Your Rheumatoid Arthritis Onset Stories, page 25 | Rheumatoid Arthritis Warrior

Your Rheumatoid Arthritis Onset Stories, page 25

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Barbara’s Rheumatoid Arthritis story
Leigh Ann’s Rheumatoid Arthritis story
Lisa’s Rheumatoid Arthritis story

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

About 13 years ago I started having trouble walking in the morning. I would get out of bed and hobble for the first hour I was up, and that was early. At the time I was a VP at Merrill Lynch and a single mother. I didn’t have time to worry about something that seemed to fade as the day went on. Never mind that it was happening almost every morning.

After September 11 happened, I took a package, semi-retired and moved upstate NY to be near one of my sons and his family. I got a job in an office since I was not well off enough to fully retire at 51.

Then one night about 7 years ago I woke up crying from the pain in my one shoulder. I called in sick and dealt with the pain. The next day I went to work with a sling on my arm, hoping that if I didn’t move it the pain wouldn’t be too bad. Like I could really move it. It was horrible to even get dressed in the morning. (Now I never buy anything that has to be slipped on over my head, only button up blouses.)

It took about a week for it to stop. Then a few weeks later I woke with the same intense pain in my other shoulder. This time I called my primary care doctor and went to see him. Now I like this man, but he said it must be a rotary cuff tear. I also told him that BOTH times this happened I had a fever. He gave me some exercises to do. When it happened a third time (it jumped back to the original shoulder), off I went to the doctor again. Now he ordered an x-ray, telling me that sometimes lung cancer can cause a pain like this. Great. Of course he felt it must be frozen shoulder, but wanted to check out the cancer thing.

Thankfully (or maybe not) the x-ray showed nothing. So after researching online, I made an appointment for a rheumatologist. Good thing, as my primary seemed to have no idea what was going on. Turns out my Rheumatoid factor was 207, my SED 60 and my C reactive protein 5.1. As the rheumy said, even without my story the tests would tell him that I had RA. Due to my insurance I had to spend a year on methotrexate and prednisone before starting Enbrel.

Today I take one shot of Enbrel and one shot of methotrexate a week and seem to be doing ok, or as ok as I can. I still get flares, but I will not let this thing win. Sometimes my fingers ache so badly, and upstate NY can be very cruel in the winter. Some things are not as simple as they used to be.

Too bad that 1) I didn’t realize that what was happening to my feet was just the start of something bad, and 2) that my primary was so ignorant of the symptoms of RA.

Now my biggest worry is: Did I somehow pass this gene down to my sons and my granddaughter?

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

Shortly after I turned 20 years old I started to have some pain in my right index finger. I ignored it for a while, but then I was at work and I was having hard time holding on to things and I decided to first go to student health services at my current college. With the student health insurance, you have to start there and get referrals. After visiting there they had no idea what was wrong and told me to go to a doctor’s office. 

I ignore it for a little while longer when I just got off of spring break and I was trying to take notes in my class and I realized I could not hold a pen and write. Later on I went to urgent care at my doctor’s office and they told me they thought I had a cold that settled in my joints. I thought that was a little off, but they did some blood work and I made an appointment with my family doctor.

When I went to my appointment they said they thought I had possible RA and they were sending me to a rheumatologist. I really did not know what RA was, but I didn’t really freak out about it and then when I showed up for the appointment 4 months later. The diagnosis at the time was Lupus and I really didn’t know what Lupus was either. They did more blood work and a few weeks later I was checking my messages on my phone and they told me on my answering machine I had RA.

At my second appointment, he explained that it was a slow moving disease and since we caught it early everything should be fine – that was in June 2006. Fast forward almost 5 years I am currently 25 years old and I am already on disability and all the meds we have tried have failed. The one they want me on with the patient assistance program and insurance I still cannot afford. The place that I worked at wrote me up as too slow and told me if I could not walk faster that I should look for a different job. I went on a medical leave of absence and I applied for disability March 10th 2010 and I got approved by the end of April 2010 two weeks before my college graduation. So far that is my story even being diagnosed early did not help.

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

My first thought that something was wrong was when my engagement ring was getting tighter. I knew I hadn’t gained any weight. In fact, I had been trying to lose weight for my wedding. This was around August of 2010. By October, I couldn’t even squeeze my ring on for family occasions and, of course, all sorts of rumors and questions started flying around. Were we still engaged? Were we broken up? That was a pretty big blow, emotionally. I LOVE wearing my engagement ring because of what it symbolizes. Now it is collecting dust because I can’t wear it. My fingers are too swollen.

By November of 2010, my left hand was swollen almost permanently. By December, my right hand and left hand were taking turns swelling up. Some days, they’d swell so much that it would pinch my nerves and my fingertips would tingle. I started losing my ability to grasp and hold on to things, even things that weren’t very heavy. I was becoming easily exhausted, and every few days I would run a low grade fever.

I had gone to see my primary MD a few times during this time period. He saw the swelling, but didn’t think it was very serious. He attributed it to me gaining weight. I am overweight to begin with, and he has been trying to strong-arm me into weight loss surgery, but I have refused because I see surgery as a cop-out. What I need is a dietician, not a surgeon – but that’s another story.

I should probably mention that I have a few other diagnoses as well. I have both an anxiety disorder as well as a panic disorder with agoraphobia. There is some depression there as well, as I mourn for the active life I used to lead and learn to accept the fact that my 3 year old is going to grow up with a mommy who can’t take her places because of the horrible panic and anxiety attacks. So far, none of the 8 medications I’ve been given have helped, and therapy has only been minimally successful. In the fall of 2009, I had a cardiac ablation for atrial flutter. I woke up one morning with my heart beating so hard, I could feel it in my toes. I went to the ER with a heart rate of 266. The following day, I had the ablation and 2 days later, I was discharged on heart meds to help keep my heart rate regulated.

To this day, they still can’t tell me what happened, other than I had an extra electrical pathway in my heart that stayed dormant for 33 years and then decided to act up out of the blue. I have a touch of arthritis in my left wrist from when I broke it as a child and 2 herniated discs in my lower back, presumably from being overweight all my life. I’m also seeing a GI specialist to rule out an ulcer.

Anyway, my doctor kept blowing off the swelling and pain in my hands. He kept telling me that the pain was all in my head, stemming from my anxiety disorder. It wasn’t until I threatened to report him to the licensing board for failure to treat a patient that he decided to do a blood test. I think he did that to shut me up, more than he did it because he felt it was the right course of treatment. My blood test was fine, except for a little anemia, which he blamed on my menstrual cycle…which had ended 2 weeks before the blood test. I told him that wasn’t good enough and he needed to keep digging because I could no longer pick up my daughter, fasten her car seat clips, or carry anything that weighed more than a few ounces. Again, I ran through my symptoms of pain and swelling, and he decided to do another blood test for arthritis. This one came back elevated for inflammation so he referred me to a rheumatologist.

Because I have Medicaid, it was difficult to find a rheumatologist that accepted my insurance. Despite the fact that I live in a major metropolitan area, I have to drive almost an hour to see my rheumy. And he is a TOTAL jerk. He treats me like I have the IQ of a dust bunny. For 4 months, I suffered in pain because every time my MD faxed the referral – which was required before I could even make my first appointment – they’d lose it. I had to go to my MD’s office, pick up the referral, drive it an hour to the rheumatologist to drop it off, and then make an appointment for a later date. He didn’t have an opening for a new patient for another 7 weeks.

My first visit, all he did was blood work. He pretended to take my blood pressure and listen to my heart, but given the fact that the stethoscope never actually touched my skin when he put it there, I have no idea how he was able to do either one. He was in the room for all of 3 minutes. A week later, the nurse called me to tell me that I didn’t have RA because my rheumatoid factor was negative. I asked “So how does that explain the pain and swelling in my hands?” She told me that maybe I had broken both of my hands and didn’t realize it. Uh-huh. Ok. I demanded to speak with the doctor and told him that I am not stupid and that if I had broken both of my hands without any actual injury, he better call the Guinness Book of World Records. He sent me for hand/wrist x-rays and those came back normal. I went back and told him “Something is going on. You need to keep looking and I’m not going to stop being a pain in your ass until you find out what’s wrong.”

He ordered a nuclear bone scan. That came back with inflammation in all the joints of all 10 fingers, plus the wrists and both elbows. I wanted to shove the results in his face and yell “I TOLD YOU SO!!!!” but I didn’t. I just asked what the next step was. He ordered another blood test, and my SED rate was at 38. He told me “Oh, it’s only 38. It’s not that bad.” and gave me some Relafen. He also drew more blood for a Vectra DA test. When I asked him what that was, he got annoyed with me and said “It’s a blood test that will tell me which kind of autoimmune disorder you have. Since your Rheumatoid factor was negative, I need something more definitive before I diagnose you with RA.” I asked him if he thought it was RA and he said yes. I filled the prescription, only to find out that Relafen is an NSAID, which I can’t take, per my GI doc, because it has an increased risk of causing stomach problems and bleeding ulcers and sudden cardiac death, which I’m sure my cardiologist would just love. The rheumatologist got annoyed when I called him and told him I couldn’t take the Relafen, and asked if he had read the medical history I had filled out, which explained my ulcer issue, heart issues, etc. He ignored that question and told me that he wasn’t going to give me any more prescriptions until he got the results of my Vectra test back, which takes 2 weeks.

So now I wait, with a “most likely” diagnosis of RA. My hands are still swollen and in pain. I now have pain in my fingers, hands, wrists, arms, elbows, shoulders, neck, left foot, and right hip, as well as little pimples that come and go on my fingers/hands. It takes me about 3 hours to get moving in the morning. I am constantly exhausted and wanting to sleep. I run a fever 4 days out of 7, and hugs from my 3 year old feel like every bone in my body is being broken simultaneously. My primary MD is still convinced that this is all in my head, since my Rheumatoid factor was negative. And I have no meds to take to help the pain and swelling, not to mention lessen the damage that has been going on for 8 months now. I can’t help but wonder which factor is the biggest contributor to me having such a hard time: the fact that I’m on Medicaid, the fact that I have a mental health diagnosis which makes all my doctors think I’m making everything up, or the fact that my rheumatologist is a jerk. I never imagined I’d be on this kind of roller coaster and be in this much pain at the age of 35. It’s very depressing.

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6 thoughts on “Your Rheumatoid Arthritis Onset Stories, page 25

  • April 10, 2012 at 1:00 pm
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    Mini update: After doing some research on the Vectra DA test, I found out that it does NOT tell the doc which type of autoimmune disorder I have. It is used as a baseline and comparison to show the progression of autoimmune disorders. When confronted with this information that I got straight from calling the 800# and talking to the makers of the Vectra DA test, the rheumy refused to talk to me. I never went back to him.

    I have also won a case for SSDI based on my heart disorder, anxiety and autoimmune disorder combined. Thankfully, now I have an income. Hopefully I will be treated better as a Medicare patient than I was as a Medicaid patient.

    I recently found a new rheumatologist who seems to be very well-respected. It is an hour’s drive into downtown Chicago which will be tough for my anxiety, but I am willing to do what it takes to start feeling better. It’s rather embarrassing to not even be able to hold a fork and have to have your 4 year old feed you your dinner. But the wedding is in almost 1 year exactly and I WILL wear both rings if it kills me!

    Reply
    • April 23, 2012 at 10:17 pm
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      Hi Lisa,
      Ask your new rheumy to do a bloodtest called Anti- CCP. It’s a newer bloodtest that is more of an indicator of RA (something like 95% of people positive for Anti-CCP have RA, whereas you can test positive for Rheumatoid Factor and not necessarily have RA). They’re beginning to use this test more often – it’s now part of the new standards for testing. It’s useful when a person appears to have RA but the tests are not backing it up. Sometimes the anxiety/depression issues are due to the disease itself or other auto-immune diseases (hashimotos). Good Luck!

      Reply
      • April 23, 2012 at 11:06 pm
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        95%? Mine is negative. Rheumatoid Factor still negative. Vectra DA test shows I am still dealing with moderate RA on my current treatment, interesting test. Will be interesting to see if it does get lower as I feel better or go higher when I don’t.

        Reply
  • April 29, 2012 at 3:06 pm
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    Just a note for Lisa – you’re right, the panic/anxiety disorder makes it easier for them to blow you off, medicaid patients often don’t get the same quality of care that privately insured patients do and, yes, your rheumatologist is a jerk. Keep standing up for yourself. Calmly and patiently demand the quality of care and attention that you know you deserve. Be persistent. He could help you with a prednisone bridge – ask. If you have any options for another rheumatologist you might seek a second opinion. Good luck to you!

    Reply
  • July 10, 2012 at 7:38 am
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    I feel for you. I have been through almost the exact same things! I was treated like it was all in my head also cuz the blood tests came back normal. But 6 years later, its positive. I wish I could bring results to UMC (charity hospital) and say, “look, it’s not anxiety!”. I’m beyond frustrated with the way I have been treated! I can’t afford a Rhuematologist either

    Reply

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