Image via Wikipedia Many of you that come here to my blog live with chronic illness(es) like I do. For each illness, there are symptoms that are expected, identified and the subject of treatment.
For example, fibromyalgia causes body-wide pain, fatigue, problems sleeping, impaired ability to recover from exercise, headaches and fibro-fog.
Over time, I have come to accept the presence of these symptoms as part of my daily life.
But then there are the weird symptoms that pop up from time to time that are related to our chronic illnesses. I've come to see them as little surprises or "unadvertised specials." With time, I've learned that some of these new symptoms are associated with flare-ups and illness exacerbation. Others, according to the medical professionals that I have seen, are logical parts of the disease spectrum, even if my fibromyalgia books, trusted online resources and doctors don't happen to mention them.
One such illness-related surprise is my occasional problems with swallowing.
This little "unadvertised special" started appearing a few year into my life with fibromyalgia. After many bouts of choking, I happened to mention this problem to my sleep specialist, who sent me for a swallowing study. What I learned from the study was that when I eat solids and liquids together, sometimes the liquid sneaks past my tongue and down my throat before I am ready to swallow. The speech therapist I was then referred to for treatment said this makes sense: fibromyalgia effects muscles and my tongue is a muscle too.
After several sessions, I learned some exercises to help reduce the problem. But every once in a while, if I am not careful, the problem can rear its ugly head, like last week when a whole mouth-full of diet Coke when down the wrong tube. (Gasp! Bleck! Cough, cough cough! Ugh!)
So this week I want to know--what illness-related surprises bug you? What unusual symptoms have you developed? What "unadvertised specials" came along with your diagnosis and what have you done to cope with and manage them?
Leave a comment here and let us know your answer to this question. Or head over to the Oh My Aches and Pains! page on Facebook to leave a comment and join in on the discussion.
I admit that I have a bad habit of typing my symptoms into Google and trying to diagnose myself. It's not about wanting to discover more things wrong with me. I just want to understand some of the more annoying symptoms that pop up from time to time without having to send an e-mail to my doctor.
What's my hesitation in contacting my doctor?
It's probably because in the last e-mail I sent I told her about my urine and feces turning deep reddish purple after I ate beets. The Internet told me that it might be a sign of iron deficiency, so I wrote and asked her about it. When my doctor wrote back and told me to enjoy eating the rest of the beets I had in my frig, I felt like I asked a stupid question and wasted her time.
So here I am over the past few weeks consulting Dr. Google instead, which has its own unique set of problems: Misdiagnosis: Crohn's disease
So over the weekend, when I had GI tract pain and a canker sore, I put those symptoms into the search engine and came up with Crohn's disease or ulcerative colitis. Of course, going back to the eMedicineHealth website today to write this post, I see I missed the part where it said that recurrent canker sores are a sign of these two diseases. After those search results, I decided I needed to focus on some self care and leave the Internet alone. Needless to say, the GI tract pain cleared up after a day of the BRAT (broth, rice, applesauce and tea) diet and the canker sore, which was very small to begin with, cleared up in about 48 hours.
Unnecessary Worrying: Loss of Smell
I tweeted with an acquaintance of mine last night on Twitter who happened to mention that for the last two years she's experienced a loss of her sense of smell. Wanting to help her, I Googled loss of smell, which took me to a nice link over at MayoClinic.com. The smart people there posted a disclaimer with their information:
Causes shown here are commonly associated with this symptom. Work with your doctor or other health care professional for an accurate diagnosis.
Reading the information there, I learned that loss of smell is sometimes related to aging. Then I clicked in the Expert Advice link and learned that the beta blocker I take can be associated with loss of smell (and taste) as well. While these are both interesting factoids, my overactive imagination probably didn't need to know these things. The information was good for someone who actually has loss of smell and just TMI (too much information) for someone who doesn't.
Self Diagnosis: Eustation Tube Dysfunction
Over the past week or so, I have been waking up with a stuffed up left ear. It seems like just when my ear clears up, it's time for sleep again. I tried a bunch of self care things like a heating pad, cotton in my ear and inhaling steam as well as over the counter medications like Sudafed, Mucinex, ibuprofen and loratadine (generic Claritin.) Since the problem kept coming back, I finally decided to Google it.
I looked to see if a stuffed up ear was a symptom of thoracic outlet syndrome (only one hit) or a complication of using my CPAP machine (lots of hits.) I came across the term eustation tube dysfunction and many, many forum posts from people who say they suffer from it but get no relief from their doctors. Which got me thinking that if this continues, I am going to have to go see my doctor.
It just so happens that my CPAP supplier called me yesterday asking if I wanted a refill on my supplies, so I asked the staff person helping me if using a CPAP machine can cause ear problems. She asked around to the professionals in her office, including a doctor, and the verdict of her straw poll was no. She referred me back to my sleep doctor--smart girl that she is!
The only useful thing I found in all my searching is that if the ear stuffiness is cause by the CPAP, putting in earplugs while you use the CPAP machine can help to equalize the pressure in your ears. So I stuffed a cotton ball in my ear last night and found that it seemed to help a little bit.
The bottom line: I spent a lot of time searching, not really finding an answer, when I probably should have just picked up the phone and made a doctor's appointment.
My Verdict
The Internet is great for finding more information on conditions that you have been diagnosed with, but is a poor substitute for the advice of a doctor when you have new symptoms you are trying to figure out on your own. So I think it is time to end my affair with Dr. Google and go back to asking questions from my real doctors. I need to get over my embarrassment about asking stupid questions and trust that my doctor will let me know if I am asking too many questions and wasting her time. Although I suspect that if I am sending too many emails, she'll invite me to come in to see her before my next scheduled appointment to get checked out by Urgent Care.
So are you having an affair with Dr. Google too? Fill me in on all the juicy details in a comment...
Image via Wikipedia
