Becca’s Rheumatoid Arthritis story
Brittany’s Rheumatoid Arthritis story
Susie M.’s Rheumatoid Arthritis story
This is Becca’s onset of Rheumatoid Arthritis story, in her own words.
Hi, my name is Becca and I graduated from art school with a degree in woodworking in 2006. I’ve always been a creative person, always had a new project I was working on and have always worked with my hands. I got a job in a woodshop right out of college and after a year decided to try to buy a house. I was 23, living in Philadelphia and thought it would be a great idea to get a fixer upper, given that I’m a pretty handy gal. My symptoms began a few weeks after I bought the house. My toes swelled and went numb /tingly for a few days. This was odd but also a good excuse to break out my old dr. martens considering how roomy the toes were. About a month after that my hands started acting up. They would ache or cramp up and also go numb/tingly. Around the same time I got very sick with what I assumed was the flu. I went to my PCP who decided I had Lyme disease and started me on antibiotics; she also did a Lyme test and an arthritis panel. All of my blood work came back clean but she still had me finish up the antibiotics since false positives are common with Lyme.
It was downhill from there. The fatigue was incredible – I was falling asleep at work (impressive given how loud a woodshop is), I was constantly stiff and achy, I was freezing cold all the time and would bundle myself in so many layers I looked like the marshmallow man, and my hands just plain sucked. So I started going to doctors and doctors and more doctors. I was tested for everything under the sun and to this day have never had an irregular blood test. Every x-ray, MRI, CAT scan, and EMG test came back squeaky clean. Aside from my initially swollen toes, I’ve never had any obvious swelling and my morning stiffness wasn’t long enough to qualify as anything substantial. I would complain that my fingers felt like stiff little sausages and explain how clumsy my hands were but it was all ignored because they looked perfectly fine. After the yearlong parade of doctors and tests I decided to go back to the rheumatologist.
Lucky for me my new fancy mottled skin (livido reticularis) decided to show up that day and with the limited range of motion and sore joints in my hands, there was enough for her to tell me I was in the right place. It wasn’t a diagnosis but it was enough. We all know how horrible this process is and having someone confirm that I wasn’t crazy, that something unusual was going on and that she was going to help me figure it out was the best news I could have received. Eventually she put me on methotrexate and after a few months without results added Plaquenil to the mix. None of the drugs were working so they ordered ultrasounds of my hands. Finally after all this time I had a test that showed SOMETHING! Holy crap! I’m not crazy! I have bone erosions! There is a reason that I am in pain! I was ecstatic. The ultrasounds showed a few bone erosions and some synovial thickening. My rheumatologist was happy but at the time an ultrasound wasn’t enough evidence so she sent me for more MRIs to confirm the findings. And of course they came back clean, making the ultrasounds worthless. I asked to be taken off the medication; it had been a year, I was only getting worse and the side effects were awful. My rheumatologist told me we would just have to wait and see what happened and I scheduled an appointment 6 months out. I was fed up with doctors at this point but I’d been having a strange neck pain and wanted to get that looked at before I swore off the medical profession. I had a CAT scan that showed thyroid nodules, which came back as possibly malignant and positive for Hashimoto’s. So, I have Hashimoto’s disease? That can cause joint pain! Cured! I’m cured! This has been the problem all along! I went to my rheum and told her about the thyroid and she was so happy for me. She agreed that it might have been the problem all along! She gently shook my hand and said she never wanted to see me again. This was the only time I’ve ever cried from joy. I waited until I got home then completely broke down because I was going to get my life back. I would be able to build furniture and make things and knit and use scissors and get crafty and do all the things that I couldn’t do anymore! I had my thyroid removed and biopsied. The nodules came back as benign. It’s funny because I couldn’t have cared less about the potential thyroid cancer- all I was concerned with was getting my hands and body back. A lot of things did change for the better after the surgery. I’d been having a lot of skin problems that cleared up and the majority of my fatigue went away.
At that point the fatigue was the most debilitating symptom I was dealing with. We’re tough people, we can handle pain and stiffness and the inability to ever feel comfortable but you can’t fight the fatigue. Unfortunately none of my joint symptoms changed. Back to the rheumatologist I went. She told me that it had been unlikely that my thyroid could have caused symptoms as severe as mine. Well…wow. Why did you let me get my hopes up?! And let me guess… there’s nothing we can do? We need to wait until there is more evidence. Fast forward a year to a few months ago. My feet, knees, hips, wrists, hands and recently tailbone are constant issues and things always seem to be getting worse. Still no swelling, no irregular blood work, and no serious morning stiffness. Actually, the best I feel in a day is about 10-15min after I get out of bed and it’s a gradual downward slope from there. I’m gimping around by lunch and once I lay down on the couch at the end of the day, I’m done until I hobble and creak my way to bed. But wait! Apparently while I’ve been waiting around for my feet to swell up or for my Rheumatoid factor to make it above 14 its been decided that ultrasounds are a reliable tool in diagnosing RA. So my doctor sent me to get new ones and they showed all sorts of fun new bone erosions.
Still very little synovitis and the same synovial thickening and no one feels that there’s enough inflammation in my joints to have caused this kind of destruction but that doesn’t really matter because it’s still happening. I finally have my diagnosis of RA, I’ve been put on leflunomide and in a few weeks I have another appointment and we’re going to start the approval process for Enbrel. It took 4 years and I had to hear a lot of those “The sooner you realize there’s nothing wrong with you, the better off you’ll be” and “you just need to exercise” types of comments. I’ve tried sugar free and gluten free diets; I’ve had a lot of acupuncture and tried other things with very few results. But I finally have a diagnosis. I’m not crazy. I’m not making this up. I did not watch an episode of House and decide I had that disease. I am not a hypochondriac. I finally have validation and I am FINALLY able to do something about this instead of sit idly by while my body deteriorates. Although I can’t use my hands the way I used to I still work at the same woodshop only now I’m designing the furniture instead of building it. I still get to be creative and make things; the process is just different. I’m trying to come to terms with the idea that this is my body now and there isn’t a magical fix that will bring my old life back, and that’s hard. This is an unfair disease and the diagnostic process is unbelievably difficult but I’m happy I made it through and can now move forward with my life.
Update from Becca: At the time I wrote this I thought my journey was over but it wasn’t. The short version: It took me nearly another year, the addition of a lot of painful neuropathy symptoms and a change in doctors to get proper treatment. My old rheum continued to dangle Enbrel in front of me until I finally spoke to her on the phone and demanded it. She refused so I switched doctors. This was 3 months ago. New rheum was disgusted with my old doctor – he called her old fashioned and unprofessional and he also put me on Enbrel immediately. After 7 weeks on Enbrel and mtx injections it felt like someone waved a magic wand and nearly all my symptoms went away! I’m not exaggerating when I say that after 5 years, I didn’t think this could even be possible. It’s only been a couple weeks and i still feel like I’m living in a dream! I’ve even eliminated nearly all my painkillers!!
I expected to have to deal with a lot of pain with RA and I think that made it easier to accept the way my old rheum was treating my disease. 70% improvement seemed like an impossible pipe dream but that shouldn’t be our mind set. I feel angry and resentful and I feel like my crappy rheum stole years from me. If you’re unsure about your doctor you should definitely try someone new. I can’t stress this enough – it only took me 2-3 months with a new doctor and proper meds to feel like an entirely new (or at least restored/refurbished??) person. And a tip I got from another RA Warrior that I used when looking for a new dr. – check out healthgrades.com. You can see how a doctor ranks and find out how long ago they graduated from med school – try to find someone that’s young and didn’t graduate decades ago. Treatment has changed a lot and you want someone who feels comfortable treating by the newer ACR standards. 70% is not a pipe dream and we suffer unnecessarily due to the incompetence of miseducated /stubborn doctors. I applied for the Enbrel support program and was approved very quickly and easily. They cover all costs for the first 6 months and then it’s $10/month after that. And that’s for the next 10 years! I think most pharma companies have similar programs.
I didn’t realize how much the head games had impacted me! Between my old rheum who was never convinced I had RA and didn’t trust the validity of ultrasounds, another rheum who’d insisted that I was depressed and manifesting my own pain symptoms, and the people around me who didn’t even try to hide their eye rolls when discussing my health, I was left secretly doubting myself and my symptoms. It wasn’t until the Enbrel worked a couple weeks ago that I finally accepted that this is all real, I’m 100% not crazy, and that this isn’t my fault. The relief is incredible.
This is Brittany’s onset of Rheumatoid Arthritis story, in her own words.
My name is Brittany and I am 25 years old. I was diagnosed with RA when I was 19 years old so have been dealing with this disease for 6 years now. Wow! Has it really been that long?
For as long as I can remember, I have been playing softball for our town league in the summers. My dad was the president so my two sisters and I had always played and helped out around the park. My senior year in high school, last year in the league, I noticed one practice that I could not straighten my arm out. My elbow felt like it was stuck. So we tried hot pads, stretches, and anything else we could think of, but just figured it was some sort of injury that would heal itself.
The next year I went away to college, to Western Illinois University, and my elbow was still “stuck”. My primary doctor figured it was a sports injury as well and put me in physical therapy down at school. They tried the usual things you do in therapy as well as electric shock and nothing would straighten out my elbow. In December, my freshman year, I woke up one morning and my ankle and knee were swollen so bad that I could not walk to class. I ended up trying to get there and thinking “What is going on? Could it be because it is snowing?” Well the swelling kept up for a couple of weeks so I went home and made an appointment with a specialty doctor. He sent me for tons of blood tests and an MRI. When I went in for my follow appointment, he told me the lovely news of having RA. I did not know that much about the disease, but knew a little bit because my great aunt is completely deformed from the same thing. Needless to say I was very scared!!
The first rheumatologist told me that I would be in a wheelchair by the time I was 30. She was not very patient-friendly, so I immediately switched doctors. They started me on prednisone and a cortisone shot that immediately straightened out my “crooked” elbow. I was also was put on 6 pills of methotrexate because my father had just passed away and that was all I could afford 🙁
Currently, I have again switched doctors and she first started me out on the Simponi shot along with my mtx. That injection was not doing anything for me and I had actually gotten worse. The last few months have been the worst in regards to swelling and pain that I have felt since I was first diagnosed. So now I am on Enbrel along with my mtx and am hoping this is going to help. The joints that are most affected are my hands, knee, and ankle.
This week I went and got an RA ribbon tattooed on my foot. It is so meaningful and people ask me all the time what that ribbon stands for! So for all of you out there….I not only hold you in my heart, but symbolize us all with the ribbon on my foot!!! Gentle hugs to everyone!
This is Susie M.’s onset of Rheumatoid Arthritis story, in her own words.
My Mother got Rheumatoid Arthritis when she was about 47… and diagnosed at 50 and died at 56 from complications. She wasn’t walking on her last trip to the hospital and died that night. The only drug she took was Indocin, and her death certificate listed liver disease with complications from Rheumatoid Arthritis. That was in 1970. Gold injections had been offered two years prior and they wanted to sever the tendons in her hands so she could straighten them.
I turned 50 and then 60 and thought I had missed getting the disease. When my foot began hurting when I was 62, I thought it was something else. I saw 3 doctors, had blood tests and x-rays and nothing was found. The podiatrist wrapped my foot with tape three times and sent me home with an apology that he could find nothing wrong although he said he could see the swelling and redness. I walked it out and the pain was horrible. Red swollen and no diagnosis. The fatigue began around that time. It was extreme. Sometimes could not get to the downstairs for an hour. I cried for about 2 weeks wondering what was happening. I hurt everywhere, shoulders and one knee especially. I began considering RA, and I was terrified because I saw what horrible conditions my Mother had and I couldn’t help her find relief. My disease is from her, and my daughter is at risk because of my RA. Mom was adopted so we don’t know how far back this went.
I went online and found a RA clinic about 65 miles away. I drove myself down and needed a referral. I called my PCP for a referral while I stood at the information desk. My PCP office gave referral gladly and I was in. That clinic saved my life that day. They called it aggressive RA. They gave me a Med-Pak (steroids) and within TWO days the inflammation and fatigue felt as if they were gone and in 5 days I felt like a new person. About 3 weeks later I took part in an RA study. A University doing the research in the South found I was eligible and were seeing if a heavy beginning dosage of methotrexate, and Enbrel would halt the progression of aggressive RA instead of slowly upping the meds as the disease worsened. For 2 years, I took 20 mg. of methotrexate once a week and an injection of Enbrel on the same day. At the end of the 2 year trial there was no swelling, the pain was minimal to none, and my numbers were good. Blood work every 4 weeks.
For the next 3 years I took just the methotrexate 20 mg, once a week and occasionally ibuprofen. The fatigue didn’t return. Last year the inflammation returned and the disease was active again in both wrists and knees although the pain was not terrible. To avoid further joint damage, I am currently on the methotrexate and Enbrel combination again. Blood work is good, liver, kidney, and thyroid function is good. I’m a survivor of cancer 12 years ago, and breast cancer 3 years ago, so keeping watch for lymphoma. Having the immune system suppressed is a bit of a worry, but so far I’m here with working fingers to write this story. I’m working again and not limited much except I don’t mow the lawn any more, 6 years post diagnosis.
No smoking, very little to none alcohol, limiting sugar, and tomato based sauces, spicy foods only in moderation help. Lower carb and higher in protein foods seem to do me well. Western Medicine is nearly limited to drugs and chemicals to alleviate disease symptoms. I am thinking that finding what foods your body likes has a great influence on the disease. The food pyramid isn’t for everyone. Homeopathic remedies, massage, swimming, yoga, diet, and cultivating happiness might be something worth exploring if you are not doing well. Worth a try and it can’t hurt along with your current treatment, especially for the younger women.
The downside of my disease is neuropathy in feet, with numbness along with heightened sensitivity. Vertigo and dizziness is my worst complaint, and being unstable on uneven surfaces. I just painted my living room, buy and sell at auctions. Will travel to Europe again this fall if I can take my injections on the plane. So, even with RA life is good. Thanks for listening and I hope my story can help. Susie M. (68 years)