View Full Version : A taste of my own medicine - so to speak

06-18-2012, 05:50 PM
Iím a 38 y/o female and Iíve been in the US Air Force for 22 years. I am a Physician Assistant. A few years ago I noticed lots of weird little things going on with me that made me suspect something was wrong. I started to have worsening back pain, hip pain, knee pain and pain in may hands and fingers. While Iíve always had migraine headaches, I started to have worse headaches and they were different Ė kind of all over my head and sometimes for days. I started to have lots of GI problems. I tried to keep track of everything. It seemed almost cyclic. I would get a really bad bout of it all and feel awful and then I would feel fine for a while. I started to wonder if the stress of my job wasnít causing everything. I got a small hiatus from clinical practice to get another masters degree but instead of feeling better, I felt worse. I wanted to sleep all the time. I was sneaking naps at home and feeling ashamed that I was being so ďlazyĒ. The GI issues got crazy out of hand with a week or two at a time of terrible, unpredictable diarrhea and cramping. I would feel so horrible and run down Ė like I got hit by a train. My body ached. I had a colonoscopy but they told me it was fine. Meantime, I went to my doctor to complain that I couldnít think straight. I was forgetting everything. If we were going to Home Depot I couldnít remember the name of the store and Iíd say, ďwhen we get to the place with the orange sign I need to remember to buy light bulbs.Ē I would forget the name of people Iíve known for years. This scared the daylights out of me because my cognition is my livelihood.
The doctor didnít seem to take me very seriously and asked me if I was depressed. I was upset and offended. I muddled through and ignored all the weird stuff Ė rashes when I was in the sun, a rash on my face that wouldnít go away, pain everywhere Ė but one day soon after I came back to clinical practice, I developed lesions in my mouth. That was the straw that broke the camels back!!! The dentist said heíd never seen anything like them and wanted me to see my doctor. So, I marched right to the doctor and showed them and asked to be tested for connective tissue disorders. They too asked if I was depressed. I let them have it. My ANA came back positive 1:40 and so did my lupus anticoagulant test. Also something called a DRVVT was high. My lymphocytes are almost non-existent. Iíll be seeing a rheumatologist in a month.
In the meantime Iím dizzy, headachy and so tired I can hardly get through a normal day. I can hardly comprehend new information. I take notes about everything.
Iím scared to death. I canít live like this. I canít continue to work like this. I donít want to yell ďuncleĒ but at the same time I donít want to end up collapsing because Iím running myself to death either.
I donít know why I didnít see the signs sooner. My ďasthmaĒ has been so bad in the past year that theyíve doubled my inhaled steroid. I have so many symptoms I canít believe Iíve been denying them. I thought if I just kept going, kept working and pushing that I would feel better.
My best friend is always wanting me to go to Zumba with her. I go twice a week and then I hurt like hell after. She looks at me like Iím nuts when I donít want to go more often. My husband seems to think Iím super woman and expects so much more out of me than I know I can do. Why does everyone think Iím ok and keep expecting so much. In a huge way Iíll be glad to go to the Rheum and get my OFFICIAL diagnosis and be able to say ďleave me alone Ė Iím sick.Ē But, Iím also terrified of what it means for my life.
Itís comforting to be here and see other people with the same problems.
I was really beginning to think that no one else could understand. I truly sympathize with my patients that are ill and in pain. I guess I just never thought it could happen to me too.
Thanks for letting me join.

06-18-2012, 08:11 PM
hello, i am sorry you are having all this.
many of us go through the same hard to diagnose time.
please read a few of the older threads, they are our personal experiences with lupus.

your test results appear to indicate that you have some auto immune disorder.
but not being a doctor, i am not going to try to say which one.
even rheumy's, (who specialise in this field), often have trouble decifering our problems.

i wish you luck with your diagnosis.

06-19-2012, 12:19 PM
Hi Amy,

Welcome to WHL.
Most of us have been on the same roller coaster you are on , for years, until we got a diagnosis. Until then, try and hang in there. Once you have a diagnosis, the doctor will treat you and things do get better.
Hope you will get an answer and help soon.


06-19-2012, 04:14 PM
Thank you guys and gals. I know it sounds corny but I always try to find reason and meaning in the things that "happen" to me in life. Even if I don't see it immediately, I usually do eventually.
It was funny, today I saw a patient that had Rheumatoid Arthritis and Fibromyalgia. I spent a lot of time talking to her, trying to adjust her medications and just listening. She complained about how tired she always is. Believe me, I understand. She said, "If I could just do something about the pain and fatigue I'd be happy." Oh Brother - don't we all wish that!!! Then she thanked me for spending so much time with her - she said her doctors usually shuffle her off after 5 minutes and are always in a hurry. Well, maybe life is slowing me down for a reason!

06-19-2012, 04:19 PM
Hi Amy,
Welcome to WHL from an Air Force wife. We lived in SA and we still own a home there in Leon Valley. My hubby was at Kelly AFB before it closed and then moved to Security Hill at Lackland AFB. He's currently working on his PHD at the Naval Postgraduate School in CA, but we'll be returning to Lackland next spring.
My first rheumy was a military doc. He also wanted to dismiss my problems. He told me that Sjogren's doesn't even require treatment. Thankfully, my PCP didn't accept that and sent me to another rheumy, who treated me.
Are you Active Duty? Are you locked into seeing military docs? BAMC? If you can request to see a civilian rheumy, I highly recommend Dr. Emily Pineda.
She actually listens to her patients and makes every attempt to help you with pain or whatever symptom is bothering you the most.
We're loving our assignment in CA, but I will be glad to get back to her excellent care when we move back.
I'm glad to meet another AF person here. If you're still stationed there next spring, perhaps we can meet up.

06-19-2012, 05:53 PM
Hi Amy!

I'm waiting on a diagnosis. In fact, today was my first rheumy appointment after several years of symptoms too numerous to list. I've been on the doctor- hopping trail, the depression/anxiety train, and have also experienced the guilt you said you feel for being so "lazy." Even though my family is very supportive, I wonder if they don't think that at times. When I'm sick, I can't do anything. When I'm well, I'm afraid to do anything for fear it will get me too tired and I'll get sick again. I do want you to know, a physician's assistant is the first health care professional that actually listened to me. I have an undiagnosed seizure disorder and Hashimoto's disease. She actually connected the two, unlike two neurologists and two endocrinologists. Once she began treating me with thyroid medication, my seizures stopped. I have only had one since starting the treatment in February. She was also the first to check my ANA and subsequently refer me to the rheumy. I'm grateful to her, and I know the patient you spoke of is so grateful to you. You will be a better medical professional for having the health experiences you have had. Keep on giving the best care you can give. Treat the whole person and not just the symptoms. Good luck to you as you pursue your own healing. We are all in this together!

Much love,


06-20-2012, 12:37 PM
Hi Amy,
I'm a newbie too and in healthcare as well so I can relate. It's overwhelming to suddenly be the patient when we're so used to taking care of others. i was diagnosed 24 years ago and it is a very scary! I was like you are; it was scary to get the diagnosis but for me, living in limbo and not knowing was even worse. I don't have any magic words cuz I'm struggling with it as well; just wanted to say hi and wish you luck with your rheumy appt. and hope you get some answers hrellsoon!