When Pain Means More

By Amanda Workman

3 min read

When living with chronic pain, sometimes we end up missing the important signs our bodies are trying to give us. Pain is one of the ways our bodies try to tell us that something is wrong. When you consistently feel horrible, it is hard to know when it is simply normal pain or when there is a new issue that needs to be tended to.

Strike one

Unfortunately, I have been dealing with chronic pain since the age of 14. At that time my migraine was episodic but I was dealing with severe and uncontrolled endometriosis. No doctor wanted to diagnosis somebody so young with endometriosis, so I was constantly told that I was just being a baby over regular period pain. So for two weeks I dealt with extreme pain, thinking this is just the endometriosis and I have to push on, until I almost collapsed in the middle of an AP exam. My sister was called to check me out of school and we met my mother at the Emergency Room. I had a cyst the size of a grapefruit in my right ovary which closed off a ureter tube and cause an infection. Since I ignored the pain, the infection got into my blood. By the time we were able to go home, it was only with a stent in my arm for IV antibiotics my mom had to do several time a day. This was the first time that having chronic pain led me to ignore pain that was supposed to be a warning sign.

Strike two

Last year I had about two weeks where I felt slightly more achy than usual. Since I have fibromyalgia, it is extremely hard to determine when you are having a ‘fibro flare’ or when you are coming down with a cold. The weekend of Halloween I had an extreme migraine and stayed in bed all weekend. In the middle of the night Sunday, my husband woke up and checked on me. He didn’t know why but I was breathing funny and in way too much pain, so he went against our normal “don’t waste time on the emergency room” moto and took me to an urgent care his boss had used. Next thing I know it is fifteen days later and I am waking up in the hospital on a ventilator. I had managed to get an extremely bad case of pneumonia and did not know it. When my husband took me to the urgent care my lungs were so full of fluid, the doctor told him my lungs would not have lasted a few more hours.

Yes, strike three

I chipped a tooth two weeks ago but did not have any pain inside my mouth so I didn’t pay it much mind. Then it broke significantly last week so I called around to find a dentist that could see me sooner rather than later. Granted all week my head was way worse than usual and my migraine abortive medication was not touching the pain at all. I was able to see a dentist on Friday. Not only does the tooth need to be removed but there is an infection and an abscess as well. Apparently my extra bad headache was from the dental issues and not just my chronic migraine pain. So then I received the lecture several times about how dangerous dental infections are because they can get into your blood and be fatal.

Sigh… guess I am a slow learner

Obviously I am still here today but I do have to say for several of the people who love me it has been entirely too many close calls with my health. This is a huge part of the struggle with chronic pain conditions, it is so hard to know when it is your “regular pain” and when it is a “different pain.” We get judged so much by other people for being in so much pain normally that we become hesitant to run to the doctor at the first sign of something possibly being wrong. It is definitely not a good thing because it can easily put our lives at risk. This makes it ever more important to have a support system, it doesn’t matter if they are in person or virtual (from an online support group) but it is very helpful to have somebody to symptom check with you. A person you can bounce thoughts or concerns off of when you are unsure about it yourself. When in doubt, remember the chances I ended up taking and go to the doctor. It is better safe than sorry!

Have you ever had any close calls like these? Have you learned a method for determining when you need to seek a doctor’s opinion?

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sysad Member
Thank your for the great article. I feel for you. I am a recent chronic migraine sufferer and have been on again off again with fibromyalgia the last two years. My pain level is pretty high and my pain tolerance is pretty high. I feel for those longtime migraine sufferers, there is so much to learn. Like you, I broke a crown a couple weeks ago, called the dentist for an appt, asked if I was in pain, said no, and they got me in 3 days later. Dentist took one look at my tooth and said why didn't I come in sooner, the tooth was broke and the nerve was exposed, it had to be painful The tooth pain didn't rate on the migraine scale. I had a sinus infection from allergies, didn't know it, my migraines sometime cause a running nose and drainage. A week on antibiotics. Sinus infection gone, but no change in my migraines. Migraines cause so many different things, I don't know which is which. Trying to educate myself. Articles like yours help me realize that I'm not alone and might not ever figure it out. Thank you.
grammayumyum Member
Ditto on the abscessed tooth. It felt like a migraine. Ditto on the sepsis. I was hospitalized at death's door for a week, then had to come back to the hospital every day for 10 days for IV antibiotics. It felt like a moderate cold. I had another systemic infection for months before Dx, because it wasn't any worse than my daily pain. I've also had trigeminal neuralgia for many years. It was finally diagnosed during a flare that was similar to an intense migraine. My doctor at the time, whom I counted as a dear friend, lovingly chewed me out, telling me that not everything is related to existing diagnoses. He told me to keep searching for answers and asking questions. I'm always in pain with chronic migraine, fibromyalgia and other diagnoses; my pain is always a minimum of 6-7. I've put up with so much pain for so many years, sometimes I have to remember what my doctor said, step back, and ask myself if this could be something different. My former doctor is now deceased. I live in a small city now instead of a small town. Doctors come and go so quickly that there is no time to build a relationship with the doctor, so s/he knows you well enough to know that something new is happening. I'm now seeing the 8th doctor since 2011. They come for a year (often less) to this rural area to help pay their medical school debts and leave. I make a 12-14 hour round trip over 2 mountain passes every 6 weeks for migraine treatment. Maybe I need to find an internal medicine specialist at the same location, and only see local docs for acute care.... Thank you for the reminder to be our own best advocate and friend, to check in on ourselves and be aware of our symptoms, instead of always trying to tough it out.
mason1776 Member
I had the same exact problem you described in Strike One! My doctor gave me meds to resolve the ovarian cyst. Then I had to have a hysterectomy (uterus only because of my age] to resolve the endometriosis. A few years later, I had similar symptoms. I wrote it off as pain from scar tissue. My doc said this might happen. Pain continued to worsen. I drove to my primary care doctor. She said it was likely appendicitis. I wasn't allowed to drive to the ER which was only a mile away. ER doc looked at me and asked if I still had my appendix. Yep. Had to drink barium and wait for 2 hours. Had the CT. Appendix was fine. Had to go back to my OB/GYN. Second operation to remove my ovaries and fallopian tubes. Upside was that she took my appendix while she was in there so no more worries about that! Guess I'm a slow learner, too. 🙁
angiestl Member
I, too, have let a health problem that mimicked something I already suffered with almost kill me. I have always had digestive problems, of just about every possible kind, from beginning to end! So when I got a stomach bug, I thought no big deal. After several days, I was starting to have more problems, including pain every time I moved, to the point that I could barely breath. I was in an ambulance by 5 pm that day. My heart rate jumped to 165 right before we got to the hospital, so I was taken to the "heart" room once we got there. By 1am I was admitted to the hospital and sent to ICU, mostly because they weren't sure exactly what was wrong with me that first night. It came back that I had <a href='http://C.diff' target='_blank' rel='noopener noreferrer ugc'>C.diff</a>, which is on the super bug list, since it's easily spread but hard to kill. After two days in ICU, they decided to send me to a regular room, and after 3 or 4 days there, my heart stopped. Obviously they were able to get it started back up, and again the next two times it stopped. I remember feeling like I was going to pass out, and it seems like I heard some of the talk between resuscitations, but even most of that3-4 days in a regular room seemed like a day or day and a half to me. I was put on a ventilator for a week and kept sedated throughout that time. It was decided that I was suffering from sepsis. Once I was taken off the vent, I barely remember the first day, it actually is mixed in to my "coma dream" as I call it. From the second day on, I remember most things, but my already faulty memory was affected by the "sudden cardiac deaths". I've tried to make it to all of my appointments since this happened, but I too have some serious dental conditions. I'm worried about what damage the dental problems are doing to the rest of my body, but I know it will cost an arm and a leg to get all the oral surgery I'll need to fix it all!! On top all of that, I get several different headaches, fibromyalgia, a skin autoimmune which can really drag my body down, heart disease of some sort at this point, a pacemaker/ defibrillator combo, a connective tissue disorder and polycystic ovary syndrome. There's probably a few more, but I didn't want to seem like I was bragging!! 😉

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