Heather’s Rheumatoid Arthritis story
Stephanie’s (2) Rheumatoid Arthritis story
Terry’s Rheumatoid Arthritis story
Lois’ Rheumatoid Arthritis story
This is Heather’s Rheumatoid Arthritis story, in her own words…
My RA Story
I don’t think it is what you think it is
I was 23 in 1995 and living on my own in Santa Fe, NM. It was 1800+ miles from where I grew up and where my best buddy and now husband was. I was having a blast as a young woman working a really interesting and rewarding job as a Cytogenetic Technologist in the FISH lab. Basically we put fluorescent tags on chromosomes and counted the dots, or ‘painted’ certain chromosomes with pretty colors. At the company holiday party I wore rockin’ heels, and my toes were killing me by the end of the night, and apparently made me walk funny because I was asked if I was ok to drive home as I gingerly walked to my car. (I was) A few weeks later I was sitting at my desk with my eyes in the microscope, when I noticed my right big toe felt odd. It felt sore and painful, and warm. By the end of the day I was limping it hurt so much. That night the pain from just the covers was excruciating and I had a difficult time sleeping. I did not remember injuring that foot, but waited a few days to see if it got better. I have always been one to wait things out, so why not this? I remember joking with my now husband on the phone that who knows maybe its gout. Like a 23 year old woman would have gout, if I was 53 or 63 I could see it but 23, not really.
Things did not improve and I had no PCP in Santa Fe yet, so I went to an urgent care clinic to get this checked out. They ran X-Rays and did bloodwork but for some reason decided that it was gout. The X rays were ‘clean’ and my bloodwork came back within normal limits. Yet the pain was still there and the meds they gave me to cure this giant, red angry toe thing did not work. I went back a couple weeks later for a follow up and questioned them about the normal tests, they told me the only way to confirm what it was to aspirate the joint. I was leery of the care they had been providing thus far so I opted out. Looking back I probably should’ve sucked it up then and there but I had no idea of what the future held for me.
By springtime the pain, swelling and redness subsided and I did not think about this incident for many years. In the meantime I got married, had my first child, moved back to MA-where I was working in the DNA lab as a technologist there. I mentioned the gout diagnosis to a PCP during a physical who told me to ignore the prior diagnosis but there was no follow up either. I had had pain in that toe now and again but nothing like it was the very first time.
Beginning of the return
Now I had two children, a brand new house and a job in the DNA lab. Working in a lab used to (not so much anymore) predispose workers to repetitive strain injuries, like carpal tunnel. I thought back in 2003 that that was beginning to happen to me. Except I was having tingling in my pinky and 3rd finger too, not just the first 3-which is not typical of carpal tunnel. Nonetheless I was referred to physical therapy for it. The therapist thought the tingly pinky and 3rd finger were not caused by carpal tunnel and wished he knew what was causing it. We did not figure it out, because I was a busy working mom and really had no time for physical therapy and spending hours at doctor’s appointments. It was let go, to see what would happen, would it get better or worse?
Here to stay
I had quit my job to stay home with the kids, something that was kept in mind when we bought our home. A few months after I “retired” I suddenly had a problem walking up and down my stairs from the first to the second floor-that same right big toe was killing me again. I saw a podiatrist who, wanted to do surgery to figure it out. I refused, but accepted cortisone injections (screamed my head off with them too) and bextra. The cortisone injections worked pretty well, but my foot is not the same foot as it was in 2004. I should’ve had the surgery, but didn’t
In 2006 I gave birth to my third child, a planned home water birth. When I gave birth to her I was in the best shape of my life, for months before and during my pregnancy with her I was at the gym 4-5 times a week. I loved running and doing yoga, it gave me such a high and her birth was the biggest accomplishment I have ever done, both physically and psychologically (I conquered my fear of what other people think).
However for many months before I got pregnant and after her birth my left elbow was swollen, warm and painful. During the pregnancy it was ok. I had mentioned it during a physical to the CNM I saw in August 2005 who told me to rest it because perhaps I injured it. I rested it and it didn’t help.
So when the baby was 3 months old, it was the beginning of 2007 and I made a resolution to figure out what the heck was wrong with that left elbow! My chiropractor (you read that right) ordered an MRI of that elbow which indicated RA. Something that I was thinking may be a possibility but the reality was now slowly sinking in. I took that MRI to my PCP who started off saying “nahhh, people with RA have XYZ and warm joints” then felt the joint and backtracked. I was referred to an orthopedist then to a hand surgeon. It took me about 4 months to see them because of the area I am in and some issues with the one and only really big snowstorm that season. Although my hand exam was positive for RA, we waited for the results of the synovectomy in July. They came back positive, my PCP told my husband before he told me! I was advised to get on strong DMARDs ASAP, but I was still nursing and had no intention of weaning before she was two.
I have to say that the day I had surgery was the worst day of my life. I was devastated and it took a long time to heal. So much so that I have gained close to 30Lbs since. I went from being in the best shape of my life to the worst all because of RA.
I now see one of the top rheumatologists at a teaching hospital here, I really really like her. She respects my opinion, and I value her wisdom. She has been my doctor for about a year and a half after the fellow I saw at the same hospital left in the midst of me having one of those very rare reactions to sulfasalazine. My bone marrow hated it and my WBCs tanked, in the same week I had a nasty cold, got put on ‘prophylactic’ antibiotics (despite my not really wanting them), proceeded to catch an ear infection then strep throat (when I get that its bad, like antibiotic resistant bad!), and be on more antibiotics. I was miserable and should’ve been admitted, but my older kids had their dance recital and I narrowly avoided hospitalization. I met my now doctor as a preceptor to the former fellow. She called me at home to check on me, and I was feeling better so I let her have it! I’m not sure if I knew who she was prior I would’ve been so harshly honest but I was really mad and frustrated!
Now I am on Enbrel because I still refuse to take MTX, even though I have ‘failed’ 2 other DMARDs. Unfortunately I am not sure it is working completely, and think it may need some support with the MTX. My youngest weaned at 2, when I went to Africa to do volunteer birthwork. I am trying to figure out how to make my life’s calling of being a midwife work with having an autoimmune illness like RA. It is hard and I wonder many times if I will be able to keep up physically. I fear and welcome at the same time a different opportunity to do this type of work because I want my kid’s generation to know they have options when they birth. Because I believe the way we are brought into this world should be gently and peacefully and I want to do what I can to support homebirth. I thought it was to be a midwife, but I am not sure my body will let me do that.
Stephanie’s (2) Rheumatoid Arthritis story, in her own words…
I was diagnosed with RA ten years ago November 7th. Thank you for asking for onset stories. I also find them extremely helpful.
I was 22 and in my last year of college when RA entered my life — well, took over my life is more like it. I was from NYC and in college in PA, a semester away from realizing my dream of becoming a high school English teacher. About 3 weeks after the semester started, I woke up with a funny feeling in my left wrist (I’m left handed). When it worsened over the next few days, I went to the campus clinic. They said it was tendonitis and gave me a wrist brace. Several more days went by and it just got worse. Over the next 1.5 months, I lost the use of the left side of my body and saw 13 doctors at 4 hospitals before being diagnosed with seronegative RA. By the time I was diagnosed, the fingers on my left hand were so swollen that they touched and I couldn’t bend them. My jaw was so swollen I lived on pudding and chicken broth (and lost 20 pounds in 2 months). I would walk & my left leg would give up, causing me to collapse where I stood. Of course, when I was diagnosed I told the doctor he was crazy. Arthritis? At 22??? I thought he was just another quack. He looked at me with pity and told me that my RA was so severe I would probably be on disability within 8-10 years and, thanks to immediately starting MTX, my dream of being a high school English teacher was not just improbable but dangerous to my health. I was angry at that rheumy for a long time, angry that he stole my dream, angry that he stole my hope. I eventually realized he was working with the information he had. Conventional wisdom at the time said severe onset RA = severe erosion, disease progression, disability & secondary illnesses.
Fortunately, people diagnosed with RA today have the hope of biologics. After my diagnosis, I received a BA in English and moved back home to NYC. I saw an ad on TV for Remicade. After several months of begging my new rheumy to let me try it, she relented. My insurance at the time had me take Enbrel for a month, which didn’t work. When I had my first Remicade infusion in March 2000, I immediately felt a difference. Nearly 10 years after my 1st infusion, I’m still successful on Remicade without a single side effect, have not missed a day of work due to my RA, have not developed any secondary illnesses & have not had any additional erosion beyond my onset.
I have spent a good amount of time raising money for the Arthritis Foundation over the years. I walked in the 2001 Honolulu Marathon and the 2002 Bermuda Marathon while raising money. I got married to a wonderful man in 2006. This past July we bought a brand new, 3 story townhouse — something I never would have considered 10 years ago.
As I tell people newly diagnosed with RA, I’m the same person I was before RA — just a little slower and alot more focused. For a long time, my success was an exception to the story of life with RA. Now, every newly diagnosed patient has hope — hope I didn’t have 10 years ago and I’m proud to be a part of that story now.
This is the Rheumatoid Arthritis story of Terry, in his own words
I have always been very active most of my life with working out, playing football, baseball, golf, racing motorcycles, riding bicycles and racing mountain bikes. I sustained several injuries during this period from age 16 to 42. I have broken 14 bones, had 3 concussions, broke a front tooth off, and then later broke the crown off. At an AMA regional event in Saint Louis I hit my head so hard that, for 2-3 seconds, I was seeing everything in black and white.
My feet and knees began hurting me somewhere around the age of 38 or 39. I just brushed it off as feeling the effects from the abuse that I had dished out on my body over the years. At the time I broke my last bone, my right ankle for the second time, I was 43. Shortly after the ankle healed up (bones don’t heal at 43 like they do when you’re 25), the printing facility where I worked for 16 years, announced it was shutting down. After finding another job, I noticed my hands and fingers had begun hurting. Again, I just brushed it off. After all, it wasn’t a bad hurt, more like a small ache every now and then. One thing about racing was the mental conditioning had prepared me to deal with and block out pain. If you got hurt racing (broken collar bone, foot, ankle etc) you rode yourself out of the woods … you had to.
The next year I was 44 and the pain was more persistent so I went to see my GP. Although concerned, no blood work was done and I was diagnosed with synovitis and was only taking Aleve for a year before changing GP’s. By this time, my feet were hurting badly and my hands were hurting most of the time now. My new GP ordered blood work and put me on Celebrex. Within 4 days of starting the Celebrex, I went from bad to worse. I could hardly walk, my hands and wrists were swollen and hot, my fingers were nearly twice their size. I couldn’t close my hand up to hold anything. My right shoulder had began hurting and felt like it was dislocated again (I had dislocated it in 88). I quit taking the Celebrex the same day that I got the news that I had RA. I remember feeling devastated yet relieved at the same time. I finally knew what was wrong with me, but it was bad … real bad. I was numb over the next 2 weeks having more questions than I had answers, I didn’t know who to talk to or trust, or how to search for and find a good rheumatologist. During this time, I sold all of my motorcycles because I thought my life was over. I literally hurt so bad for 4 to 5 months that I prayed to die. I was hurting all of the time; the pain would wake me up in the night. I hurt so bad that I would not want to get out of bed, wouldn’t do me any good anyway because I hurt sitting in the recliner or on the couch as well.
My first rheumatologist was not a good one. However, he did get the progression of the disease slowed down. He put me on Methotrexate and Enbrel. I would try to talk to him, ask him about things that I had read about and he would cut me off. He would tell me that I can’t believe everything that I read and that if I wanted to get better, I would listen to him. Nine months later I walked into my second rheumatologist and the difference was like night and day. The first thing he does every visit is want to know how you’re feeling, what has been hurting, what kind of activities you have been doing. We will talk sometimes for 20 minutes or longer before he starts the examination process. We have tried Minocycline with MTX while stopping the Enbrel, altering the dose of MTX while sustaining the Enbrel injections; he has given me Metanx (neuropathy medicine) samples for my feet. The Metanx made my feet feel better within 3-4 days and I was very relieved … at first. One of the side effects of Metanx is mild diarrhea. No thanks, I would rather have my feet hurt.
The Enbrel worked well for the first 5 1/2 years but stopped working this spring. We started discussing other medicines to try. Doc gave me several options to go home and research (he knows that I don’t just take his word or trust a pamphlet published by a drug company) and talk about on my next visit. I was no better and we decided to start Orencia infusions. I just had my 4th infusion 2 weeks ago and I am better than before I started, but I am still a little disappointed. I walk with a limp, my feet hurt every day, my hands hurt every day and occasionally my right shoulder, right hip and both knees join the party. And then there is the clumsiness, the days you can’t think clearly, the swelling and fatigue.
Oh, by the way, I am back on a dirt bike and riding every chance that I get now. I am out to prove that having RA is not the end of the world. Your world changes, but you have to change with it and continue to live and enjoy life the very best that you can.
You can hear more from Terry on his blog, Dual Sport Life.
This is the Rheumatoid Arthritis story of Lois, in her own words.
My name is Lois.
I will be 45 next week; I received an official diagnosis of Rheumatoid Arthritis at age 26. I have not had a day without pain ever since.
When I started school and they gave you the TB skin prick test mine was always positive. They said I had been exposed but did not have TB. My dad is a retired Marine, When I was age 9 thru 12 we were stationed in Hawaii. The military doctors there scared my parents about the positive TB skin prick test so for a year I was made to take medication everyday as a preventative. It was around this time I started to complain of hurting all over. My mom took me to the military doctors and they never ran a blood test. They took some xrays and basically said it was growing pains. I would take baths in Epsom salts and have my mother put Absorbine Jr. all over me at night. Then I seemed to be fine for years.
Then at age 23, I got married. The marriage officially lasted a month; I almost had a nervous breakdown. It was around this time I started going to doctor quite often because my stomach was a mess because of my nerves. One day I went with shorts on and my family doctor kept asking if my knees hurt I said no. He said they were swollen and hot, he wanted to keep an eye on them.
Shortly after this I was tired all the time, I would come home from work and go straight to sleep, I could got get enough sleep. I was also becoming short of breath. Found out I was very anemic. At this point I had also been going back and forth to the Orthopedic doctor complaining that this joint or that joint hurt. I would get sent home being told I had tennis elbow, bursitis, tendonitis etc….
Then after going to a company picnic and playing softball the next day my left index finger was swollen like a sausage. Went back to the same family doctor who took one look at it said I had RA and put me on Plaquenil and Prednisone. He ran blood tests several times and they always came back negative. I was scared I never heard of RA. He sent me to a Rheumatologist who scared me even more because she kept saying the tests were not positive but pointed more in the direction of Lupus. I of course went home stuck my nose in a medical book and in 1991 the prognosis in the medical book for Lupus was pretty gloomy!
Well, by now the RA was hopping all over my body from my neck to my toes. I was back at my parent’s house, my mom had to pull me out of bed and help get dressed in the am, but I made it to work every day! After 8 months my blood tests finally turned positive for RA.
For the past several years I now have Fibromyalgia on top of it. I have taken every NSAID in the book. I have taken Plaquenil, Sulfasalazine, Prednisone (way too many times). I have been on Methotrexate since 2001; I fought to not take it for 10 years because I was so afraid of the side effects, which I did not seem to get. I have done Humira and Rituxan infusions all without much success.
For the Fibromyalgia I took Cymbalta which did not work for me. Earlier this year I was put on Savella a drug that was just FDA approved for Fibromyalgia at the beginning of 2009. I weaned myself off of the Savella it was horrible. I had hot flashes and in all the years I have had RA when I would get depressed I always managed to pull myself back up. I always tell myself there is always someone out there worse than you, get over it and it has worked. While on Savella I started having thoughts like I hate everything and I wonder how many of this pill and that pill will do me in. I do not think I would have acted on those thoughts, but just having them scared the daylights out of me. Once it was all out of my system my head felt so much clearer. It was as if the medication had my head one big foggy clogged mess!
I have RA from my neck to my toes. I need total knee replacements on both knees. My neck and spine is a mess. My left elbow does not straighten all the way out. Hands and wrists have a lot of damage and always swollen as well as ankles and feet. My shoulders and hips did not hurt much but the past couple years they have joined the club.
I am somehow managing to work though I do not know how much longer I can push myself. I fall asleep at my desk. I am so fatigued that I have even caught myself dozing off while driving to and from work. Some days I cannot use a stapler or staple remover and can barely write. If I sit too long I hurt and I cannot be on my legs for very long at all. I guess I am managing to push myself to pay off some bills so that I can get my knees replaced. Once I make the decision to have a knee replaced I will not have a job. My employers are anti-doctors and they never get sick, they totally do not understand. They will not hold my job for the 6 to 8 weeks off my surgeon told me I would need with each knee. We have security cameras that run 24/7 in our office and my boss loves to fast forward and say to me and everyone look she is moving normal. HA HA.
I do believe in the idea that you are genetically predisposed and something triggers your immune system to go haywire. My maternal grandmother had arthritis and it seemed to be more RA she had a few times where she could not get out of bed and her knees would be all swollen and hot like mine. But they never ran tests back then. Just said she had Arthritis. Three years ago my mom got Dermatomyositis and it attacked her lungs. She is doing very well now, thanks to a good family doctor and my Rheumatologist. I do not know if the positive TB skin prick test or the preventative medication had anything to do with getting RA. My new family doctor claims there have been studies that show there can be a connection. I also wonder if all the stress and almost nervous breakdown because of the marriage at 23 may have helped to trigger it. I have read stress plays a big factor.
My bosses always say we are all going to die someday. Well I am not ready to go yet and God willing I plan to keep on pushing on for a good long time pain and all. Even with all the pain I am thankful for everyday that I open my eyes to a brand new day!
I just wish that these new so called wonder drugs they keep creating were not so extremely overpriced! Even with insurance they are sending me to the poor house. The bills I mentioned paying off prior to knee replacement were caused mainly by medications!
I thoroughly enjoy your site Kelly. I hope that you are feeling better and please keep up the great work. If we can’t get the people without RA to understand at least we all can lean on each other! Thank you!