When you have chronic pain, and then you become sick

A few days ago I was diagnosed with C. diff. I never really heard much about C. diff outside of acquiring it in a hospital setting or people of advanced age contracting it. Oh, was I wrong. “Clostridium difficile (klos-TRID-e-um dif-uh-SEEL), often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon” (Mayo Clinic, 2018). It is commonly caused by antibiotic use and can attack even healthy individuals who have not taken antibiotics.

After being sick for about 8 weeks with worsening symptoms, I made my first trip to the doctor. I was prescribed antibiotics and didn’t have any issues. A few weeks after that, my symptoms worsened again, and I was hesitantly prescribed a second round of antibiotics. I say hesitantly because I understand the delicate balance of gut flora, but I was also really struggling with how long I had been sick.

Here’s the thing, anyone with chronic pain and chronic illness feels much worse when sick. I normally feel like I got hit by a truck. When I’m sick? Two trucks. After 2 months of feeling so much worse than I normally do, with symptoms waxing and waning only to get worse, I agreed to being treated with antibiotics.

In the middle of my second round of antibiotics I felt very off. The scary thing is I almost dismissed my symptoms as an IBS flare. I figured that my symptoms were probably caused by the antibiotics, a common occurrence for many people. But after no sleep, intense full-body muscle spasms, hot sweats, cold sweats, a worse than normal migraine, worse than normal stabbing pains in my stomach and bladder, and frequent diarrhea, it was clear this was pretty intense.

The next day, I called my mom (because that’s what you do when you need comfort and want to feel sorry for yourself just for a bit!). I knew I should go to the ER but I didn’t want to so I called to get her opinion. I didn’t want to feel like I had to defend myself at the ER and explain how I’m not a “frequent flyer pain patient” and I’m not here just for pain meds (I’m not even on pain medication anymore due to what it did to my stomach!). I also figured the ER would dismiss my symptoms and say I just have a chronic sinus and/or bacterial infection with an IBS flare. After all, that is what I was thinking. So why go to an overstimulating ER just to be told this? They would just tell me to stop the antibiotics, get some rest at home, and take off work. I can do that on my own, or so I thought.

At that point in the conversation, body feeling broken, no sleep, teary eyed, my mom said that she understood my concerns, but I needed to go to the ER. The director of where I work (who is a close friend) also said I needed to go as my symptoms sounded very serious. So it was decided. My parents came to my house so my husband could stay at work and off to the ER we went.

We arrived at the ER and there were well over 30 people in the waiting room. There was a 4-5 hour wait. At this point I knew I needed to be seen promptly. I explained my symptoms, but was pretty much dismissed as to them I probably seemed like just another person using the ER just for the stomach flu. Plus, with having chronic pain for 17 years or so, I have the uncanny ability to coherently speak and not necessarily look like I’m in extreme pain. From all appearances it certainly looked like I was over-exaggerating my symptoms, really when I was not. So we ditched the ER and drove across town to an urgent care clinic. I was seen within 20 minutes.

The healthcare professionals at urgent care were great. They didn’t assume that my symptoms were all just due to a flare in my normal conditions. They took vitals, blood, and a stool sample. I was given a pain injection, told to stop my antibiotics, take probiotics, stay hydrated, and go on the BRAT diet (I would pay for someone to smuggle me cheese right now!). It was made clear that if any symptoms worsen I should go to the ER. The next morning after the stool sample was fully processed, they called with the C. diff diagnosis and I was promptly given medication. Oddly enough, C. diff is treated with antibiotics. These antibiotics come with an extensive list of side effects and serious warning labels such as “may cause brain disease” and “has been shown to cause cancer in mice and rats with long-term use.” Not very comforting.

Looking at online forums and medical sites, I have learned a lot about C. diff. I do not know the road that lies ahead. I have a follow-up doctor appointment to discuss this. Many people have reoccurrences of C. diff. Some people die from C. diff. Others it takes years for their GI tracts to heal from C. diff. What I do know is that I am thankful this infection was caught early so I can be at home recovering instead of hospitalized, or worse.

I had to laugh because I for sure thought if something were to keep me off work it would be my adrenal gland dysfunction coming back, or a severe migraine or cluster headache, not C. diff. Out of all the things to set this pain warrior back! To think!

My hope in writing this is twofold. 1.) I hope my story can help others learn more about the risks of antibiotics. 2.) Most importantly, do not dismiss any new symptoms as just one of your pre-existing conditions flaring up. As always, everyone is different, so discuss your concerns with a trusted medical doctor.

I am currently going in between two states of thinking: “practice what you preach, you have 20+ other medical diagnoses that you’ve been handling, you can and will handle this too” and “omg I could die and I’m still not in the clear! This has just begun! What if I need to be hospitalized for 45 days like some people?! I have patients to see! What if I can never have cheese again?!” This type of catastrophizing doesn’t help. So I take some deep breaths and remind myself, pain warrior, one day at a time.

by Dr. Melissa Geraghty, Psy.D., Chronic Pain Patient 
Rago & Associates
International Pain Foundation Medical Advisory Board, 2016-2017 iPain Featurette, 2016 iPain Hero of Hope Award Recipient
National Association of Anorexia Nervosa and Associated Disorders (ANAD) – Board Member
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