Gwen’s Rheumatoid Arthritis story
Mellonie’s Rheumatoid Arthritis story
Tiffaney’s Psoriatic Arthritis story
The following is Gwen’s onset of Rheumatoid Disease story in her own words.
My name is Gwen. I’m 56 years old. My RA first started in my hands in about the year 2000. I had been a quilter and worked with needlecrafts since I was a teenager. I also had been playing the guitar since I was 13. The pain in my thumbs and fingers was severe enough that I started seeing my family practice doctor who ordered x-rays which showed nothing, then sent me to physical therapy, which had no effect at all. We went back and forth for a few years like this. It never occurred to me that I could have RA and apparently, not to my doctor, either.
By the year 2006 I was working at a fabric store and cutting fabric became excruciating. I would often go home and cry. The pain was becoming intolerable and my fingers were starting to get crooked and my finger joints swollen and enlarged. My hands look like those of an 80 year old.
Next, I was sent to a neurologist who told me I had carpel tunnel but only in the right wrist. My left hand has more damage and pain. I asked her what could be causing all the pain in my left hand. She said she didn’t have a clue. She gave me surgery for the carpel tunnel (which failed, but that is neither here nor there) and sent me on my way. Back to square one. I was really starting to feel hopeless and scared. I didn’t know how I was going to live with the kind of pain I had and how I would function doing normal tasks for the rest of my life.
Finally, my doctor ordered an MRI and the results showed that I had a lot of damage to the joints in both hands. He sent me to a rheumatologist who diagnosed me and started me on a series of medications hoping to slow down the progression of the disease. I am on Remicade and prednisone when needed. I also take prescription pain meds. My pain is controlled enough that I lead a pretty normal life. I have since been diagnosed with fibromyalgia and osteoarthritis.
The areas affected are my hands, elbows, cervical spine, lumbar spine, and toes. I’ve had to give up doing some of the things I love such as quilting and needlework but I’m trying my best to stay active. I walk everyday, golf when my neck and hands cooperate, bike ride and garden. I try to focus on what I can do instead of what I can’t but I won’t lie and say it’s easy. I get angry and frustrated. I don’t always count my blessings when I should. But I am a work in progress. I’m hopeful. Thank you for this wonderful web site. You are a blessing!
The following is Mellonie’s onset of Rheumatoid Disease story in her own words.
My name is Mellonie and my onset story is one of difficulty! I had been suffering with joint pain and swelling in my ankles and knees for years and my doctor then would prescribe me Lasix thinking it was water retention. I went through this forever with all kinds of blood work. I decided to switch my doctor because I felt I was getting nowhere. I then started having some serious neck problems and was referred to physical therapy and also did some cat scans and an MRI with some blood work again they thought it was muscle problems. I asked for a referral to see a rheumatologist since they are muscle docs too. My doctor said “with what diagnosis?” I said well maybe they know something we don’t. My doctor then said and I’m quoting “I can give you a bull sit diagnosis like fibromyalgia” I was taken aback but he agreed to send me.
With my appointment being a couple weeks out I was involved in a rollover car accident on the highway. While in the ER they did a complete cat scan. They found nothing immediately wrong and discharged me. I went to my rheumatologist and was giving the history and she pulled up my cat scan and she found severe inflammation in my hips and neck and decided to order lots of blood work. She told me the list of possibilities. The tests came back and I have sero-negative RA. I went back to my family doctor and he stated, “We did those tests and didn’t find that”.
I was also diagnosed with fibromyalgia, chronic fatigue syndrome, severe vitamin D deficiency and arthritis in my spine. I then started taking sulfasalazine to treat my RA. I was also prescribed vitamin D 50,000 iu units twice a week. I was currently taking Neurontin for migraines, Norco and Flexeril for pain. But the sulfasalazine wasn’t helping; neither did prednisone. So my rheumatologist started me on methotrexate pill form and folic acid.
The next visit it was decided that I needed a stronger dose of methotrexate and folic acid. I’m at an even higher dose now. I have recently developed something in the irritable bowel syndrome family we won’t know what until I have a battery of tests. Now that family doctor who never believed the rheumatologist’s diagnosis has dismissed me from the practice, it seems me asking for help and wanting to be treated was to much work for them. I am now looking for a new family doctor and pain clinic help.
The years of being undiagnosed and untreated made these diseases worse than what it should be. Had I been diagnosed and treated earlier I wouldn’t have so much damage and be affected in so many joints. I pray every day that I can be pain-free. I pray for a cure. I pray for the medical community and everyone else to not only give RA more recognition but to realize this isn’t just “arthritis” this is an autoimmune disease. We suffer with not just the disease but with the side effects from treatment as well. I hate the word “arthritis” in the name because its an unfair word, I hate that we don’t get support like other diseases and I also hate that we get no ribbon, no recognition days or acknowledgement to bring more awareness! This is my story!
This is Tiffaney’s onset of Psoriatic Arthritis story, in her own words.
I really started noticing the joint issues after the birth of our son in 1999. It started with the noisy creaking and cracking joints for some time followed by pain of joints. First my knees then my hips, wrists, ankles, fingers and toes, shoulders and spine and now throughout my body into joints I never knew I had! It has been trying getting an accurate diagnosis. I live in Canada and our access to medical professionals is really good which usually means less time to reach a diagnosis, unfortunately due largely to my young age (19) at the earliest memory of onset. I was sent to a chronic pain clinic with everyone telling me “You can’t be in that much pain;” “It’s all your imagination;” “It’s just fibromyalgia which there isn’t much we can do for you.”
Needless to say I fell into a depression. Why was no one helping me or listening? I know my body better than anyone else yet they don’t even listen. Finally after much convincing on my part to my family doctor he sent a referral to a rheumatologist to “appease” me – lol. Upon my very first visit it was obvious that I had an autoimmune-type arthritis but which one was most appropriate for my symptoms? After blood tests and x-rays she finally figured out what the offending condition was. It was Psoriatic Arthritis. I have a gene marker in my DNA (HLA- b127) that is associated with my arthritis type. We finally landed on Psoriatic Arthritis due to the appearance of my smaller joints. My fingers are no longer slender and feminine they are swollen and sausage like. My feet and knees feel broken when I walk and the pain is horrid. My shoulders are week as are my back and hips.
I was so relieved to finally have a diagnosis and a name for the pain. I am now on disability, as my rheumatologist strongly believes I will not be able to work again. Being diagnosed is a long journey, but living with autoimmune arthritis is life altering.