Your Rheumatoid Arthritis Onset Stories, page 22

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Lori’s Rheumatoid Arthritis story
Joanne’s Rheumatoid Arthritis story
Brenda’s Rheumatoid Arthritis story
Morgan’s Rheumatoid Arthritis story

This is Lori’s onset of Rheumatoid Arthritis story, in her own words.

My onset story fortunately is rather uneventful. We were on vacation in July 2010 in the mountains in Utah. We had been white water rafting the day before; and when I woke up the next morning I noticed my left little finger was sore. I figured I must have caught in on the rope or something else the day prior. The next morning, a couple more fingers were sore. Much like they had been pulled back too far. Again, we had been rafting, rock climbing, and doing so many things I figured I just didn’t remember hurting them. By the end of the week, all my fingers were sore & swollen & tight. Still at this point, I was thinking it was the high elevation, the 110 degree heat, or all the junk we were eating on vacation and just assumed when we got back home (Southern Coastal California) where it was cooler, it would go away.

It didn’t. It progressively got worse.  Soon, every single morning every finger joint was tight, stiff & puffy. 

I hit the internet and did a couple Google searches: “tight stiff fingers morning” and every hit came up with the same diagnosis: Rheumatoid Arthritis. I was very busy in the fall in my personal life and didn’t have time to go to my Dr. I finally went in November and walked in his office, presented the classic symptoms, and told him I thought I had RA. My Dr. is awesome. He ran some labs & confirmed what I already knew. He referred me to a rheumatologist in January 2011 who basically confirmed the RA and ruled out any additional autoimmune disorders.

That was it. I was very lucky. No running around. No rude, ignorant doctors. I’m very fortunate that everything was identified so quickly.

My RA started in my fingers in July 2010. It pretty much stayed there until January 2011. Now it is March 2011 and I feel it in my right elbow, right knee, bilateral wrists, bilateral ankles, & most of my toes. Every morning my fingers are the same and it takes several hours to get them working. Some days they loosen up, some days they don’t. But the rest of my joints seem to be hit randomly. I wake up and do a quick assessment of which ones seem to have been struck during the night.

So far, my RA has not been horribly painful.  It is more of a tight, stiff, swollen feeling in most of my joints. My right knee and right elbow tend of get fluid and also feel squishy but the pain is more annoying than painful. I am lucky. But the fatigue, now that is another story. That is the hardest part of adjusting to this disease for me. I was a person who could thrive on 5-6 hours of sleep. Now I need 10 hours, and often a nap. There are times that I can hardly wait to get home to lie down.

That’s about it so far.  I continue to think I am VERY lucky, especially after reading many others’ stories.

This is Joanne’s onset of Rheumatoid Arthritis story, in her own words.

My name is Joanne. I’m 21 years old and I live in northern Ohio. My whole life I’ve been a very over-active person. Growing up on a farm with horses, dogs, cats and goats I had a lot of chores and stuff to do. I was always outside playing, running around, having fun. Throughout school, and high school I was always into running. Once high school started I ran track and cross country mainly focusing on track. I was one of the top runners on our team all 4 years. I never had any kind of joint issues, sprained ankles, broken bones, nothing. My body was as sturdy as an ox. I was muscular and strong. Once I graduated in 2007 I continued to run, mainly running down back roads near my parents’ house. I was logging in around 7 miles a day, giving myself every Sunday to rest.

In fall of 07 I started working at a horse training facility, helping out the trainer, feeding, caring, and riding the horses. I started noticed pain and a stinging in my hands after about a month of working there. I figured it was just because I was working long hours doing hard work. So, I shrugged it off. Then my left thumb started swelling up, which I thought was odd because I had never stubbed it or even hurt it for that matter. So I said something to my doctor about it but she said it could just be I stubbed it and didn’t even notice it, keep moving it and the swelling should go down. Well, it didn’t.

Over the next few years I started to slow down on the running, and everything else for that matter. I wanted to run, but I just couldn’t. I thought that was very odd, but once again, I shrugged it off. I was running only a few times a week now. Logging in only about 15 miles a week. I was just so tired all the time. So I told my doctor, she said it was most likely from my depression (I was diagnosed when I was 16 and had been on Zoloft since). Okay, I’ll take that. Then in 2010, everything went downhill. It was like a smack in the face.

In June of 2010 I started having pain in my feet and ankles. Not normal pain, not the “I must have sprained something” kind of pain. This pain was a stinging kind of pain; it felt like I had needles poking every inch of my feet and ankles. I started not being able to walk in the mornings, taking 3 minutes just to get down the stairs. And I could not even run!! And when I tried, I would fall because my feet could not handle it. My hands started to swell up and ache all over. I couldn’t even bend my left thumb any more, it was frozen stiff. It hurt to write, type, open doors, turn on facets, open cans and milk jugs.

Everything was a challenge. So I told my mother, who herself has Rheumatoid Arthritis. It never even crossed my mind that I could have that. I’m 21 years old, I can’t get arthritis. No way, I’m too active. She said I needed to see a rheumatologist. My aunt was diagnosed with JRA when she was 12 so I figured okay, maybe its RA…but it probably isn’t. I could not get in till November; it was already July and things just kept getting worse. I took the fall off from school because I felt like I couldn’t give what I needed to. There were days when I could not even get out of bed because I didn’t want to walk, I didn’t want to even move. I just wanted to lie in my bed where I was safe

My fatigue just kept getting worse, and it wasn’t helping my depression. Luckily I had a new man in my life who helped me keep my head up and brought new meaning to everything. But my RA continued to hurt, continued to take away everything from me, bit by bit.

Once November came around I was very bitter and angry because of the pain I was in. The doctor ran some blood tests, took x-rays of my hands and feet. And everything came back positive to having RA. Everything was off the charts I remember, the tests and stuff are blurry to me but I just remember my doctor telling me “Joanne, you have severe Rheumatoid Arthritis.” My heart stopped. WHAT? I’m 21 years old I can’t have this! I’m a runner, I lift, and I work out all the time. How can this happen? He told me that it was because it ran in my family. I had the Rheumatoid factor. There was no way to prevent me from getting this disease. But he promised me by April I will be able to run like I used to again, so I was happy, for the most part.

He put me on methotrexate, a drug known to slow down the progression of RA – 8 of them, once a week. It’s now March and I feel hardly any difference from when I wasn’t on the pills. Since the beginning of 2011, my right knee has been affected, swelling, pain, stiffness, and my left elbow is showing signs along with my right wrist. I keep going back to my rheumatologist explaining to him that the meds are not doing anything. He just says to wait. I’ve been on Naproxen and it did not do a thing. I was on Vicodin for pain, which didn’t really do much. Now he has me on Tramadol, which seems to help a little. I don’t take it every day though because it gives me a ‘buzz’. So instead I take it every weekend before bed in hopes I can get some relief the next day. But it usually results in me staying up all night due to the insomnia the Tramadol causes. I have yet to really find some good pain relief besides hot presses and hot baths. The meds also mess with my appetite. I went from 135 to 123 in less than a month. I mainly force myself to eat, but it’s a daily struggle. I’m still healthy looking which is good, but it’s starting to scare me. I went from a 6 to a 4 now. And I’m already a small person, only standing at 5’2 ½. Plus not working out like used to has caused my muscle mass to decrease drastically, which makes me very, very sad. I no longer have the muscular build I used to.

I’m seeing a physical therapist now also, in hopes she can help me get back some normalcy in my life. I hope the methotrexate kicks in, I want to be put on other meds also, but my rheumatologist says to keep waiting. I’ve been trying to see other doctors, but the waiting lists are months long. And I feel while I’m waiting this disease is having a blast taking over all my joints. Luckily I have a great support group, my boyfriend, my close friends, and my family.

Since being diagnosed with RA, I’ve done countless hours of research and found out that I’m not alone. Sites like this make it easier to live with this disease; I don’t feel so alone any more. Even though this disease has taken away so much from me, I feel like it’s given me something, and that’s learning to overcome obstacles, whatever they may be. I’m glad I found this site and I hope my story can help others as much as this site and reading other peoples’ stories has helped me.

This is Brenda’s onset of Rheumatoid Arthritis story, in her own words.

Here is my story- thanks and kudos to you for such a great site. Your blog has become so much more. It is a source of inspiration to many. Your FB page is also a great avenue for those who suffer from RA – what a great service you have provided and created. Truly as a former forum on RA I understand the challenges you face. You have done a superb job.

Last week after my Orencia infusion, where it took over an hour to find a vein that would give blood in addition to IV therapy.  I took to the internet to try and diagnose myself. I have done this numerous times in the past 7 years. In addition to the bloodless veins, I have been having a tough time with my neck. You may be familiar with some of my symptoms, knife stabbing eyeball pain radiating from the rib cage upwards through the shoulder to the neck- a masseuse’ nightmare- muscles and tendons so tight they feel like a rock, alternating from the right to the left side for the past 3 months. After 40 minutes of research, it dawned on me that my Reynaud’s disease was active again. Sadly years later there still is limited information. I was however, very excited to find the RA Warrior site. What a delightful informative site. You see, in 2007 I started my own RA Forum, after having had bad experiences on several other forums that seemed to attract trouble. It was a great place, we had only 25 members. We shared daily events, new information. Mostly it was a place to connect, knowing the other members could relate to the insanity we all were thrown into once being diagnosed for RA and other autoimmune diseases. One day my best RA friend who helped me run the forum died. Laurie was a wonderful woman, who was unable to use most RA drugs and suffered complications from prednisone and died suddenly. Everyone on the site was affected by her passing and gradually the board to disappeared.

I was born with a birth defect, leaving me deaf in my left ear and with what is called a rye neck (similar to torticolis). I have had a lifetime of neck and back problems accompanied by severe headaches. I was also diagnosed with juvenile arthritis. I was able to combat these problems with chiropractic, aspirin and ibuprofen. In 2001 while on vacation my husband had a heart attack.  We were in a small town in Colorado and he had to be medivaced out. In 2004 my son was diagnosed with Hodgkin’s. When they say trauma often leads to full blown RA –well for me they weren’t joking.

I opened an Internet Cafe and Espresso Shop in May of 2004, and in late October my foot felt as if it was broken. Several days later I went to the ER. The doctor there said I had fluid in my toe joints. He recommended I see a specialist- a rheumatologist. My heart sank. My GP had just done a third blood test. The initial results indicated Lupus. My father and grandmother both battled RA. Within a week both my feet and hands were “broken.” Within 2 weeks I was seen by a RA doctor, who confirmed, along with my last blood tests that indeed I had RA. He said my Rheumatoid factor and CCP results were off the chart.  He noted that X-rays confirmed RA activity.  He wanted to put me on Enbrel as soon as possible. My insurance company disagreed. He put me on steroids and MTX, several weeks later I thought I was having diarrhea, only to discover the toilet full of blood. The first of many allergy reactions I would experience over the years to numerous NSAIDs, and RA drugs.

Over the next 2 years, my doctor and insurance company argued. My doctor finally beat the insurance company, but he had to turn me over to a different doctor. The University Hospital agreed to administer my Enbrel shot twice a week. It was crazy, but it was better than being bed-ridden. I spent 4 months unable to care for myself.  I was so embarrassed, humiliated, despondent during that time of my life. Because I looked “great” it was hard to explain why I was no longer able to work, to accomplish even simple tasks. I began to think maybe it was in my head. Maybe I was wanting sympathy because my husband and son were ill. I applied for Social Security Disability and closed my business. In 2007 with the help of an attorney I was finally approved. I did not know whether to laugh or cry when the letter arrived. My attorney had requested a special hearing. The letter was an inch thick. There was one paragraph that sticks in my mind – the judge gave the most credence to my GP who had spent 10 years trying to figure out what was wrong with me. She said she could not believe that I continued trying to work, continued to have a positive attitude, despite the debilitation that had occurred over the years from RA, Fibromyalgia, Reynauds.

It has taken 5 years for me to begin to feel like I might just be able to live with this disease. This summer I was diagnosed with Psoriatic Arthritis (just another pain in the- well you know). With the help of biologics, numerous doctors, my husband and son I am able to walk today. I do not think I will ever be able to resume the life I had. I will never regain that sharp mind, the quick wit, the never ending energy to work 16 hours a day, 7 days a week. That Brenda is gone.

 But the new Brenda is going to be okay. I tell myself that every day. At night I lie in bed and thank God for giving me another day, and ask him to find a cure for all who suffer from auto-immune diseases. I know there is no going back. I know that we all would change things in our lives if we could. But somehow there is a larger part of me that realizes that this too, this insane disease was given to me for a reason I will never know. That it too is a part of my journey. So I just keep on trudging, keep on keeping on and each day I find something else to be grateful for amidst the RA insanity.

This is Morgan’s onset of Rheumatoid Arthritis story, in her own words.

Hi my name is Morgan. I am 70 years old, and live in WA State. I was officially diagnosed with RA by a doctor in October of 2006. For years, every doctor who saw me ran tests for RA, and Lupus; results were negative for both the Rheumatoid factor and Lupus, so it was decided I must have fibromyalgia.

But let me start at the beginning…as a child, my excruciating leg pains were called “growing pains,” and in my teens my blurred vision was treated with reading glasses for “dry, tired eyes.”

I said “these glasses don’t help” and my parents were told “It’s in her imagination;” an ophthalmologist later checked them and discovered they were “No more than window glass.” At the same time I began complaining of a ‘choking’ feeling, and could not tolerate the weight of a string of pearls at the base of my throat, or any garment that had a small neck. In nursing college, my anatomy instructor used me as an example for the class to see “an enlarged” thyroid gland. My complaints were scoffed at by my parents, and I never saw a doctor. Married to an active duty Air Force Pilot, in my twenties, I was finally diagnosed with hypothyroidism, as a result of the viral infection known as Hashimoto’s thyroiditis, which compromises the thyroid gland’s ability to function; I was started on complete replacement therapy with Synthroid. During this time I had several startling, but mild, experiences of numbness and tingling over my entire body, followed by painful feet and hands, but it never lasted very long, and got no more than fleeting attention from me.

Then, one day, I was awakened by sharp pain in my right shoulder that took weeks to go away. I decided it was from carrying too heavy a load when gardening, or picking up my toddler…and then, it did go away, so why mention it to anyone?

We were living overseas for a time, and a difficult pregnancy brought us back to the states earlier than planned. After the birth of the next two daughters, for months after each one, my knees were painful and worst of all, not quite trustworthy coming down stairs. Many times I would sit down in the middle of the stairs, afraid I would fall with an infant in my arms. The civilian doctor I had at the time decided to test. He did not say what for, but I had to return for results. At that time he commented, “Well, you don’t have Lupus,” and I was startled enough for him to add that even if I did have Lupus, “People are living much longer with it today than they used to; I really think you might have a condition where you are allergic to your own body.” Now, bless his heart, does that sound like a suggestion of RA without saying it? A long time later I was able to get chart copies and saw that he had also tested for RA… but I am seronegative. Other doctors down through the years have done the same thing in the same way, all without honestly facing me and telling me what they suspected. Why? Why are so many Internists (GP’s seem to call themselves this today; I do not know if all of them are qualified to claim that title or not) averse to diagnosing a condition whose signs and symptoms are so well known, and sharing it with the patient?

Over the next ten years, there were many in and out of remission experiences, some of them quite bad. I was forced to discontinue Water Aerobics (which I loved) when my knees swelled up like Nerf footballs.

I wrapped them and stayed home with the kids. I think I must be really fortunate that there were so many times of remission, or I would be in worse shape than I am now.

One day I woke up and could not turn over, the pain was so bad. Every joint in my body was screaming, and the pain and the fatigue were so intense that I was reduced to a fetal position for days at a time. I called the doctor, but could not drive the car to get in to see him. When I did, he tested for Lyme disease, but by the time he tested I would have been in the second or third phase of the disease and tested negative. (Yes I did have a bite from something while visiting in S Dakota 4 months before, with a bulls eye rash et all, but I was the only one who had seen it.) Then he refused anything for pain other than Tylenol “because you will become an addict.” This is the doc who finally X-rayed an ankle that hurt so constantly and severely that I wondered if there was a fracture—it showed nothing abnormal. He finally referred me to a rheumatologist who diagnosed Fibromyalgia, stated firmly that he did not think I had RA, and started me on Plaquinel and Effexor, and left town. Permanently. It took me seven years to find another rheumatologist who would take patients on military insurance. Two weeks to find another GP.

By this time, I began to request an MRI; no luck, no comment, just ignored; until I began falling down.

I was having so much trouble walking a straight line, and then boom, no sense of balance; and the migraines of my youth were back in force. I had green and purple bruises on both knees, I fell in the garden and chipped my front teeth (didn’t even know I had hit them that hard). Finally, I was referred to a Neurologist who ordered a head MRI, then put me on a very strong med for what he termed “uncommon migraine,” and I nearly died from an interaction with the Effexor and Plaquinel I was on. Thank God for an alert pharmacist.

Next thing I knew I woke up one morning in 2007, and couldn’t walk; the pain in my lower back, at L- 4/5, and down my right leg were excruciating. A new neurologist discovered congenital narrowing of the spine and trapped nerves complicated by arthritic damage to the bone. This was confirmed by more x-rays and the extensive MRIs done by the 2nd rheumy which showed moderate to severe damage typical of RA. Voila! All these years and they finally do an MRI at 69 years of age…Well, the surgery was a success; I have not had the spinal pain and nerve pain since, I now have rods in by back, so I hope I do not need any more MRIs. My dear neurosurgeon has moved to another state, so I hope I do not need that kind of help again, and I saw a new rheumatologist two weeks ago.

 He decided to, “Treat your fibromyalgia first.” (Sound familiar?) “…Before we treat the RA.” Now I am in the process of increasing Lyrica, 50 mg up to four a day. If I had ‘balance’ problems before, you should see me now. And brain fog? I am reluctant to drive, which means being totally isolated until I see what this stuff does to me after I reach the full dose and have been on it a while.

I hope my story can help others comprehend the effects of autoimmune diseases. It’s been 7 1/2 years since my RA diagnosis, and I am still seeking ways to deal with it. I accept the fact of the disease, I Just need to stay creative in how I deal with the limitations.

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