Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I know a lot of people come here asking "Could this be RA?" or think they have RA and are convinced by doctors they're crazy.
I'm hoping this will help someone, because early on you spend a lot of time thinking you're crazy too.
So. Here's my story - shortened - for what it's worth.
January of 2013 I started a new job, where I spent most of the time on my feet. My previous job involved mostly sitting. Almost immediately I was suffering from arch pain and heel pain that became all over foot pain. I thought it was plantar faciitis. My family PCP's PA did too. I switched shoes, wore compression socks, took Advil, taped at night. Tried everything.
By March it was worse. My PCP's PA gave me steroids which provided a lot of pain relief. He looked confused and said "That's weird. Steroids almost never work for PF." Shortly after, the pain was still all over my feet and heels. Then intense pain focused in the MTP joint of my right foot's 2nd toe, and my left hip. Everyone said maybe it's because you're walking funny. Somehow I knew something new was going on. I was in so much pain I went to an urgent care center. The PA there looked worried, and drew a bunch of labs, including RF. The only thing that was abnormal was my ANA, and it was only a little elevated. That still landed me in at the first rheumy's office. All labs were normal. He blew me off.
At this point, it felt like I was walking on marbles at best, sharp glass at worst. My heels felt like the were going to poke through my skin. The SIDES of my heels hurt. My ankles hurt. It all seemed like tendons and joints.
May, June, July... things stayed mostly the same. The pain in my feet was relentless. My hips hurt too. I was desperate. I could barely walk, and often slept on my couch instead of making the trudge upstairs. And I was so very tired.
In August everything took a vicious turn. The joint pain spread to my knees, fingers, thumbs, and wrists. I was being stabbed repeatedly. This time I saw my PCP. He looked sad, and said "You have RA." I replied that I had no abnormal labs. He said "Yes you have - your ANA - and you may not have converted yet." Bless him. He was my only supporter.
I went to another rheumy, who I still curse today. She was recommended by two RA sufferers I know at work. This lovely person told me to come back in six months. Six months. She refused to keep me on steroids. I couldn't walk. She told me to start exercising again. I cried in my car all the way home. Then I called my PCP, who told me to try one more rheumy, the one he uses a lot.
The third rheumy in three months seemed skeptical, but was willing to keep me on low daily doses of prednisone, and "watch me closely." From October '13 until April '14 he drew labs once, and they were negative again. The controversy of swelling came up every visit. He said "You could be seronegative, but you don't have swelling." I told him every time that I did, it just isn't dramatic. Everyone who knew me could see it. He was not impressed. He didn't totally dismiss me, but he wasn't supportive either.
THEN, two weeks ago, I had had it. I was back in too much pain despite prednisone, naproxen, and ultram. He said "Let's do a nuclear bone scan." And BINGO, it showed too much uptake in my hands and feet. Today I am holding at a diagnosis of "possible mild RA."
For the last year I have been on prednisone, ultram, diclofenac, Mobic, and naproxen. Currently I take 7.5 mg of pred, 400 mg Plaquenil, and a ton of Naproxen and Ultram every day.
To reiterate...
I have only had subtle swelling.
I have not had a positive CRP or RF test.
It did not start in my hands.
Best of luck to anyone who is struggling. Get as many supporters as you can.
I'm hoping this will help someone, because early on you spend a lot of time thinking you're crazy too.
So. Here's my story - shortened - for what it's worth.
January of 2013 I started a new job, where I spent most of the time on my feet. My previous job involved mostly sitting. Almost immediately I was suffering from arch pain and heel pain that became all over foot pain. I thought it was plantar faciitis. My family PCP's PA did too. I switched shoes, wore compression socks, took Advil, taped at night. Tried everything.
By March it was worse. My PCP's PA gave me steroids which provided a lot of pain relief. He looked confused and said "That's weird. Steroids almost never work for PF." Shortly after, the pain was still all over my feet and heels. Then intense pain focused in the MTP joint of my right foot's 2nd toe, and my left hip. Everyone said maybe it's because you're walking funny. Somehow I knew something new was going on. I was in so much pain I went to an urgent care center. The PA there looked worried, and drew a bunch of labs, including RF. The only thing that was abnormal was my ANA, and it was only a little elevated. That still landed me in at the first rheumy's office. All labs were normal. He blew me off.
At this point, it felt like I was walking on marbles at best, sharp glass at worst. My heels felt like the were going to poke through my skin. The SIDES of my heels hurt. My ankles hurt. It all seemed like tendons and joints.
May, June, July... things stayed mostly the same. The pain in my feet was relentless. My hips hurt too. I was desperate. I could barely walk, and often slept on my couch instead of making the trudge upstairs. And I was so very tired.
In August everything took a vicious turn. The joint pain spread to my knees, fingers, thumbs, and wrists. I was being stabbed repeatedly. This time I saw my PCP. He looked sad, and said "You have RA." I replied that I had no abnormal labs. He said "Yes you have - your ANA - and you may not have converted yet." Bless him. He was my only supporter.
I went to another rheumy, who I still curse today. She was recommended by two RA sufferers I know at work. This lovely person told me to come back in six months. Six months. She refused to keep me on steroids. I couldn't walk. She told me to start exercising again. I cried in my car all the way home. Then I called my PCP, who told me to try one more rheumy, the one he uses a lot.
The third rheumy in three months seemed skeptical, but was willing to keep me on low daily doses of prednisone, and "watch me closely." From October '13 until April '14 he drew labs once, and they were negative again. The controversy of swelling came up every visit. He said "You could be seronegative, but you don't have swelling." I told him every time that I did, it just isn't dramatic. Everyone who knew me could see it. He was not impressed. He didn't totally dismiss me, but he wasn't supportive either.
THEN, two weeks ago, I had had it. I was back in too much pain despite prednisone, naproxen, and ultram. He said "Let's do a nuclear bone scan." And BINGO, it showed too much uptake in my hands and feet. Today I am holding at a diagnosis of "possible mild RA."
For the last year I have been on prednisone, ultram, diclofenac, Mobic, and naproxen. Currently I take 7.5 mg of pred, 400 mg Plaquenil, and a ton of Naproxen and Ultram every day.
To reiterate...
I have only had subtle swelling.
I have not had a positive CRP or RF test.
It did not start in my hands.
Best of luck to anyone who is struggling. Get as many supporters as you can.
I am wondering...you said you "take a ton of naproxen and ultram every day", along with pred. and plaquenil. It sounds like plaquenil is not getting the job done, and if that's the case, then RA is doing more damange to your joints. After a year, maybe it's time to demand an mri of the worst joints from your doctor, and, if you're willing, add a more aggressive DMARD. Thanks for the story!
Daffodils,
Whoops... a detail I left out. I started the Plaquenil last week. But thank you so much for pointing that out! Love how we help each other 'round here.
RA Warrior has a nice selection of RA onset stories. I combed through lots of them a few months ago, looking for stories like mine. Found plenty of similarities, but everyone's story is still very individual, isn't it?