Linda’s Rheumatoid Arthritis story
Nancy T’s Rheumatoid Arthritis story
Chessiegirl’s Rheumatoid Arthritis story
This is Linda’s onset of Rheumatoid Arthritis story, in her own words.
My onset story began in the middle of October, 2010, when I had just realized a goal that I had thought unattainable. After beginning violin lessons at 58, I had just been accepted into our community’s symphonic orchestra. Because one of my granddaughters has a metabolic disorder, rendering her fragile, and cannot have a flu immunization, I had a flu shot. I would be in close proximity to many people during rehearsals, and I didn’t want to risk bringing the flu to this fragile child.
Five days after that shot, I developed a slight sore throat and upset stomach which I attributed perhaps to the flu shot. The next morning, I woke slammed with flu-like symptoms except for the typical congestion. As that day went on, I felt increasingly worse. It was as if I could feel fire running through my joints, veins and arteries. My blood pressure was climbing. I felt unable to think clearly. My hands, feet and ankles tingled. By the next morning, my blood pressure was so high that my doctor’s office required me to go to the ER, where my blood pressure measured 232/120.
After treatment with a blood-pressure lowering drug, I was sent home. Within two days, I woke with vertigo so violent that I couldn’t walk without holding onto the walls. I had migraines. That began a progression of tests and visits to a cardiologist and then to a neurologist. The cardiologist didn’t believe that I had cardiovascular disease but rather was having a rare reaction to the flu shot that he has seen in other patients. Some slight neurological changes were apparent. After taking my history, the neurologist said she would be testing for B12 insufficiency and autoimmune disorders, either of which could cause some of the symptoms I was describing.
A few days later, news came back that I had a positive ANA and a high Rheumatoid factor. She referred me to a rheumatologist. She asked if I had been having any joint problems. I told her no. Then, that night, as I put a heating pad in the microwave to warm up so that I could place it beneath my aching hip so that I could sleep, I realized that of course I was having some joint pain. I had attributed my sore fingers to my age (61) and to the hours of practice I was putting in since joining the orchestra. I thought perhaps I had injured my hip. I hadn’t mentioned either to my doctors. Before this illness had hit, I had been jogging 3-4 miles a day, five or six days a week, and had been riding my mountain bike on single tracks and kayaking down the Colorado River for hours at a time, none of which I could do any longer.
In that one week in October, my life was utterly changed. Many days, I can’t drive. I work as a writer, from home. If I weren’t working from home, I would not have been able to continue working. The fatigue has been too overwhelming, and if I try to push past it, I grow so uncoordinated that I stumble and fall. The migraines made it difficult to work, too. I began losing weight rapidly without extra efforts to lose weight.
All these visits took many months, but in late April, 2011, I saw the rheumatologist for the first time. He also said that he thought the culprit was the flu shot, as he’d also seen this rare reaction. However, since my fingertips also turn blue when temperatures dip and since I was experiencing some morning stiffness in my hands, he thought that further tests were warranted. The first week in May, 2011, my anti-CCP antibodies came back at 165, and within days, I was on methotrexate. The rheumatologist warned that I needed to consider starting with this DMARD, because high anti-CCP levels indicated a more aggressive RA that needed to be addressed before joint damage occurred. He offered prednisone, too, to tide me over until the methotrexate’s effects could kick in, but I refused that.
Since my diagnosis, a visit to the dentist for crowns resulted in several weeks of intense jaw pain that I suspect has something to do with the RA although the dentist doesn’t believe that to be true.
In addition to this atypical onset, I had another reason for not worrying about RA. In 2001, I had begun having some joint pain in my hands and had been referred to a rheumatologist. All tests came back negative, and she thought I was likely having a transitory reaction to an illness. The joint pain went away within a few weeks, as she had said it likely would. A few years after that, an ophthalmologist I had seen for what I thought was pink eye said I had uveitis, but again tests for an autoimmune disorder came back negative.
This sudden onset of RA was probably not sudden at all but something I’ve had for many years without the numbers showing up and without being diagnosed. I probably did have serum sickness, a reaction to the protein in the flu immunization, and that must have triggered a flaring of the RA I didn’t know I had.
Before this began happening to me, my 31-year-old daughter was tentatively diagnosed with an autoimmune disorder and put on one of the anti-malarials. Her rheumatologist said that blood and other tests often don’t show up for a while, but that as the disease progressed, they would be better able to hone in on what exactly was going on with her. Unlike with me, she was presumed to have an autoimmune disorder. Raynaud’s has done some damage to her toes, for example. Sadly, after my diagnosis, the rheumatologist we share now suspects that she, too, has RA.
It’s too early to tell yet how much difference the methotrexate will make, although in the last few days, I think there may be some slight improvement. Before that, the clumsiness in my hands had progressed to the point that I considered dropping out of the orchestra, just months after I finally realized this goal. I often can’t cut up vegetables or fruits and have to ask my husband to do so for me. I drop things. I stumble. I still often can’t drive. The fatigue may be slightly better, but I think that’s because I’ve learned better to pace myself. Now that it’s warmer, I think longingly of my mountain bike and my kayak, hanging on their racks, wondering if I’ll ever ride another single track or kayak down the river again. More importantly, however, I wonder how this disease will impact my daughter. I am determined to live the fullest life I can, showing her that she can do so, too.
This is Nancy T’s onset of Rheumatoid Arthritis story, in her own words.
I have lived a very nice life from birth to age 65. I have heard tell that trauma can trigger the disease process and I am sure it is true; but, there has been no real emotional or physical trauma in my life with the exception of a few injuries from my horse experiences, and a few joint issues such as stepping off a chair wrongly and tearing an ACL ligament in my knees. I have worked hard and played harder enjoying life, people, and animals. Being a country girl at heart, I have worked on our own ranches and farms helping with the physical labor and enjoying the fruits of working with horses for the last 20 years since retiring from a work career in the art industry. My husband and I have been married for almost 40 years and we have no children to complicate life.
About 10 years ago, my lady GP, a very astute woman, decided to test for Rheumatoid factor to see if the reason my OA was intensifying, came from something else. I have a high pain tolerance, but was taking over the counter Tylenol and ibuprophen in significant doses to relieve my daily pain. I thought it was just a result of my very active physical state working full time with horses. She was also managing my ACL knee repair and then the other knee torn meniscus repair. I have always been flexible of joint, but now came Baker’s cyst, swelling, and loss of flexibility. I guess my knees were affected first, followed by my hands and feet.
We made a move from North Carolina back to our native California in 2004. I had just been confirmed to have the Rheumatoid factor prior to leaving North Carolina, and it was recommended I seek out a rheumatologist in California for treatment. The move was very stressful both physically and mentally which brought on a major flare. Transitioning to a new lifestyle (still with horses, but on a smaller scale) and getting settled in a new place was difficult. I did more physical work than usual moving furniture and my wrists became unusable and extremely painful. I could not sleep and pain was unrelenting. Carpal tunnel surgery was done on the most severely affected right wrist to relieve the pressure on the nerve.
I began treatment from my rheumatologist using prednisone to get past the flare and methotrexate to address the RA. I have only taken methotrexate over the last 7 years and although it has been increased to 20mg./weekly, I am doing well. My hands and feet show deformity, but are usable. My sed rate was 30 in the beginning and now consistently hovers around 6. My liver enzymes have only increased once and I added milk thistle to my supplement program to help keep it cleansed. I feel I am under control and my rheumatologist is conservative which is fine with me. Aleve works best for me if pain needs to be dulled, which might be once a week or so.
Life is good and the reason so for me is I am retired from pressures of working for someone else. I have a very supportive husband who is sensitive to my issues and limitations. I do the best I can with what I have and am happy with life. I wish it to everyone.
This is Chessiegirl’s onset of Rheumatoid Arthritis story, in her own words.
I have had bursitis in both of my shoulders for a few years now. Typically I get bursitis flares a few times a year. No biggie. I could take a prescription anti-inflammatory for a few days and be done with it.
In January of this year, I woke up with what I thought was a typical bursitis flare. Only after a few days it didn’t end. A week or so later, my arms were going numb from my fingers (all of them) to my shoulders, although the right side was worse than the left. It felt like the numbing-tingling feeling you get with Ben-Gay or Mineral Ice. In addition, when they weren’t numb, my wrists, fingers, shoulders, and sometimes my elbows hurt. It felt like barbed wire was being run through my fingers and around my wrists, and an ice pick was being used in my shoulders. Getting ready for work was the worst part of my day. By the time I left the house, I just wanted to crawl back in bed for a nap and a cry.
My fingers were stiff until about noon (wake up at 5:30am). The pain would also start first thing in the morning and last until about noon, at which point it would “ease”. Most days “ease” meant decreasing. Some days it meant completely gone. Then about 5pm or so, the pain would start back up. Again, barbed wires going through my fingers (from knuckle to middle joint) and around my wrists, hammers tapping on my knuckles. During this time, everything hurt…washing my hands, lifting the laundry detergent bottle (too heavy!), opening jars, holding on the steering wheel of my car, etc. I also could not touch my thumbs to my palms, cross my fingers, or snap my fingers, and not just because of the pain…I literally could not move the fingers into those positions. I also could not bend my wrists all the way forward. I only had about 15 degrees of movement. My darling hubby got very used to ducking whenever I was holding something in my hands, as things tended to go flying around the room. I almost resorted to tying a rope around the soap bar in the shower because I dropped it so often. I think I spent more time picking it up then I actually used it.
So, I made a call to my PCP. She sent me for an MRI on my C-spine, which showed a bulging disc in my neck.
Next stop was a neurosurgeon who said that the disc was not impinging on the spine, so he wanted me to see a neurologist in his office, along with starting PT for my neck, thinking it was carpal tunnel. I have had carpal tunnel before, and what I was feeling now was like carpal tunnel on steroids. After a nerve conduction test, the neurologist could find no nerve impingement…anywhere…not in my wrist, my elbow, or my neck.
Back to the PCP I went. At this point, a month and a half into my constant pain, I started doing a bunch of research. Having ruled out the disc and nerve issues, all signs pointed to RA. PCP was leaning more towards sending me to an orthopedist, but I pushed a little and she agreed to send me to a rheumatologist (I need referrals from my PCP to see a specialist). She also sent me for hand x-rays. I was able to get in to see the rheumatologist within a few days (they had a last minute opening I jumped at). At this point, it is early April.
The rheumatologist asked me how this all started, looked at my hands, and said he wanted to run some blood tests. Luckily my hand x-rays showed no damage. At this point, he diagnosed it as “inflammatory arthritis” but said he suspected Rheumatoid Arthritis. A month later, I went back for the blood test results (early May). He said my Rheumatoid factor and anti-CCP were “negative”, but my sed rate, CRP, and neutrophils were elevated. I asked “So if Rf and anti-CCP are negative, what do I have?” He said that 25% of early RA patients test negative for Rf and anti-CCP and he thinks that I fit into this category, especially since I had “classic” physical symptoms and my inflammation blood markers were so high. I had sero-negative RA, and so the treatment started.
I have now been on Plaquenil for a month, prednisone for 2 months (every time we try to “wean” me off, my pain and swelling start coming back within hours), methotrexate, along with Tramadol and Meloxicam.
I can now touch my thumbs to my palms, snap my fingers, and cross my fingers…on good days. Morning stiffness is down to a minor level (almost unnoticeable). I seem to have good days for a week or week and a half and then flare again. I think part of this is trying to learn my boundaries. I discovered yesterday that baking is a difficult task now. My hubby had to help me make cupcakes. I still have some pain almost every day, but most good days it is only enough to break my concentration from whatever I am doing for a few seconds and then I can move on.
On the down side, it seems like my big toes on both feet have decided that they are tired of my hands and wrists getting all of the attention and so they have started to hurt…more barbed wire. I am also struggling with the difference between “giving in” and “adapting”. I spent a couple of months mentally debating whether or not buying an electric can opener would be “giving in.” I finally decided that giving in or not, I cannot use the manual can opener anymore so I really had no choice.
I have to be more closely monitored than usual on the methotrexate because my AST liver enzymes were elevated. My PCP believes that this is due to the anti-inflammatories I was taking. Apparently I was doubling what I should be taking. The levels have come down since then, but are still above normal. If they start to rise, I have to come off the methotrexate. I think the rheumatologist only started me on it because I pushed a little. I think he is very nervous about the liver issue, which I understand, but I want to do whatever we can to treat this. I have to have blood work in a month to test the levels and then see him a week later.
By the time I saw the PCP the second time, I was so tired of being in pain all of the time, I actually wanted it to be RA….at least I would know what it was and I could start treatment. Now, well, you know the story…be careful what you ask for! Most days I am ok with this. After reading so many stories, I realize I am very lucky. We caught this after only a few months, as opposed to the years so many people have had to wait in excruciating pain before being diagnosed. There is no damage yet (as of last April anyway). I am still functional (most days). So many others aren’t. I also have a rheumatologist I like (have only seen him a few times so I can’t get to I LOVE HIM yet), a husband who could not be MORE supportive, and a management group at work who are very understanding. I spend most of my time at work on the computer and they have agreed to purchase voice recognition software for me. Granted, I am definitely more than just a “worker bee”, but I was pleased at the reception I received. They also stated they would do what they needed to work with my dr appointments and limitations. Additionally, I have found others at work who have lupus, sarcoidosis, and fibromyalgia. We have formed an informal support group amongst ourselves.
My husband is also learning on his own not only from people he works with who have RA themselves, but there are some whose spouses have RA. Among all of these people, he is learning what he can do for me, including letting me find my way on my own when appropriate. So many others have no support, so much damage, and so much pain every day. When I start to feel sorry for myself during a flare (or when I accidentally take my prednisone several hours late and spend 4 days in excruciating pain… luckily I learned my lesson after the first time), I remember how much worse it can be. I do still wonder what the future holds. My worst fear is being unable to care for myself, but I try to use that to motivate me to make the appropriate life-style changes that will maybe “help” this journey, like losing weight, eating healthy, and quitting smoking.
Thank you for listening.