Home Community Member Stories Kari's Story

Kari's Story

kari_evasiuk@owfg.com 

Hi Everyone,

Gee, what category will you put me in? I don't know what I have. I've been poked and prodded and disgusted by the medical community.

First the good stuff. I just got married in February to the most wonderful man in the world, who has had RA for 15 years and has damage in his elbow, wrists and ankle. I'm 44 and I have 3 kids from a previous marriage who are 21, 18 and 16 and they're great kids ... I'm proud of them. I also work full-time as a systems analyst.

About a year and a half ago I started having problems with my right elbow & shoulder. I was diagnosed with tendonitis of the shoulder, bursitis and tendonitis of the elbow. My elbow was red and swollen out about 2 inches. I looked like popeye (LOL).

Then other places started becoming sore (knees and hands) and I was feeling very tired and sick. I went to a clinic and was given Prednisone and it was miraculous. Everything disappeared and I felt great. That was last November. I really thought it was gone. It started coming back again in around May this year. Slowly, it has gotten worse and now I'm worse than before. It's also changed somewhat. I have stiffness in the morning that makes it impossible to get ready for work. Sometimes the stiffness lasts all day. I have a lot of pain in the evening too and sometimes my joints get stiff after resting. I rarely have any swelling, but when I do, it's huge. However, my hands are 'bigger' and my rings have gotten too tight. My feet too. My shoulder is just awful and it grinds so bad that you can hear it when I move. My knee too. The worst problem is the fatigue. All I do now is work and go home and rest. I've also lost my appetite and have lost some weight. Another thing that's new is that my hands feel like they are contracting ... I feel a 'pulling' sensation so that my hands want to close and I don't know what that is about.

I've also developed Raynaud's. It makes my hands, knees and feet very sensitive to temperature change and can go from ice-cold to very warm in seconds. I believe this has impacted the diagnosis process. 

I've never had x-rays. They don't test my blood anymore. I have positive ANA but it's low. Synovitis has shown on a scan but the doctors pooh-pooh that. I've been told I have fibromyalgia but I don't believe that. I've never slept better in my life and sometimes even sleep 10 hours. I sleep so deeply now that I sometimes sleep right through the alarm and it wakes my son down the hall. He has to come and awaken me. So, I don't see how they can say I have fibromyalgia. Plus you need to test positive for 14 out of 18 tender spots, and I only test positive in 6. So, go figure that one out.

I don't know what to do anymore. I hurt all the time, but it fluctuates a lot. Some days I'm really fine and other days I'm almost incapacitated. Sometimes it's my hands that are bad, or my wrists, or my elbows. It never stays in one spot, except for my shoulder.

Having said all of that (whine, whine), I actually have a wonderful life. I miss being active but I don't have the energy to try anything. I take 400mg of celebrex a day and that helps a lot. I guess I'll just forget about a diagnosis for now. Either it will get better or worse. Time will have to tell, I guess. Thank goodness for my husband (who believes I have RA).

Talk to all of you soon,
Kari

11/27/00 UPDATE:

Hi Everyone,

I thought it was time to update this. My name is Kari and I was diagnosed two months ago with Seronegative Rheumatoid Arthritis. My doctor started me on Doxycycline, and I'm on 400mg of Celebrex. I believe I'm starting to see some positive effects, but time will tell for sure. Thanks to all of you for helping me before I found this wonderful doctor. Your information and support was invaluable, and the biggest question you asked me was "If you've been diagnosed with an auto-immune condition, why aren't you getting treatment". That, along with other feedback from you, inspired me to seek a new doctor and the rest is history. OK. History ... I'll get to that ...

First the good stuff. I just got married in February, 2000 to the most wonderful man in the world, who has had RA for 15 years and has damage in his elbow, wrists and ankle. I'm 44 and I have 3 kids from a previous marriage who are 21, 18 and 16 and they're great kids ... I'm proud of them. I also work full-time as a systems analyst.

About a year and a half ago I started having problems with my right elbow & shoulder. I was diagnosed with tendonitis of the shoulder, bursitis and tendonitis of the elbow. My elbow was red and swollen out about 2 inches. I looked like popeye (LOL).

Then other places started becoming sore (knees and hands) and I was feeling very tired and sick. I went to a clinic and was given Prednisone and it was miraculous. Everything disappeared and I felt great. That was last November. I really thought it was gone. It started coming back again in around May this year. Slowly, it has gotten worse and now I'm worse than before. It's also changed somewhat. I have stiffness in the morning that makes it impossible to get ready for work. Sometimes the stiffness lasts all day. I have a lot of pain in the evening too and sometimes my joints get stiff
after resting. I rarely have any swelling, but when I do, it's huge. However, my hands are 'bigger' and my rings have gotten too tight. My feet too. My shoulder is just awful and it grinds so bad that you can hear it when I move. My knee too. The worst problem is the fatigue. All I do now is work and go home and rest. I've also lost my appetite and have lost some weight. Another thing that's new is that my hands feel like they are contracting ... I feel a 'pulling' sensation so that my hands want to close and I don't know what that is about.

I've also developed Raynaud's. It makes my hands, knees and feet very sensitive to temperature change and can go from ice-cold to very warm in seconds. Very annoying.

My doctor said I was lucky to be diagnosed early on, because that means the option of using Doxycycline was open to me. However, he's been watching very carefully to see if there is any improvement, and up til now there hasn't been. He was going to reassess tomorrow to see if I needed something more aggressive, I'll be happy to report that I think I've been
feeling better. I've had a few days where I'm moving pretty freely in the morning, while other mornings there is little improvement. Also, I feel more energy and am moving easier. The pain is still there but I think it's not as 'in my face'. So, I'm really starting to believe that this works.

Outside of the RA, I actually have a wonderful life. I miss being active but maybe I can get back to some form of exercise one day (hopefully fairly soon). There is a light at the end of the tunnel.

Talk to all of you soon,
Kari