Didn’t think it would take me this long to post again, but here I am 12 days later. To put it simple, my health is bad…really bad. I’ve been under the weather with a sinus infection and extreme pain from fibromyalgia for over a week now. I’d take a permanent sinus infection year-round over my fibromyalgia though…yes, it’s that serious.
I’ve been out of work since mid-November last year and miss it so terribly. As a teacher, I can’t help but stress over all my students are missing, though my school has been very helpful with ensuring my students’ needs are being met. The same was true for my students last school year when I was out of work starting in January 2016. It was then a year and a half ago my health went downhill rapidly. Honestly, my health has never been superb but I’ve always been able to manage fine. I tried really hard to return to work but my body couldn’t withstand the stress so I had to go back on short-term disability until the end of the school year in 2016.
My advice: Always go with your gut feeling when you think it’s time to consult a doctor over your cold.
I thought I was battling another bout of bronchitis, coughing regularly, having trouble breathing, and some tightness in my chest. It was all symptoms I’d had previously with bronchitis. So before returning to school from Christmas break on Monday, I decided to go to the urgent care that Sunday.
After reviewing the lengthy, time-consuming paperwork I filled out at the urgent care, the nurse consulted the doctor. Both were seriously concerned and sent me straight to the emergency room. I was dumbfounded. Again, I thought it was bronchitis or at worst walking pneumonia. I figured the doctor would listen to my breathing, give me antibiotics, and send me on my way. But there I went down the road to my local hospital’s ER.
After more paperwork and another round of telling a nurse and doctor my symptoms, I had a x-ray. Then I was told I needed a CT scan with dye-contrast to show a more clear picture of my lungs. My mouth literally dropped when the doctor gave me the news I had a blood clot. It was scary seeing a nurse come in with a shot of the blood thinner Warfarin. I was only 32 for goodness sake! Who would have thought… certainly not me!
The nurse and doctor went over different ways I may have formed a clot, leading us to finally decide it was probably my recently increased birth control prescription. I needed the dosage increase to reduce the size of a cyst on my left uterine gland. Since the cyst is back now, thank goodness my gynecologist said it was nothing to worry about in terms of cancer or a rupture! I just endure the pain when it comess because it’s better than another blood clot forming.
That night, I was sent home with a prescription for Xeralto – a different blood thinner in a daily pill form. I went back to the ER the next day with a rash from head to toe. Luckily, a strong shot of benadryl got rid of it and doctors determined I’m allergic to contrast dye for a CT scan, which I had the day before. I was still admitted to the hospital, though, because I continued to have severe chest pain, more than what should be expected from a blood clot. I went home two days later with the same pain and no additional help… yeah, I wasn’t too impressed with my physician at the hospital.
For several weeks, I could barely walk to the bathroom without giving out of breath. If not for my mother, sister, and boyfriend, my home would have been a mess. And I’m beyond grateful for their continued help with it and assistance with my very hyperactive five-year-old son. My breathing slowly got better but my pain continued to get worse, both in my chest and upper body, legs and arms. I was in and out of the ER, worried I was having a heart attack or some other type of heart issue. My EKG results continued to be normal, though, so then the merry-go-round of specialists visits began.
First I think it was a pulmonologist, who confirmed I had some sort of mass in my lungs on that first day in the ER but unsure if it was really a blood clot. I could not have cared less at the time because the mass had dissolved and I was still taking blood thinner to make sure it didn’t come back. My concern was that I wasn’t getting better. I kept re-emphasizing this from doctor to doctor. No one could give me answers. By mid-April, I had seen a pulmonologist, cardiologist, neurologist, rheumatologist, and pain specialist. I’d had multiple tests, scans, blood work, and even a DNA swab. The only results were elevated inflammation markers from blood tests but nothing else…NOTHING. And no one could determine why my AHA levels were high, which indicates there is inflammation in the body. It was my primary physician who finally said he thought it may be pleurisy, inflammation of the chest cavity and tissue around the lungs, but he was uncertain of that too.
How frustrating to not know! Here I was out of work, being asked how I was, and couldn’t give a clear explanation as to what was wrong with me. Not knowing what else to tell people, I’d just give them my symptoms and say I was getting by the best I could. Doctors were no help. “Work through the pain” was the advice of one physician’s assistant. I was so ticked off the day she told me that. How do you “work through the pain” when I could barely handle getting ready in the morning? Taking a shower alone would wear me out to the point I’d have to rest before getting dressed.
Finally in mid-April, after three and a half months of severe pain, my pain specialist officially diagnosed me with fibromyalgia. Honestly, I’d never heard of it and had to Google fibromyalgia to get more information, sticking to the .org sites for trustworthy and clear details as to what I was dealing with. FYI, MayoClinic.org is my favorite medical Website. Reading the information was like reading my list of problems every time I talked to a doctor. I had it all…pain in key trigger points of my body, fatigue, trouble sleeping, memory and disorientation issues (called fibro fog), just to name a few.
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” http://www.mayoclinic.org/diseases-conditions/fibromyalgia/home/ovc-20317786
So in average, non-medically-trained people language, my brain overly exaggerates the pain signals my nerves send from muscles in my chest, upper back, arms and legs. It hurts tremendously when I get the sharp pains, especially in my chest and just under my shoulders right where my armpit begins. My favorite part is trying to put lidocaine ointment on my chest to help relieve some of the pain. I mean how does a woman reach the muscles under her breasts with an ointment! Really? How ridiculous! Medicine, relaxing, low stress, mild exercise, heat/cold compresses, and a TENS-unit (a device that sends vibration impulses to your muscles) is the only things that give me any relief so far. I’m still hoping for more help to alleviate my pain.
Most people who suffer from fibromyalgia have flare ups every so often but leave it to me to have chronic fibromyalgia. I suffer all the time, day in and day out, but I also have flare ups that are much worse. These past couple of weeks have been one of the extreme flare ups. I barely want to get out of bed, much less exercise as needed, clean the house, cook, or even bathe.
For those who also suffer from fibromyalgia, I’ll continue to share anything I find that helps or good links to information with new ideas and findings from medical studies. Also, please share with me in the comments. I could use all the help I can get too. Right now, I remain on short-term disability leave from teaching. I want to return so badly but just don’t see how I ever can. And the stress from figuring out how to financially support my son and I only worsens my condition.
What started as a notion I had bronchitis turned into six months of blood thinner and my first attack of fibromyalgia.
I urge you to always take any illness seriously because you never know when it may be something much worse.
Thank you for reading. Please share my blog on your social media to help spread the word. You can’t imagine how appreciative I will be!