Kay’s Rheumatoid Arthritis story
Leigh Ann’s Rheumatoid Arthritis story
Vicky’s Rheumatoid Arthritis story
Kay’s Rheumatoid Arthritis story, in her own words
I felt the same way about re-telling my story. It seemed exhausting, and I have told it too many times. But I also know how many stories I had read in my search for answers, and how they really helped me. More than any doctor ever, did.
My symptoms started years earlier too. I didn’t recognize them until I was diagnosed, and it all made sense.
I was running marathons. I always felt that running was more painful for me. All my friends trotted along like gazelles, and I felt like a warthog. I hurt, and it took longer for me to recover. Starting out on a run, it took me half an hour to feel human and pretend I was enjoying the exercise. I was stiff and sore and needed a lot of stretching, and slow starts.
During one marathon, my hip started hurting badly. So much so, that I had to stop running, which was unheard of for me. Plod along, never quit, grimace through the pain. But I stopped halfway.
Then came the trips to doctors, hobbling along, first with my right hip, then weeks later my left one. Never at the same intensity of pain, and sometimes not together. The pain was like someone sticking a dagger into my bones and twisting. Hot white unrelenting pain, and it felt different. I’d had twisted things and broken things, and it was none of the usual suspects.
So, having no answers, and no relief other than aspirin products, I stopped the running. I started hiking. I loved it too, it was almost as good as running. But I noticed that after about an hour ..or 10kilometers…my toes would sting like 40 bees attacking them. I couldnt walk on them, had to hobble on my heels. I still think about how many hikes I planned and forced myself on saying “no, youre not stopping me “feet”, I really love doing this and I need to be active” The toes never cared about my feelings.
Again with the doctors, what is that? Why do my toes feel like they are burning tingling swelling up and become useless? No answers. And some doctors even hiked with me, they were my friends. They were baffled. Never heard of it. I was in my late 20’s.
Then the trauma piled up. Married 28 years and divorcing, selling the family home, my youngest sister died of cancer, my father had leukemia, and other assorted stress.
I started having terrible sweats in the night. Woke up and the whole bed was soaked. I was stiff too, like I’d used a bunch of muscles I never use and was paying the price. Only I had done no exercise the previous day. I was 48.
And the fatigue! I went from having the most terrific garden, flowers, doing art work and volunteering for the community….to a messy house, garden overgrown, meals at take out please! I kept saying I had the flu, but after a few weeks, noone believed me anymore.
The “AHA” moment came when I got up to go to work one day, and my entire body was stiff like the Tin Man. I’ve heard the tin man expression before, and you’ll know it when you feel it! Even my jaw was wired shut. I couldnt open my mouth enuf to shove toast in it.
I was truly frightened. Because no matter what, from that moment, I knew I had something seriously wrong with me. No doctor was ever again going to dismiss my concerns. Or if they did, I knew it was their bad skills, and not my imagination.
So, after having to convince my family doctor that I needed to see a rheumatologist, I had a nice long wait of three months. She told me she thought it was Gout.
I figured out that you needed to say key words before anyone would pay attention. They are things like “swelling on both sides” “flu-like fever” feeling, “extreme fatigue”, “unable to perform normal duties” and list them. A big one was “stiffness for more than one hour”
I never had any indication that I had RA as far as the tests would show. They were all normal. I remember the rage everytime I heard those words. “negative”. I wanted to boot my own body down the curb. It was like it was hiding the disease from everyone but me.
The three months of waiting was torture. I had to have help to get out of bed, dress, and my blood pressure shot up to unreasonable no.s. My family doc gave me six weeks off work when she took my BP at the office. My body rebels with high blood pressure when I’m in pain. I can always tell when I’m going to flare by the high readings. (Ive had one doctor tell me this is possible and explained why, and another tell me that I’m nuts)
The rheumy appt in Canada was such a disaster. Awful awful man. He didnt look at me, told me I needed prednisone and mumbled something like polymyalgia rheumatica and left. I didnt know he left, he just walked out. The nurse had to come in and tell me to leave.
I’ve since read his reviews on rateyourmd.com and he has a dismal record.
I spent a year on prednisone with him. No tests, no MRI, no xrays. I got worse and worse. My family was pressuring me to get him to do something. My family doctor was mad that I was on prednisone because it was making my blood pressure worse.
I told him I wanted a bone scan. He said I was being ridiculous, that I did not have RA, and no matter how much I insisted, it was not my diagnosis. Well, I finally got the bone scan. I had gone on the internet to find out what happens, what good results looked like and what bad results looked like on the scan.
I knew if there were bright white spots in the joints, symmetrical, that it was RA. I watched as every joint lit up like a christmas tree.
I could tell the technician saw what it was too. She treated me tenderly afterwards.
I told her, “I studied results and that is rheumatoid” She never corrected me.
That horrible rheumy never called me back. He would have had to admit it was RA, and wouldnt. I went and picked up my results and went straight across the border to U.S. rheumatologist.
I found a wonderful rheumy who held my hand and said: I quote: “I’m sorry you’ve had to suffer all this time, its obvious you have RA and we will put you on the drugs that will make you feel better immediately. She never charged me for the first visit. What doctor does that?
I should say that I never had obvious “hot red swelling” ..it just hurt a lot. Thats what the first rheumy kept saying to me “you have no swelling”. But the second doctor took one look at me and said “oh yes you have swelling ..here and here …and here. I was so relieved I could have fainted.
So it takes a skilled doctor to make a good diagnosis. ( I now have the red hot swelling that everyone can see, but it took years to actually be obvious) Now my tests are not negative either. Five years later. Can you imagine not getting meds for five years because I didnt have the proof?
She was right about feeling better. I had a short wrong turn detour with Arava, which made my hands and feet numb ( had to have EEG ..diagnosed with Peripheral Neuropathy) ..which is a known side effect of Arava. But now, I’m on methotrexate, and Enbrel and have had a pretty comfortable three years. Although now I can feel its wearing off ..I only get a day or two of fairly good pain relief.
I have been dealing lately with dry sore eyes, floaties and blurring. On to the next problem associated with RA!
Kay works as a wedding videographer. She can be found on Twitter @kaypros.
Hi my name is Leigh Ann. I am 33 and live in Texas. I have Rheumatoid Arthritis. I was officially diagnosed by a doctor with RA in October of 2008. This is my onset of RA story.
In September 2001 I was half way through my first pregnancy and experiencing extreme pain in both of my hips. My OB and all my friends and family told me it was just my body adjusting to being pregnant and preparing to give birth. I gave birth in January of 2002 and the hip pain did not go away. I should mention that I am blessed to be married to a physical therapist. My husband would take me to his clinic and do ultrasound, heat and various other things to help relieve the pain. I would temporarily feel better but the pain would always come back. Fast forward four years and through 2 more pregnancies, it’s February 2006, I had just turned 30 and delivered my third child. I was still experiencing bilateral hip pain, and now I had pain in my left shoulder, and persistent pain in my lower back. In July 2007 I finally went to the doctor and I chose a doctor that specialized in Allergy & Immunology, Internal Medicine, and Rheumatology. He took x-rays of my neck, left shoulder, lower back, pelvis, and hips. According to him the results stated that my neck was fine. Left shoulder was fine. Hips were fine. Pelvis was fine. My spinal x-ray showed that I had mild spondylosis at the L4-L5 level, mild degenerative facet arthropathy at the L3-L4 level, mild annular disc bulge at L4-L5, and several synovial cysts at the L5-S1 level. He gave me some NSAIDs and a pain patch for my hips and back. That was that… oh and I needed to lose weight as I was about 40 lbs too heavy so he sent me home with an ‘at home’ exercise routine.
By September 2007 I was experiencing pain in my wrist and some numbness and tingling in my hands and fingers. At the time I was finishing up my college degree long distance online. I spent a lot of time at the computer writing papers and emailing my classmates. When I started to experience wrist pain, first in my right wrist than in my left, my husband and I assumed it was carpel tunnel. It was Thanksgiving day 2007 and I was on the phone giving my sister directions to my new house and my hand went totally numb and I could no longer hold the phone. I switched hands and the pain in my hand when I gripped the phone was too much. I handed it over to my husband to finish talking to her. I was concerned and frustrated. By December 2007 I was still having pain in my neck, wrists, pain in my left shoulder, and now my hands were sore, my fingers were tender to the touch, I had lost 50% of my hand strength which caused me to struggle with holding a pen, to type, drive, and do most basic things, and I was waking up in the morning with my hands stuck in a claw-like form. My husband bought me a paraffin bath unit for my hands and every morning I would dunk them just so I could function. I was struggling with pulling the covers up at night, sleep was painful when it came. I was tired and cranky, frustrated and knew that there was something going on and I was going to figure it out.
I am the type of person who needs to know the details. I love to research things and frankly the details in things interest me a great deal. So I took my obsessive researching need-to-know trait and put it to use. I Googled, and searched and read everything online I could find about painful stiff hands and fingers. I did the webMD symptom checker; I went to every chat site and message board I could find that ever mentioned “painful, stiff, claw shaped fingers”. I came up with Rheumatoid Arthritis over and over again. I talked to my husband and he agreed with me that it seemed likely that I could have RA. I still didn’t know much about RA and I only had pain in my hands and wrist, I didn’t think that was enough for it to be RA. (at the time I didn’t tie in the pain in my shoulder, neck, back, or hips to be apart of the big picture). In January 2008 I went to see a hand and upper extremity specialist. He did a nerve conduction study on both wrists, and my shoulders. I had mild abnormal results in both wrists but nothing so far out of range to really indicate anything. He called it carpel tunnel syndrome and sent me to physical therapy (yes my husband is a physical therapist) and had a brace custom fit for my wrists.
Side note here… because my husband is a physical therapist I was ALREADY doing PT and I had been sleeping in braces and wearing them daily for almost 6 months. So to have this “specialist” just do the same thing that I have already been doing royally ticked me off.
Meanwhile in the following weeks I started to have pain and stiffness in my ankles. They were swelling and I was barely able to walk in the morning and climbing the stairs to get to my children’s rooms was next to impossible. In February 2008 I went back to the first doctor and he took x-rays of my wrists and found nothing “remarkable”. He also did a blood test to explore the possibility of RA. The results came back negative for the RF factor. I did NOT have RA. End of sentence – according to this particular doctor. So I took matters into my own hands so to speak and sought out another doctor. This doctor was a surgical radiologist; he used ultrasound to look at my hands, wrists and ankles. The results indicated bone erosions in my fingers and active inflammation in all of my fingers and both wrists and suggested that an MRI would be recommended. My ankles each had rather large ganglion cysts but “no indication of any inflammatory arthritis”
June 2008 I had I met with a neurosurgeon/spine surgeon for the persistent neck pain, L shoulder pain, numbness and tingling in my left arm and hands. He did a cervical MRI with contrast and one of my brain. He ruled out MS and various other disorders. He suggested I go to an orthopedist to have my shoulder looked at, as he felt that it was the source of my problem. I went to doctor number 5 in late July 2008. I had x-rays and an MRI of my should done and was declared to have a shoulder impingement and rotator cuff tear. In August 2008 I had shoulder surgery to repair it. I had extremely high hopes that this was the fix to my problem. Six weeks after shoulder surgery I was cleared from my orthopedist yet was still having hand and wrist pain. The neck pain was still present, the ankle pain was still present, the hip and back pain still there. BUT I DID NOT HAVE RA!
Every doctor that saw, I was tested for RA and was negative for the RF factor turned the page and said I must have fibromyalgia and/or carpal tunnel. By this time I had my very own personal pharmacy in my bathroom. I had narcotics ranging from both ends of the spectrum, and just about every name brand and generic drug that was up and coming at the time to deal with pain. I had officially been brushed off 4 times by doctors and referred to pain specialists. About this time my husband had switched offices and brought home several of his professional magazines. I was helping him discard them and for whatever reason I picked up one that had on the cover in small print in the bottom left corner “Diagnosis of early RA key to clinical management”. I stood over the trash can in my kitchen and read the article. It was like reading about ME! It talked about” 20% of RA patients being seronegative…will have no RF marker”. I drank in the information from this article and then at the end of the article it gave the information for the author, who just so happened to be a Staff rheumatologist at a local hospital near where I lived. I strongly believe it was divine intervention that I not only found that article but noted who wrote it.
I promptly handed the article over to my husband and went to search for the contact information for that doctor. I called and asked if they accepted my insurance, they did (yea!), I asked for an appointment and the next available was October 8th 2008 just 2 weeks away. By this time I was CERTAIN that I had RA and felt like I was just searching for a medical professional to agree with me and to help me with the pain. My husband went with me to my doctor’s appointment.
This doctor was like an angel. She looked me in the eye, she touched and felt each joint in my fingers, and she looked at and touched at every one of my major joints. Then she asked me some questions, and I will never forget what she said next, she said that we’ll get some blood in a few minutes but I really don’t need them to know your diagnosis, you have rheumatoid arthritis. You have 8 out of 10 markers for RA; I am surprised that nobody has caught this before. She immediately put me on prednisone and then set me up to come back in a couple of weeks to start on methotrexate.
Then 2 weeks after that visit I came back again to start my humira injections. October 8th 2008 I learned I officially had RA. I have been managing with some success since then but am still struggling with it as we all know RA doesn’t play by the rules. I recently switched from humira to enbrel and while it seems to have picked up where humira had left off I am not pain free. I am stubborn and relentless. If I hadn’t been I don’t know for sure if I would have ever gotten the correct diagnosis. I feel strongly that it God that put that article in my hands and it was His Grace that got me through the pain and discomfort for so many years.
It was not so long ago, that I said to my husband that I can’t really remember what it was like to have been in so much pain nor how I handled it with 3 small kids and faking a smile all the while. I am grateful for my doctor and the medication she has given me to have the life I have now back. While I’m not 100%; I still have hand/finger pain, and suffer with hip, shoulder, back, neck, ankle, foot and toe pain but it is not like it was before. I can walk and run quickly to an injured child if I must, I can climb the stairs to my children’s rooms, I can do most things now just with some modifications. I try not to take the good days for granted because I know a bad one is just around the corner. I hope that my story helps somebody out there to see that you don’t have to have the RF factor to have RA and if they are suffering and being brushed off, to not take no for an answer and to keep searching for the right doctor.
This is Vicky’s Rheumatoid Arthritis story, in her own words.
Hi my name is Vicky and I am 24 years old and live in Georgia. I was Diagnosed with RA about 6 months ago and at the time I was so glad to have an answer but knew I was about to be in for the longest roller coaster ride of my life.
It all began when I was 7 or 8 years old, I was a very active child but always complained of “hurting” especially in my hands and legs. When I was about 7, my mom woke me up for school one day and my ankles were swollen the size of softballs and I told her I couldn’t walk, I got out of the bed and fell down. She immediately took me to see my pediatrician, who did a full exam and tons of lab work that all came back normal. I had multiple episodes of this as a child and he continued to tell my mom it was normal just from “growing”. I continued to be a very active teenager playing soccer and cheerleading but still had a lot of aches and pains.
At 17, I started having severe problems with my lumbar spine and after seeing a specialist, we found out my L5-S1 disc had began to degenerate and we choose to have a lumbar fusion but no one could tell me why this was happening at such a young age.
I then began to have severe pain and swelling in my hands and feet, to the point where I had to run warm water over them in the morning just to move, so this year at my yearly physical with my GP he ran the routine lab work (ANA,RF,Sed rate,etc.) My labs came back, once again mostly normal, except a positive ANA. Now this scared me to death because my first thought was lupus. My mothers twin sister had recently passed away from having lupus and RA so needless to say I was scared to death.
My GP then refered me to see a Rheumatologist, who in my eyes has been a angel sent from heaven! She did some more labs and a full physical exam and said I definitely did not have lupus but I have sero-negative RA, and she believes it is Juvenile RA that was misdiagnosed which would explain all the pains as a child, the degeneration in my spine and all my joint pain.
I was immediately started on Prednisone,Plaquenil and Diclofenac. After about 2 months I was only seeing minimal relief so she added MTX 4 pills a week. I had horrible nausea and abdominal pain and ended up having to have my gallbladder removed. She then switched me to MTX injections which I just started this past week and I am hoping to see wonderful results if I could just get through the night sweats that come with it!
It is so hard being 24 and recently married having this disease. My husband and I actually argue a lot more now, because he says I never feel good and I can’t use that as an excuse for everything, but it’s just so hard for the both of us because he just doesn’t understand. I am hoping the new year will bring health and painless days to my future.