Pamela’s Rheumatoid Arthritis story
Cathy’s Rheumatoid Arthritis story
Connie’s Rheumatoid Arthritis story
Krista’s Rheumatoid Arthritis story
This is Pamela’s Rheumatoid Arthritis story, in her own words.
On Christmas Day 2007, I woke with a bit of a sore throat – nothing major but thought maybe was catching a bug. By noon I had that “swallowed and ice cube” feeling in my chest and thought – oh great a chest cold. By 2:00 that afternoon I had a fever of 104 and a horrible cough. The day after Christmas I was diagnosed with Clinical Pneumonia. At the time I thought I felt worse than I have ever felt in my life. Little did I know that I was about to realize that it is very possible to feel worse on a consistent basis.
On the night before New Year’s Eve, 2007, I woke around midnight with the most excruciating pain I had ever felt in my right shoulder. I could not imagine what I had done while sleeping that could have caused it. Initially I thought maybe from all of the coughing with the pneumonia I had ‘pulled’ something. As the night progressed, as did the pain, I was really scared because I have had broken bones, sprains, surgeries but never had I had anything this painful with no position being comfortable.
Then I had one of those ‘light bulb over the head” moments – and it was OH NO – as my sister has been suffering with RA for many years. I remember her talking about her first flare up – which was also a shoulder and how painful it was, how she could not get dressed, or move her body because everything made the shoulder move. By the evening the pain had subsided quite a bit and I went to our yearly New Year’s Eve party.
New Year’s Day I hurt but was able to live with the ache since it was not as severe. By 10:00 that morning my left wrist developed a huge lump which was red and hot. I could not bend my wrist or use that hand at all. This stayed with me for several days. I knew in the back of my mind that it must be Rheumatoid Arthritis but decided that maybe it was just after effects of the pneumonia.
The next flare up changed my mind. As it was another shoulder flare which I have found to be THE most painful place to have one, I went to my GP had blood work done and was called the next morning with the news that my CRP was really high. The nurse said – now this doesn’t mean you have RA but we want to refer you to a Rheumatologist. He immediately told me that I have RA.
I started on prednisone and naproxen along with methotrexate. This worked until I had a severe attack of gall stones and had to go off the meds for surgery. That was in July of 2008. After the surgery when I started back with the methotrexate only and the others if I had flare ups it no longer helped. Then as you all know how it goes – the dosage was increased, which worked for a while. Then it started making me so ill that I had to decrease again which still made me ill. Enbrel was added which at first made me feel so much better. But again as you all know, that didn’t last.
The longer I have RA the more pain and the more questions I have. I am now on Laflunomide and Enbrel which seem to keep the major flare ups to a minimum, however they do nothing for which you so correctly named ‘leftovers’. For the leftovers I am on pain meds, which make the pain bearable but do not ”take it away”. I still am stiff and in pain every morning for at least an hour. Some days I hurt so much that getting out of bed feels like the equivalent of running a marathon then lifting heavy weights. The fatigue wipes me out; the pain makes me unable to focus on much of anything else.
The frustration of not being able to be active as I was all my life is almost as bad as the symptoms. When I was first diagnosed and read and researched I have to say I was still very ignorant for quite a while. I had major flare ups but before the major stiffness and everyday pain had set in I could not understand why I kept reading that many patients chose to have a therapist – hey you have a flare up, it gets better, then you get on with your day. NOW I get it, now I see how the frustration and the depression can slowly creep into your mind as the disease creeps through your body.
I am on intermittent FMLA at work, which my company thankfully has, but I still get the ‘look’ and ‘attitude’ from many people. They cannot comprehend how painful and how debilitating this wretched disease can be, nor do they understand that this is not Osteoarthritis and want to give me ‘remedies’ and remind me that I need to ‘keep moving’.
As I am sure others with RA know it is hard to hide the pain when we have bad days. People at work know when I am hurting and offer platitudes, but they don’t ‘get it’. There are 2 other people I work with that have mild Rheumatoid Arthritis and even they sometimes act as if I am exaggerating. It is such a strange disease and so hard to explain to people who do not have it. As I make my living typing all day, answering emails to a Fortune 50 Company, there are times that I just cannot do my job. It is too painful but it is also impossible to make my fingers work. People also don’t understand how I can feel good in the morning when I come in sometimes, and by lunch I am in so much pain that I have to leave.
Luckily I have the most patient man alive right beside me. He understands more than most non RA people and is so helpful. I am so blessed to have him. After almost 2 1/2 years living with RA, even I sometimes don’t ‘get it’. I am tired all the time, I am tired of it all the time, and I just want to feel good even a few days a month. When I do have a good day I usually overdo it because I am afraid it won’t last and I want to squeeze as much as I can out of that good day.
I have not yet read the stories on the site as I wanted to write mine first and then read the others. I have read many RA sites, from blogs to ‘medical’ sites and I must say this is the first one I have found that has covered every issue, has answered 100% of my questions and has let me know that I am neither “lazy” nor un-motivated; nor am I alone.
I am also glad I live in Arizona. I can’t even imagine living somewhere that is really cold in winter or damp or wet. Even the limited change in weather here makes a difference in how I feel. The only place where I haven’t had flare up or felt really bad is when visiting my mother in law in Hawaii – is this mental? I don’t think so but we go every year and it as been that was for 3 years, 2 weeks with no flare ups but the ride home from the airport which is maybe a half hour ride – a wrist flare up. From the flight, the weather, or from carrying my bag I don’t know.
Please edit this as you see fit, I just wanted to thank you for the time you have put into this site and for making it understandable for people with RA and for those who do not. Thank you for allowing me to get my story off my chest as well.
This is Cathy’s Rheumatoid Arthritis story, in her own words.
Hi. I wanted to share my story. I do believe that everyone is different there is no such thing as a “textbook” case.
I had my first RA test in 2001. I was told it was negative and I had severe Fibromyalgia. I was also told that Fibro can be “turned off” with the rights meds and it shouldn’t bother me too badly. When Cymbalta didn’t help, they tested me again for RA in 2003. Negative also. This was Dr #1, my primary care physician, in a rural area.
Since 2002, I have had my feet and hands X-rayed multiple times. I would have some swelling and a lot of pain, but no broken bones or obvious signs of injury. I asked for a podiatrist referral because I thought my toes were “twisting.” I could not get a referral for toe pain from my insurance. The Dr thought the redness and pain was from “inflamed cuticles.” Not kidding. Clinic # 3, primary care after I moved to a larger town.
I got whiplash in an accident and 2004; my neck pain has been constant since then. I even tried a “pain management clinic” in 2006 to get relief. Dr # 4, this time a specialty clinic.
When the epidural injections didn’t have miraculous results I was told it was nerve damage sent to a neurologist. Wound up getting switched to yet another one in the practice half way through. This Neurologist decided I had “migraine neck aches” and told me it was my diet. He also tested me twice for Carpal Tunnel and seemed disappointed the results were negative. He said Carpal Tunnel would have explained the pain on both hands and my feet??
This was 2007; I was no longer able to work full time and could barely function. Dr # 5 & 6, a Neurologist Center in DFW area that it took 7 months to get into.
We were in a major car accident during this time & the pain was so severe at times that I couldn’t move. Yet I kept getting told there was nothing wrong with me. At this point I thought I was losing my mind.
I had to quit working at all in 2009 after 2 hospitalizations with MRSA. I could not get well. I am allergic to a lot of the antibiotics used for Staph & only I.V. meds worked. I had also asked repeatedly for a Podiatrist referral here. Medical Clinic # 7, primary care after we left the DFW area.
I had been asked numerous times if I had an auto immune disease – Fibro didn’t count in their eyes. I lost count of the number of tests run, but since the RA kept coming back negative it couldn’t be RA.
May 2009. I woke up with my right hand so swelled that I could not move it. The left hand was just extremely sore and a little puffy. It was a Saturday, and my husband was out of town, so my mother took me to an Urgent Care Clinic. I was examined by several doctors because they were convinced my hand was broken along my joints. I had yet more blood work and went home with anti-inflammatory and Darvocet. This Urgent Care Walk in Center saw me several times while running more blood work, again saying it was RA negative. BUT – they managed to get me a referral!!
It took nearly 6 months to get into this Rheumy – but it was worth it. I am serum negative but positive on 5 other aspects of RA. (I think that’s right.) My inflammatory counts are high, and my blood count is low. I stay mildly anemic.
The Rheumy was shocked when he saw my toes, he gave me injections that day they were so painful. My feet, ankles, shoulders, several vertebrae in my neck and finger joints are all damaged. I am now on Plaquenil & have recently started Methotrexate. The pain is less, the fatigue is more manageable and the joint damage has slowed.
I love this Dr. I was told he was the best if I could get into him. I only wish it hadn’t taken years. His office calls and checks on me every couple weeks, and wants me to call them with any questions, concerns or new pain. My rheumy is less than 2 hours drive from where I first started trying to get help. We moved 700 miles away at one point, saw “big city” specialists, and got the run around.
I can’t explain my frustration knowing how badly my toes are damaged, after asking for referrals several times over the years. I have thought about writing letters to my previous Drs with serum negative info included. I think this needs addressed!
This is Connie’s Rheumatoid Arthritis story, in her own words.
Rheumatoid Arthritis is so baffling to me, and frustrating, of course.
I never put 2 and 2 together until I discovered you. My confession is as follows: I had excruciating pain and swelling in my left great toe for months. As an R.N. (and I rarely share that, because you do get treated differently …not in a good way), the 1st thing I thought was gout. Big toe plus pain equals gout.
Not true! I now believe that was the 1st indication of my Rheumatoid Arthritis, about five years before my diagnosis. Never gave it a thought at the time.I was seeing a rheumatologist for fibromyalgia. I went through the years of “female means neurotic” dismissals, until I found a great rheumy in Boca Raton, Fla. I’ve been to the other nightmare docs too.
He discovered that I had Sjogren’s, and several blood test results that indicated “probable” Lupus. I should also tell you that I have ulcerative colitis, but he never linked that to my autoimmune problems.
I’ve had a positive ANA all my life, and was very anemic as a child. (This was in the 50’s) The doctors thought I might have leukemia, but I was never treated for that, and as I grew the anemia gradually resolved. As you can guess, I’ve always been sick and had to push through to accomplish anything. I honestly don’t know what normal energy is like. I thank God for each year He gives me, and am now 60 years old!
Back to today. We moved to NC in 2005, because I felt better in the cooler climate, and I do love the mountains.
I had many lung problems in south Florida, asthmatic bronchitis, pseudomonas infection, and after a DNA specimen was sent to Miami, the doctor told me I had cystic fibrosis! I know I’m a carrier for CF, and thank God I haven’t had any major lung problems since we moved to NC.
My RA bloomed …out of the blue, 3 years ago. I had the sausage like swelling in my hands and arms, and such excruciating pain in my neck, shoulders and upper arms (bilateral) that I could not turn over in bed. My labs were off the charts!
I was fortunate to find a good Rheumy up here, and he started me on the usual. At 1st it was prednisone, methotrexate and Plaquenil.
I’m now on methotrexate, Plaquenil and Remicade. The best part of the Remicade, for me, has been the UC remission. Everything flared up about 2 years ago and without the Remicade, I don’t think I’d have a colon today.
My labs remain “good” but I still have pain. No swelling, but pain and fatigue. My Rheumy thinks I’m fatigued because I don’t sleep well at night. All I want to do is sleep, but I know it’s a fact that most docs think we just want pills to “fix” us. HA! I have to agree that without extremely observable swelling, we are more likely to be dismissed.
This is Krista’s Rheumatoid Arthritis Onset Story, in her own words.
I worked at an animal shelter for a little over a year when I started feeling little shooting pains occasionally in my fingers, about January of ‘09. It wasn’t so bad at first, so just lived with it for awhile. My job involved a lot of cleaning, scrubbing, using spray bottles. Finally, around September of ’09 the pain had gotten much worse and also my hands were becoming very stiff and weak. I was in tears at work and had to ask for help to finish my job.
So, I went to my doctor who at first gave me a prescription for naproxen and a splint for the left wrist because that one was worse although I’m right handed. One day I had to leave work because I was so lethargic I just couldn’t move anymore; that was a scary drive home. After a couple weeks, that wasn’t cutting it so I went back and asked about physical therapy. I went to physical and occupational therapy where it was determined I had thoracic outlet syndrome and tendonitis and a little carpal tunnel syndrome in the left arm.
I continued with therapy but still felt a lot of pain in my finger joints and wrists. They agreed I could have arthritis. I went back to my doctor to see what the next step was. She took x-rays of my hands and blood work. The tests came back negative. She then referred me to a rheumatologist; I had been doing my own research online and really felt like it might be RA. The rheumatologist did see something in the x-rays and did more blood work. I was also found to have a vitamin D deficiency, but again was negative on the Rheumatoid factor.
The doctor said she believes it is Rheumatoid Arthritis though based on my symptoms. So here I am, not as bad as a lot of people I read about, but I do have seemingly constant pain of some sort and can’t do too much housework at once. Gripping things is the worst, so vacuuming and washing dishes are the hardest things. I can still use a can opener and things like that, it is not comfortable feeling but, I can do it. I live alone right now as I had sent my 14 year old daughter to live with her dad a few months ago, that’s a whole other story.
I have several pets and feel bad because I just can’t take my dog on the long walks she likes most of the time –whether it’s the fatigue, my hands hurting from holding the leash, or various other pains in my knees and feet. I can’t vacuum as much as I need to and dread all the little “projects” my home needs done. My back is getting worse now too. My neck annoys the crap out of me with constant grinding and cracking, sometimes sharp pain. I have slacked off on my stretching and exercises, so need to try to motivate myself in that direction again. I don’t work right now as I lost my job in February but, I am trying to get my own pet sitting service started. I have some concern about working but start every day positively and hopeful. We’ll just see how things go. Thanks a lot for this site and the Facebook page Kelly, it really helps.