My Name is Jo. I Have Sjogren's Syndrome
Dec 11 '03 (Updated Feb 09 '04)
The Bottom Line I hope this has been informative. It has been helpful for me to write this.
I knew something was wrong. My feet hurt me. Not in a “I overdid calf presses in the gym” kind of hurt. This was burning, pain, strange feelings when I walked. I started noticing this last spring. During my routine physical during the summer I casually commented to Dr. S, my Primary Care Physician, that my feet hurt me. He ordered x-rays and blood work to rule out diabetes. The x-rays showed the possibility of arthritis. Diabetes was ruled out. Dr. S. ordered a bone scan and more blood work. I am very lucky to have good health coverage and good health care. I thank G-d every day for this.
The result of this blood work was a little scarier. The numbers for Rheumatoid Arthritis and related issues were higher than they should be. Dr. S. called me and told me that the numbers were just borderline but he wanted me to see a Rheumatologist. My husband and I did a lot of research finding the right doctor. Dr. M works out of New England Medical Center in Boston. I was able to get an appointment quickly so my husband and I drove into Boston for what I was hoping (I was in total denial until my second appointment with her on December 5.) was hearing that my numbers were slightly elevated and there was some evidence of arthritis. The end, go home, live normally. I actually thought that was what she said though my husband heard it very differently. Dr. M did a very thorough physical exam; she looked at my test results and asked me questions about my symptoms.
When it was time to discuss her findings with me my husband came into the room. She said that she wanted to do her own blood work to be tested at N.E. Medical rather than my local community hospital. She was puzzled over one of my symptoms, which was a swollen hand and painful wrist on two occasions. I thought she said I had tendonitis. She was referring to the pain in my thumb I have since a fall a couple of months ago. I left thinking this was all in my head. I left thinking I was imaging these things and that they were just normal “goings on” in my body.
I really knew how special a doctor she is when she called me at home 3 days after this blood work was done. She wanted me to know that it appears I don’t have lupus but she hadn't ruled out anything else and asked that we talk about it in person. I had an appointment on March 5.
Dr. M is in a wheelchair. She sat in front of the computer and asked me to look at the results of the blood tests. After looking at the numbers I sat down. She said, “You have Sjorgen’s Syndrome.” I said, “I have what?” and asked her to spell it. I had no idea what this was but I was in such shock because I didn’t like the sound of it that I never asked her what it is or what the prognosis is. She kept saying that I should be careful in my reading about the disease because there are some horrific stories on the Internet. She reiterated that I had Sjorgen’s with a small s. Dr. M knows I have panic disorder. Stress is not good for autoimmune disorders.
More blood was taken from me and I made an appointment for 3 months. Last night she called me to tell me that she is certain I have Sjorgren’s (I already bought The Sjogren’s Syndrome- A Practical Guide.) and probably Rheumatoid Arthritis.
Sjogren’s (pronounced Show-grens) Syndrome is an autoimmune disease that causes dryness particularly in the eyes and mouth. It can cause problems in other parts of the body such as joint inflammation, inflammation of the lungs, kidneys, liver, nerves, thyroid gland and skin. It can cause fatigue, a dry cough, difficulty swallowing, swelling, cavities, dry nose, throat, lungs and pain. (I now know that I wasn’t having a heart attack. This disease is causing the chest pains.) The cause is not known, heredity (There is no indication that this exists in my family though my children have an autoimmune disorder called Reynaud’s so it must be somewhere just never diagnosed.) and viral infections may play a role.
In autoimmune diseases the immune system doesn’t function properly and can no longer tell the difference between some of the body’s own cells and foreign substances, such as infections and viruses. Rather than fighting the foreign substances, the immune system mistakenly fights the body’s own cells.
I have read varying numbers regarding the prevalence of this disease. Arthritis.org says that 1 million people have it. The book I mentioned said 4 million which is greater than those with Multiple Sclerosis.
There is medication but no cure at this time. The best way to treat Sjogren’s is with over the counter medications, (My doctor said I am not ready for the heavy-duty meds.) exercise lots of water, saline nose spray, humidifiers, eye ointments and visits to the dentist. It primarily affects women over the age of 45 and rarely anyone under the age of 20.
Rheumatoid arthritis is also an autoimmune disease. (Both these are also considered one of the 100 forms of arthritis.) It involves inflammation in the lining of the joints and/or other internal organs. RA typically affects many different joints. Both diseases are chronic, last a long time, and can be a disease of flare-ups.
I am no longer in denial. Dr. M is sure I have Sjogen’s. She is not sure (nor does it really matter- Arthritis.org says there is a primary and secondary Sjorgen’s) if my RA is part of Sjogen’s and thus I would have Sjorgen’s as a Secondary disease or a disease all on its own. The book referenced above says that the medical community is getting away from distinguishing between primary and secondary not using these categories anymore.
Many of you know me well. You know I’m handling this well primarily because I may still be in some denial. I don’t know how this could happen to me but then again I could ask why it wouldn’t happen to me. It has changed my life, though. One day I had a hard time getting up 5 steps; several times I have had trouble swallowing, my feet burn and I’m having a very hard time finding any type of comfortable shoes. I can’t be in denial because I can’t fight this if I am. I still have mountains I intend to climb and trails to hike and bike.
I think of Sjogren’s Syndrome as a silent disease because the symptoms can be elusive, varied and at times in remission. Some think it resides in the body up to 6 years before the full-fledged Syndrome is evident.
I have written this as an informative piece. Please don’t tell me you are sorry for me. Stuff happens. This happened to me. It could be worse. I could be dead. Right now I’m alive and I intend on living every day as fully as possible and most importantly not put off anything until tomorrow. As Lee Ann Womack sings, “Promise me that you'll give faith a fighting chance, and when you get the choice to sit it out or dance, I hope you dance.” I intend to keep on dancing.
While looking for a support group on line I couldn't find one specific to Sjogren's so I made one! Actually I made two, but one is generic.
http://groups.msn.com/SjogrensSyndromeSupportandForum
This forum is only for those diagnosed with Sjogren's or have a loved one who suffers with the disease.
http://members.tripod.com/jobythebay/
Click on the link Jo's Health and Fitness Forum
Please join me at the health, exercise and autoimmune forum I have started. This is a general board unlike the one above.
Direct links are on my profile page. Thanks..jo
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