Jordan’s Juvenile Rheumatoid Arthritis story
The Ankylosing spondylitis story of URandomnessK
Irene’s Rheumatoid Arthritis story
Kate’s Rheumatoid Arthritis story
This is Jordan’s JRA Onset Story, in the words of her mom, Stacey
Our arthritis story is a bit different then most. People hear about the older people who get RA but you never hear about the kids who live with this disease day in and day out.
My daughter Jordan was just 2 when we noticed she was limping a bit. It wasn’t anything major, she just limped here and there. Never complained about anything hurting her. A few months later I noticed she was favoring her right leg. No swelling or anything. A few days later, 12/24/04, while getting ready to make our special Christmas cookies I noticed she was really limping. I looked at her knee and it was about twice it’s normal size. I called my husband, who was working, and told him I was taking Jordan to urgent care because something was wrong. We get there and of course the doctor asks if she fell or anything like that. Jordan was the typical toddler and she was always falling. She had some x-rays done and I was told she probably fell and she’d be fine. If she wasn’t better I should follow up with her regular doctor.
Jordan never got better. In fact, she got worse. She’d cry every morning because she could not walk. She started crawling more to avoid walking. I took her to her ped and he reviewed the x-rays, ordered more and sent us for blood work. Again everything came back fine. We were then told we should see a pediatric orthopedic surgeon. There was 1 in our area and of course he was booked. Not knowing whatelse to do I made an appointment with an adult ortho. Not a good idea. He saw Jordan, watched her walk and and how she favored her leg but insisted there was nothing wrong. He too assumed she fell and she’d be fine. All this took place in about a 4 month period so I knew if she had fallen and just hurt her knee she would have been better by now. Unhappy with this doctor I called the ped ortho and was put on a cancelation list. We were in to see him within a week. He came in, spent all of 30 seconds with Jordan and knew she had juvenile rheumatoid arthritis. Based on her symptoms and her x-rays, which did show fluid in her joint, he knew. He scheduled her for orthoscopic surgery 10 days later to drain the fluid and take tissue samples to confirm JRA. 6 months after the arthritis was officially diagnosed she developed uveitis. What started out as a swollen knee has spread to 5 joints and it doesn’t seem to be slowing down.
Jordan is now 7. She’s been on several different medications over the last 5 years. She is the strongest and bravest person I know. She has had to deal with more then her share of pain in her short life. She has helped me with my recent diagnosis of some sort of connective tissue disease. If my baby can take all these meds and deal with the shots and pain, so can I. I hope I can be as strong as she has been through all this.
Stacey’s blog is Peanut and Bub.
This is the Onset Story of URandomnessK, who has Ankylosing Spondylitis, an autoimmune arthritic disease which is in a class called Spondyloarthropathy.
Individuals with AS or RA often talk about their journey. This to us means how life used to be and how it is now including how we came to be diagnosed.
I was born in the summer of 1983, three and a half weeks premature. I was the first child to be carried “to term” and born to my parents. My mother had experienced ten years of fertility challenges including more miscarriages than she could ever count. She begged and pleaded with G-d for ten years before being blessed with a child. I was born with no complications but soon after both was diagnosed with asthma.
Developmentally I was average to above average. I walked fairly early and my first word was chocolate. My mother and father were blessed with a second child two and a half years after my birth. Shortly after this my mother was diagnosed with Chronic Fatigue Syndrome and later diagnosed with Fibromyalgia. My father worked full time and was very active in our church. My mother was a stay at home mother who wanted to give my sister and I ever opportunity possible in life.
When I began nursery school I complained about my knee hurting. The doctors told my mother that nothing was wrong. In elementary school I was diagnosed for the first time with strep throat. This strep throat had an interesting side effect, a swollen left knee. The doctors did not connect the two at first however I then began to get strep throat frequently, approximately once a month. Every time that I had strep throat I had a swollen left knee that was painful to move or put weight on. My pediatrician sent me to a specialist. I saw specialist after specialist and had so many tests done at Children’s Memorial Hospital of Chicago. Eventually they gave up, they were stumped and said the believe that I had reactive arthritis which would mean my knee would react when I have strep. I missed so much school at that point, I had so many tests done, I had been to see so many doctors and spent so much time at the hospital. Children at school teased me. I was strange because I missed school so much. By middle school I had fractured my left foot, had ankle, knee and wrist problems. I missed even more school. I spent so much time sitting and watching in gym class because I could not participate.
In elementary, middle and high school every summer I went to girl scout camp. I went up there and horseback rode all summer long. By high school I was an assistant instructor and taught other girl scouts how to ride. When I was 15 years old I went to my last year of girl scout camp. I did steeple chase with some of the other instructors. We had done it time and time again and LOVED it. There is nothing like galloping through the forest, jumping over downed trees and feeling like you are flying. It is still by far the best feeling I have ever experienced in my entire life. This steeple chase was different. I was going to ride a horse that had been ill all summer. It was the last week of camp and this horse was finally ready to be ridden and they said “hey do you mind” sure no problem! I jumped up on the horse and away we went. Well we did not make it very far before the horse threw me off into a tree. Not just any tree but one of those trees with the really long thorns all over it. It ripped my shirt off, some muscle from my left upper arm (bicep) and left me bleeding. They say that you should always get back on when you fall off, so back on I went. I jumped up on that horse only to come right back down, this time the horse stomped on my foot and broke three toes but back up I went, right back to the barn. I was DONE, no more riding this horse. I rode him back to the barn, took his saddle and all off, put him away and stumbled back to camp. I didn’t realize how messed up I really was. I cleaned up my wounds, iced and taped my toes and enjoyed the last week of camp.
When I got back from camp, high school began. I was in my sophomore year of college and joined the diving team. It was 1999, I completed the entire diving season and LOVED it. By the end of the diving season in October 1999 my back was still hurting after my horseback riding accident from August. So I went to see my dr. My dr also specialized in sports medicine and thought just in case she would get an x-ray of my spine. Well the next day as I walked out to the car from post season diving (the last day of it) my Mom met me and said, “the hospital called about your x-rays, you have a compression” I thought, okay, a compression I dont even know what that is but who cares because I’m fine. I called a close friend of mine who was in medical school at the time and asked her what it was. She explained to me that it is when your bone has so much pressure on it that it compresses and fractures. So I had a fracture at T12 in my spine. I was lucky I could walk the doctors told me.
As the doctors recommended I spent the next six months on bed rest flat on my back only getting up to use the bathroom and shower. During that time I had a tutor come out to my house and bring me my homework and I was left alone to figure out my assignments and do them, teaching myself. The tutor would them come back and pick up my homework when I was done. When I was done with bed rest I went on to continue horseback riding, dancing and diving like I had been for years, but gave up on gymnastics.
At that time I saw a pediatric orthopedic surgeon who gave me my options. He said I have a fracture at T12 and reverse scoliosis which is very rare. I decided to continue with the pain and not have surgery, only doing the recommended bed rest. My junior and senior year my back still gave me lots of problems. My junior year of high school I was so fatigued, and so sick that I was hospitalized and told I had only days to live before I would die of what they thought was cancer.
To their surprised I did not die, I got better from steroid injections in large doses. This shocked and amazed the doctors but they couldn’t explain it. At that point in time I saw specialist after specialist and was diagnosed with IBS.
My senior year of high school I graduated a semester early, met my now husband and was admitted to the college of my choice (Bradley University).
Fall 2001 i attended my first year of college and was on the Bradley University Swimming and Diving Team, NCAA Div. 1. I was so very excited but soon was spending more and more time at the sports center for my back pain. I went to the hospital, saw drs and specialists before finally giving up on diving, dance and even horseback riding. Sophomore year of college I had more symptoms. Spring 2003 I had a fever of 104 degrees and I was in so much pain I laid on the tile floor of my dorm room. A friend picked me up, put me in his pick up truck and drove me back to my parents house three hours away. My parents took me to the doctor and he had me admitted to the hospital. In the hospital I laid for one week as they did test after test after test. The last test that they did, they said probably would reveal nothing but there were no other tests to do and they were stumped. Well, the test revealed that my gull bladder did not contract therefore did not work. I had surgery within a few days, it was removed.
I then when back to college and enjoyed the rest of the semester but my dr was very confused as to why a healthy 20 year old would need their gull bladder removed. So he did blood work and x-rays but was not 100 percent sure.
Fall 2003 I moved off campus and enjoyed living with my sorority sisters. This was the year my life truly was flipped upside down never to return right side up again. I had what the health center at college and the local ER thought was pink eye but it wouldn’t go away. Not knowing what else to do they sent me to The Illinois Eye Institute where they diagnosed me with Iritis. They said that iritis was only a reaction to a bigger and much more serious medical condition. So I went back to my dr, more blood work, more x-rays and a popped optic ring later I was diagnosed with Ankylosing Spondylitis. I remember the doctor calling me and telling me. I couldn’t comprehend what he meant.
From that night forward I researched AS. I couldn’t believe it, all the symptoms fit! Finally and explanation!! But at the same time I was devastated, i had a diagnosis of a disease that would haunt me for the rest of my life.
Today I live my life day to day, sometimes even hour to hour. I do not do ballet anymore, I do not dive anymore, I don’t do gymnastics anymore, I can’t run, jumping is out of the question, sometimes getting out of bed is out of the question. But I still horseback ride. I wont let AS take that away from me. My senior year of college I was the founding member and president of the Bradley University Equestrian Team and rode six days a week. It brought back the inspiration, that spark, that reason to live every single day with a smile and passion.
I currently use a TENS unit for back pain, Tramadol (Ryzolt ER) 100mg twice daily, baclofen 10mg, robaxin 750mg three times per day. lexapro 20mg daily for anxiety caused by my AS, singular for the asthma so it does not get worse because of my AS and then i have vicodine extra strength for those days when the pain is too bad and valium for an added boost for those days. Lastly I take protonix because of the ulcer my meds have caused. When I was dianogsed with an ulcer I also was diagnosed with pancreatitis from the NSAIDS, talk about a rare side effect! But day by day I learn more about myself and how to listen to my body. It is a challenge. I used to live by the motto no pain no gain and now my motto is, baby steps, tomorrow is a new day. AS may have taken away ballet, gymnastics and diving but it will NEVER take away my passion for life and my inspiration to complete my Ph.D. in Clinical Psychology!
Every night I pray that there will be a cure for AS. Until there is a cure, I continue to talk to everyone who will listen about AS, RA, Lupus and all of our arthritis types. I share my story with everyone, I share stats, I even inspired Fiskar’s to consider tackling and making a new line of arthritis tools for those of us who want to resume our daily life but need some modifications. So tell everyone who will listen, keep on spreading the word because one day SOMEONE will listen and that someone will make a difference because YOU made a difference in their life!
This is Irene’s Rheumatoid Arthritis Onset Story, in her own words.
Having been a heavy smoker for 40 years, I decided to quit at the end of January 2009. I used NiQUITin patches and was very successful. I was pleased with myself and adopted a new, healthy lifestyle which included eating a healthy breakfast and and drinking an Actimel every day to boost my immune system.
Towards the weaning off stages of the patches, I experienced some aches in my upper arms which I put down to a mild reaction to them. I ignored them as I was determined to quit and this seemed a small price to pay to be smoke-free. By the time I finished the patches at the end of April, I couldn’t lift my arms away from my body. I rested a bit and it got a little better.
I had signed up to do a Mini Marathon in June and noticed that my hands and wrists became a little numb and stiff when walking. I was walking past a Chiropractor’s office one day and noticed an ad in the window which asked Having Trouble with Arm Pain? I was told that I had muscular inaction and was given a schedule of thrice weekly sessions which involved jerking my fingers and neck. By then I had pain at a different site every morning.
I went to my GP who ordered blood tests and X-Rays and referred me to a Physiotherapist. Results came back in dribs and drabs – all clear. The pain was worsening and spreading so I resumed smoking. Then the call came from my GP. My RF and Anti CCP were both positive but I would have to see a Rheumatologist to confirm the diagnosis. In September, I was put on Prednisolone for a month along with Methotrexate. It’s worked pretty well except for my feet and ankles, but maybe they will improve in time. My position will be reviewed in December when I’ll have taken the MTX for 12 weeks.
I’ve educated myself and read all the articles about smoking being a risk factor with RA. However, nothing can convince me that it wasn’t nicotine withdrawal which was the trigger for my getting RA. Medical professionals all dismiss this as nonsense. I would love to hear from anyone who has had a similar experience.
This is Kate’s Rheumatoid Arthritis Onset Story, in her own words.
My RA Onset Story: My name is Kate and I live in New Jersey. My story is a bit hard to tell because I’m not sure when the onset was. I’m 52 and was just diagnosed with RA last May. I had Polio when I was one year old and was left with my right leg in a full brace and I walk on forearm style crutches. Even with this, I managed to live a pretty active life, traveling the world on my own, working for the government and working for a family construction business, picking my way around job sites. My problem with figuring out what were the first signs of RA is that many of my problems could also be attributed to Post Polio Syndrome or just plain overuse of muscles and joints.
Were my first signs back in 1988 when I was working 70-80 hours a week on a campaign and was so consumed by joint pain and tiredness that I almost had to quit? Or was it just the damp weather of the Northwest and overwork?
Was it in the early ’90’s when I was helping to care for my dying mother and could no longer muster the strength to climb to the 2nd floor in her house to see her? Or was that the stress of losing a parent and climbing those stairs one too many times?
Maybe it was in ’94 or ’95 as I was preparing for a trip to Paris and my left foot and ankle blew up for no obvious reason. I was given Prednisone and the inflammation and pain went away. A side benefit was no jet lag and the ability to eat the huge meals set before me.
Preparing for my wedding in 2002, I suffered terrible pain in my hips and sciatica. I was told that it was spinal stenosis and it faded with time and lots of NSAIDS.
My shoulders went next. First my left and then my right. Overuse, I was told. This made sense. I’d been walking on crutches my whole life. But, the pain would flare up and then go away. X-rays were taken, MRI’s were taken. Everything always showed arthritis but this was seen as normal. Just take more NSAIDS. By this time I had been on Celebrex for 15 years and it was actually causing inflammation, not helping it. I seem to be allergic to most narcotics and so my pain killer options are pretty limited. This was also the time of my first esophagus surgery. (I’ve had two) My reflux and heartburn were causing terrible damage.
My Polio doctor insisted that I start using a wheelchair in the house in order to save my shoulders. He said that everything I was complaining of could be contributed to Post Polio Syndrome and that I needed to slow down and rest more. I hated having to use the chair but it did make my life easier. I still got up and walked around but it seemed that I was getting weaker and weaker every day. Everything seemed to hurt and it exhausted me just getting dressed in the morning. I blamed it on the chair and getting de-conditioned.
Then, about 2 1/2 years ago, I climbed onto the floor to get something under the bed and pulled myself back up into the chair. My wrists screamed at me. The next morning, my hands and wrists were so swollen that I couldn’t bend my fingers. I thought that I had injured them climbing on the floor. The only thing that seemed to help was to keep my hands in ice. My GP was not available so I saw another GP in the same practice and she suggested gout. She put me on gout meds but she also referred me to a rheumatalogist. By the time I saw the rheumy, my swelling was down and the pain had abated somewhat. I had blood work done and nothing showed up. The doctors all assumed that this was just a case of overuse of my wrists on the crutches. No one around me could really understand the pain. My step-daughter and her husband are both doctors and they just shrugged their shoulders and changed the subject. I felt like I was complaining way too much.
So, for the past 2 years I have had pain first in one hand, then in the other. Up one arm, then the other. The progression became predictable. I knew that as soon as one abated, the other would ignite. The pain would be worst at night, keeping me up, rocking and sobbing quietly so as not to wake my husband. I dreaded having to go to the bathroom because I had to use my arms and hands to transfer from the chair to the toilet. The pain would take my breath away. And then… it would just fade away. I knew that this was not just overuse. This had to be something else. In addition to the pain, I was also feeling exhausted and was getting low grade fevers. I insisted on being tested for Lyme. Negative. My Rheum. blood tests also came back negative. One test showed a high WBC but that was shrugged off. Finally, last May, I asked for the blood work to be done again. This time, my rheum. factor came back very high and I was sent back to the rhuemy. She put me on prednisone and hydrochloriquine right away. I was on the steroids for 6 weeks. They really helped but I was terrified of the side effects.
Now I’m on MTX and hydro. The MTX pills didn’t play well with my digestion so I’m doing the injections. I’m only taking 1/2 cc but I understand that I have to be moved up gradually. I am feeling better but not great. I’m also scared that so much time went by before I was diagnosed. How much better would I be if doctors had recognized it sooner? Should my current doctor be treating me more aggressively? All of my reading says that she should, but maybe this is the pace my treatment should be at.
I’m very glad to have found your site and to get the opportunity to read other stories. It really helps to not feel so alone in this.