David’s Rheumatoid Arthritis story
Melisa’s Rheumatoid Arthritis story
Patty’s Rheumatoid Arthritis story
My Experience with Rheumatoid Arthritis.
I am a 52 year old male with Rheumatoid Arthritis.
Looking back over the years, I now think I see a pattern… Although only formally diagnosed with RA in August of 2009, I see that I may have had many of the symptoms for decades. A self-employed computer consultant since 1984, I have not had a typical 9-5 job and for many years have been the master of the mid-afternoon nap to combat fatigue. I also, have had periods of serious joint pain, in some cases over the years bad enough for me to prompt my doctor to run Lyme disease tests that always came back negative.
The joint pain throughout my body always went away eventually. My wife and I would go to England every year. I loved walking around for hours so I would take four 200mgs of ibuprofen and put four more in my pocket for later. Little did I know that I was on the right track, that ibuprofen would become one of my closest friends in a few years. I felt so “run down” much of the time, but was not only able to live a “normal life;” by most standards I was living an exciting life filled with adventure.
In 1999, in an effort to “bond” more with my son who was 14 years old at the time, we decided to learn SCUBA Diving together. Within a year he discovered girls and spent much less time SCUBA diving. At the same time, I discovered I loved SCUBA diving and spent every minute I could learning about decompression diving and other advanced aspects of diving and doing it locally here in the New York/Long Island area. Being also a bit of a maritime history buff dovetailed nicely with my interest in the sea. I would spend time exploring 120 foot deep local shipwrecks wearing equipment that weighed 150 to 200 pounds and climbing back onto the dive boats in choppy seas with all that heavy equipment.
I got very into it, would go diving almost every weekend year round. In the winter, I could be found ice diving in 28 degree water in my ‘dry suit’. After a number of magazine articles, in 2008 I wrote a book which was well received at the time by the dive community here in New York. Shortly after the book came out I got sicker, much sicker, and am still struggling to battle this disease; it’s worse than any shark. More confusing with more twists and turns than the inside of any collapsing wreck of a ship. I am trapped inside and I can’t get out. Eventually, my air tank will run out and hopefully I will have gotten out of the RA shipwreck before that happens.
My last dive was about one year ago and was in twelve feet of water with another diver who kept an eye on me for the dive. The problem has been that I can no longer “work around” my RA. It has come to the forefront with a vengeance and is constantly there, reminding me in its inimitable way that I am at its mercy and I now have to deal with life more on its terms than mine.
My first very serious symptoms of Rheumatoid Arthritis appeared in March of 2009 a few days after I had my first colonoscopy. The colonoscopy went fine, but 4 days later my right knee swelled up incredibly and boy did it hurt. I could barely walk. I went to an orthopedist who x-rayed it and found nothing except for “age appropriate arthritis.” He had a somewhat condescending attitude as he told me that I had to accept I was getting older and I should get more exercise and it’s going to be all downhill from here. At the time I didn’t realize just how insensitive he was being, I actually blamed myself a bit for not exercising enough. He prescribed some Voltaren anti-inflammatory gel which I didn’t bother getting. The swollen knee went away by itself in a couple of days.
Also around this time, I noticed that some areas of my body hurt more than others. For example my hands and wrists were killing me. Not good. I earn my living on the keyboard and decided I must need a more ergonomic keyboard and mouse. I’m pretty smart but, oh, how stupid I was; I just wasn’t putting it all together – not getting the BIG picture. Now I know that RA attacks the wrists and particularly gets the base of my thumbs. I went to doctor number 2, my GP who ordered some blood tests.
As this was going on, I noticed that every morning I had a new stiffness and pain in my entire body that I had never had before. It was noticeably worse every morning and it was lasting longer and longer into the day. Within a few days I could barely walk when I awoke in the morning. I hobbled like an old man and my entire body hurt a lot. Was I dying? Was this how ALS (Lou Gehrig’s disease) started? Would my body fail piece by piece leaving only my fully comprehending mind to ponder what life used to be like? A few days later I had a problem with my right ankle very similar to the knee problem and it also went away after a few days.
Now the pain was in the base of my big left toe. A bit of research on the internet and I knew I had Gout. I even had that symptom where the weight of a sheet could cause excruciating pain. I had an upcoming trip to England in a few weeks and started to worry I might need a wheelchair. Since the pain was in my toe, I went to a Podiatrist. (Doctor #3). She ordered more tests. Uric acid blood levels were right at the borderline. She did an ultrasound (inconclusive), ordered an MRI, injected a steroid into the base of the big toe (OUCH! Makes a crunching sound…) Gave me a prescription for Dolobid, an anti-inflammatory drug. Another prescription for Colchicine and sent me off to have a pretty painful and mediocre trip to visit family “across the pond.”
I came back from England and the results were back from my GP who had noticed some high RA numbers and he referred me to the first Rheumatologist. (Doctor #4) The somewhat elderly Rheumatologist looked at the report, looked at me and told me that I did not have Lupus. Apparently that’s all he had been considering. He gave me a pat on the back and sent me on my way after telling me I was a “healthy young man” and not to worry.
At this point, I was no longer diving. I felt like crying when I couldn’t even pick up my three year old daughter. I felt sick all the time, with a flu like malaise with zero energy. I was now hobbling from the time I woke up until early afternoon. I looked funny when I walked, my gait had taken on the look of a sailor just off a ship. My hips were beginning to hurt. Having given up diving I decided I was going to learn how to fly a plane. I figured it was less physically demanding. I found I loved flying. But…
What was really scaring me was my increasing restriction of movement. It was a struggle to close shirt buttons. One day I woke up and I couldn’t slide my right index finger down along my thumb to the base of my thumb. I could do it the day before…. Before a flying lesson I would check out “Can I operate the plane’s throttle? (It’s a knob in a Cessna 170.) Can I reach over behind my shoulder with my other arm? If I couldn’t that day I would cancel the lesson. Now it was August. About 25 years back I had liver problems so I went to a liver specialist (Doctor #5) who ran tests and informed me that my liver was just fine (thank you!) but he gave me a referral to a second Rheumatologist (Doctor #6) as the situation continued to decline.
The second I walked into this doctor’s office I liked her. She asked to see my hands and pointed. “You see those? Those are classic Rheumatoid Nodules. Let’s run some blood tests. I’ll bet you’ve got Rheumatoid Arthritis.” I left her office with prescriptions for Ibuprofen and that miracle drug with a long term price; Prednisone. Within a few days my symptoms were improving and we were coming up with a longer range plan. I tried Plaquenil; I felt it was interfering with my thinking process and was worried about its effect on vision so stopped it due to the flying. I started Methotrexate which we slowly increased the dosage over a period of months carefully monitoring my liver. It had some very bad side effects of depression as the dosage got to 20mg a week. Due to my negative mental state and what I perceived as a lessening of mental clarity, November 19, 2009 was my last flying lesson. I had done about 230 takeoffs and landings with the instructor and about 12 solo take offs and landings. You really need clarity of mind and focus to fly a plane. Maybe it will return once I stabilize.
At the end of December 2009 the depression was bad enough that I stopped the Methotrexate after talking to my Rheumatologist and almost all of the depression went away within a few days. What remained was the remnants of having to deal with my disease and the “new me;” weaker, in pain and the whole life change thing and an unhealthy dose of self-pity. I then started weekly Enbrel self-injections combined with half the amount of Methotrexate I had been previously taking. I am still not clear how much the Enbrel is helping the general everyday symptoms. I think I have less of the “flu-like” malaise, but still live with daily pain and I still get flare-ups with some regularity. I guess I had been hoping the Enbrel would make it as if I had never met RA. This past August my hip pain has increased with pain starting to extend down both thighs almost to the knees. I have bruises that take three weeks to heal. I feel like my skin is paper thin from the Prednisone which I am slowly weaning down off of. Last week, I developed a sudden major swelling on the right side of my face that the dentist stated after taking panoramic x-rays and regular x-rays: “I can find no dental reason for the swelling and no infection. David you did say you have RA, and that is the jaw joint… It could be an RA flare….”
Even though I have not had excessive eye/mouth dryness a doctor friend of mine mentioned that it’s the same area that Sjogren’s syndrome might show up along the salivary gland that’s there under the surface of the face. My GP suggested it could have been a clogged salivary gland duct. All I know is it appeared out of nowhere, hurt like hell and went away on its own within a few days; just like every other RA flare I ever have.
One of the areas I am still learning how to adjust is coming to terms with a new self image, one which I don’t particularly like. I used to feel like a real adventurer, exploring shipwrecks, learning how to fly and now, I am hard pressed to run when crossing a street if the light changes and a car is headed at me. When I help my little girl build a sand castle it’s with the knowledge I’ll be sore for days afterwards.
I look quite healthy. In fact, since starting the Enbrel I’ve shed a few pounds so some folks see me and would never guess I am quite sick. They might even say “David, you’re looking great. If they know the little signs to watch out for they’ll pick it up before long. The using my arms to push myself up out of a chair I’ve been in. The swinging both feet out of the car and standing up on both at the same time. The hesitation of taking a second to look around to think out how I’m going to make my next move if it looks like I might have to do something painful. The guttural grunts and groans when I pick something up or do something that triggers a particularly bad pain. I used to hear my elderly Mom make those sounds when she moved around. Now, I understand. Besides the pain and fatigue of RA I have the annoyance of the many well intentioned folk that say all sorts of things that show they don’t understand what it is like living with Rheumatoid Arthritis. Things like “it’s only arthritis” or “just get some more exercise.”
With all the above complaints it’s become apparent to me that as usual, it’s me that is the problem. I need to do less feeling sorry for myself, and get more positive in my attitude. Hell, I’ve practically wasted the last year wallowing and mourning the old me. Time to move on!
Trying to take RA a day at a time, thanks for listening.
David is the author of 2 books on SCUBA and flying in NY. You can find more information on his website, The Wharves Project.
This is Melisa’s onset of Rheumatoid Arthritis story, in her own words.
Last spring, I was at the gym five days a week. I loved it. I’ve had weak wrists and ankles for as long as I could remember, so I always take it easy on them (modify push-ups, etc.). But, I’ve never had a problem with my knees. Then during a workout one day, I felt it tweak. I was more in shock than in pain. I continued my workout. Actually, I continued to work out 5 days a week for a couple more months.
I moved to a new town, and within a couple of weeks, I couldn’t even go up stairs, let alone go to the gym. The pain was insane. I finally made an appointment with orthopedic surgeon. I was really worried I had torn a meniscus and I would need surgery. I had an x-ray done and the doctor started questioning the history I had given him after he saw more damage to my joints than a 32 yr old should have. How were my other joints? Pretty weak. Did I have a family history of Rheumatoid Arthritis? Yes, my mom was diagnosed at age 19. Had I been tested for RA? Nope.
He wanted to do an MRI along with the blood work to see if I did have an injury. I never thought I would be so hopeful to need surgery! I was really hoping there was an injury that would require surgery rather than a lifetime of dealing with RA. No such luck. My RA factor came back ridiculously high. I called my mom in the parking lot and we both cried together.
I got into a rheumatologist pretty soon after that. I really didn’t want to get on medications, so I asked her if we could put it off since my only real symptom was my painful knee. She drained 40 cc’s of fluid from my knee and I hoped that I would be able to function normally without medicine. But within a matter of weeks, my hands ached, my feet ached, and the swelling in my knee was ridiculous. I decided it was time to start medication before I started having permanent damage.
I’ve been on Humira ever since, and I almost forgot I had RA for several months! But RA, being RA, keeps throwing me for loops, and the pain keeps coming back. I feel guilty complaining to my mom since she’s got metal in so many joints and I’m not that bad yet. Plus she just finished a bout with lymphoma. I’m really hoping I don’t follow her footsteps with that one!
Find out more about Melisa on her website, Signing with a Smile.
This is Patty’s onset of Rheumatoid Arthritis story, in her own words
My name is Patty. My RA started in 1977 when I was 29 years old. I had two little girls to take care of, ages 4 and 7. I worked as a hairdresser. I was married to a cruel man with no ability to care. I had just been through a terrible time of trauma with him, so I left him and we were staying with my parents. I believe the onset of RA was caused, in part, because my body couldn’t cope with the long-term stress any longer.
One day when I woke to get ready for work, my feet were so painful I couldn’t stand. I took some aspirin and “worked through it.” By noon I was fine and just put it out of my mind. It never occurred to me that it would happen again. (This certainly doesn’t fit the “hand disease” description I read about.
Soon after, my shoulders were affected, then my hands and wrists and every joint in my body, as well as soft tissue pain. As a hairdresser I worked 10 hour days on my feet, and my hands, wrists and shoulders really got a workout. My employers told me I was babying myself and that it was hard for all of them to work these hours.
When I went to my family Dr., he gave me naproxen. When I went back the next week and told him it didn’t do anything for the pain, he said he couldn’t do anymore and I should keep taking it. As I left his nurse told me the Dr. said it was “all in my head” and I might want to see a psychiatrist. I cried all the way home. A few months later my mother told me of a Dr. who gave a talk on “arthritis” and I might want to see him. He had trained at a nearby hospital and told me of a rheumatologist there. Who knew there was such a Dr.?
I got an appointment a couple months later and he put me in the hospital for a month to try medications to help me. I was so grateful to be able to just lie in bed and be taken care of after TWO YEARS of just coping and not complaining – nobody wanted to hear it!
Finally I can remember waking up in bed on my stomach and realizing I had turned over in bed for the first time since the onset! It was a wonderful feeling. Trilisate was the medicine that had helped. But, at that time the treatment plan was to keep me on the least dangerous drug and work up as my disease required. So in the mean time my joints were slowly deteriorating. I don’t remember all the drugs I had tried over the years, which ones helped and which ones didn’t, but I do remember I took penicillimine and had gold injections. They’re probably not even used anymore.
Today I’m 62. I’ve had 9 surgeries on my right hip, 2 elbow surgeries, 4 joints removed from my left foot and most recently a right foot ankle fusion. I’ve been in a wheelchair for 3 years, but since the ankle fusion and a leg brace, I am now starting to walk a bit with the walker. Do I just want to be wheelchair bound the rest of my life? If I don’t get out of this chair soon that’s what will happen. I need help with this.