is afraid of some of the meds. This is the first time I have said all this out loud, and it feels whiney. On a more positive note I had to give up walking fast 3 miles a day to swimming laps. I can swim laps 3 -4 times a week and it is my saving grace.
Thanks everyone for all your information.