Healthy but hurting: My life with fibromyalgia
Hi, I’m Leah, and my life is kind of crazy. Seriously though, the running joke in my life is that I’m an old lady who’s constantly falling apart. You name an ache or pain, and I probably experience it.
Let me back up. I’ve dealt with chronic pain for quite a while now. I’ve had severe migraines since high school, and perhaps even middle school, as well as other unexplained pain that I always brushed off as normal.
In December 2019, I hit my lowest point. I was exhausted, depressed and in the most physical pain I had ever been in. I was tired of hurting all the time and not having an explanation for it.
Doctors would run tests just for them to come back normal. They would tell me I was healthy, but I didn’t feel healthy. It was in January 2020 that I finally decided to commit to figuring out what was wrong with me. In February 2020, I was diagnosed with fibromyalgia.
According to Mayo Clinic, “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 and spinal cord process painful and nonpainful signals.”
The process of how I was diagnosed is a topic I will save for another week of this column, since it is different compared to other illnesses.
Symptoms I experience include migraines, neck pain, back pain, nerve pain, sciatic pain, fatigue, numbness and tingling, joint pain, and achiness. That isn’t an exhaustive list, but those symptoms seem to be the ones that I experience the most.
Every day I have pain. In fact, within the last couple of years, I can only remember one truly “pain free” day. It was a weirdly normal day, and by the end of it, I had come to the realization that my body didn’t hurt for once. However, that glorious day was short-lived because the next day I was right back to my normal, achy self.
That isn’t to say that I can’t have good days. There are days where I notice that I am in less pain than usual and I am grateful for those, but there are also really bad days where the only thing I can do is lie in bed, hoping for the pain to go away.
I’ve tried just about every pain management tool out there. Physical therapy? I’ve done it multiple times. The chiropractor? I go about once a month. Ibuprofen and Tylenol? I’ve probably taken an unhealthy amount for my age and it usually has no effect. The list goes on and on. From pain patches to CBD to prescription medication, I’ve tried it all. At my lowest point in December 2019, I even bought a $400 massage gun. That’s how desperate I was to feel better.
In April 2020, I went to Rochester, Minnesota to be seen by doctors at Mayo Clinic due to concern that I had a tumor. I came back a week later with assurance that I did not have a tumor and $13,328 in medical bills — and that’s with good insurance.
The point of this weekly column isn’t to make you feel bad for me. My hope is that sharing my experiences will help others in a similar position and remove the stigma surrounding invisible and chronic illnesses.
It’s been about a year and half now that I have been actively battling fibromyalgia. Each week I will focus on a specific part of my experience. Topics I will cover will include prescription medication and the side effects it comes with, health insurance and costs, pain management, physical therapy, CBD, working with a nutritionist and more.
If I can give one piece advice, I would tell you that chronic pain is NOT normal. I told myself that the pain I was experiencing was normal for years and looking back, I wished I would have pursued a diagnosis sooner. If you experience chronic pain, please do not brush it off like I did.
I hope you will follow along with this weekly column as I share my experiences and take you on my health journey.
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Lisa Larson • Oct 5, 2021 at 4:52 pm
I am a student at Washburn and I am 30 and was diagnosed with Fibromyalgia at age 28. I have almost the exact same symptoms. It is so hard being told by people that you are “too young” to have these kinds of pain issues. When the elevator is out of service I always have to take extra pain meds for walking up the four flights of stairs to my class, and I know I will be paying for it for the rest of the day. I would not wish this on anyone but I was happy to see that I am not alone. I haven’t really met anyone with fibro around this age range so it has been very isolating and it is hard for me to make friends. Thank you for raising awareness of fibro by writing about it!
Leah Jamison • Oct 5, 2021 at 8:37 pm
Thank you for taking the time to read! It is always encouraging to find other students who are in the same boat that I am in.
Charlotte dominguez • Sep 11, 2021 at 5:19 pm
I have been diagnosed for 40 years, I’m currently 80. 40 years ago, you did not hear much about fibromyalgia. If you complained of pain in various parts of the body, you were criticized as a hypochondriac. I kept seeing several doctors. Then the last doctor I saw, suggested I see another doctor, who knew about fibromyalgia. I had never heard of it, but I was desperate. Another round of expensive tests. Mostly blood. Some x-rays. Nothing was wrong, so he gave me a brochure and copies of information on fibromyalgia. Put me on a diet, and gave me prescription for magnesium tabs. My migraines diminished.
I was able to retire. Tried several other meds that did not agree with me.
I mostly live one-day-at a time.
A couple of persons I was aquatinted with committed suicide. One got cancer and refused chemo. So she got pain management and died
I am a Christian and turn my problems over to my God. But If he sees fit for my time, I am ready. Don’t know how long. May God bless everyone with fibromyalgia.
Leah Jamison • Sep 13, 2021 at 10:17 am
Thank you for sharing!
Janis Hayes • Sep 11, 2021 at 11:15 am
Thank you for sharing your story, I too have fibromyalgia along with other diseases including sleep apnea and COPD. I also have RA osteoporosis, pseuriatic arthritis, chronic migraines, and recently diagnosed with neuropathy. I feel your pain. I am 80 years old. Just before Easter I had a bad fall which I should have died from but praise God I’m still here. I’ve had to learn how too walk again. I’ve had to stop driving, give up my home as my doctors said I couldn’t live alone anymore. I have a niece that gave me a room in her house for me to live. She cooks three meals a day does my wash and just loves on me. I’m truly blessed. They have a pool and they turn heater on for me when I can get in. My nephew is also my preacher. I watch church when I’m not able to go which is most of the time. My niece takes me to drs. Appt.
I would love to follow you column. How do I do that.
Leah Jamison • Sep 11, 2021 at 12:36 pm
Thank you for sharing! Each new installment will come out on Thursdays at 1 p.m. so you can either check back on the website or subscribe to our email newsletter which will also have my column featured.
https://washburnreview.org/newsletter/
Angie Richardson • Sep 11, 2021 at 1:05 am
Thanks for sharing your story… I too have fibromyalgia… I am a recovering addict clean for 2 years so I don’t and won’t take anything for pain that is narcotic.. I wish there was something out there that helped people like me… I’m 53 and still quite active but I’m in alot of pain as I have other issues as well … The fibro is the one I need help with… They need to find meds that help nerve pain that aren’t narcotic !!!
Leah Jamison • Sep 11, 2021 at 12:37 pm
Thank you for sharing!
Virginia Hooker • Sep 9, 2021 at 9:11 pm
i am diagnosed fibto too talk about pain is nolie. Its awful i wish they could find something to help with pain
Leah Jamison • Sep 9, 2021 at 10:41 pm
Thank you for sharing!
Dianne Walters • Sep 9, 2021 at 8:53 pm
I also have fibromyalgia also degenterive disk disease and other illnesses I experienced 10-15 migraine days a month that started when I was a teen I am now 56 and I feel your pain I wouldn’t wish this on anyone. I have to take medicine to sleep I can’t sit for for a long time can’t stand for a long time.just the touch to the back of my arms or things like that just about brings me to my knees.bless your heart and hang in there.
Leah Jamison • Sep 9, 2021 at 10:41 pm
Thank you for sharing!
Kennedy • Sep 9, 2021 at 8:41 pm
This was such a great read, and it is so important to spread awareness about invisible illnesses! Really glad this was written!
Leah Jamison • Sep 9, 2021 at 10:39 pm
Thank you!
Debbie Blackburn • Sep 9, 2021 at 7:58 pm
Honey, I feel your pain. I was finally diagnosed with rheumatoid arthritis at the age of 27 after the birth of my 4th child. I know I had it in high school. I am 66. I was diagnosed with fibromyalgia about 23 years ago. I can’t remember a good day. I’m sorry you have to live with such debilitating pain. I have at least found some medications that help ease my pain. However, because of my RA I had to have back surgery, I am needing total knee replacement (if/when covid lets up); and I have interstitial lung disease thanks to whatever. Still working on exactly what is wrong with my lungs. I get one full night of sleep every few months. I pray you find something that works for you and makes you feel better. Even at my lowest point when I could barely walk I had to keep going for my kids. Water therapy is great. Hot tubs a must.
Leah Jamison • Sep 9, 2021 at 10:39 pm
Thank you for sharing!
Mary • Sep 9, 2021 at 7:45 pm
I was diagnosed in 2015.. it was rough, and still is. How do I follow the Story
Leah Jamison • Sep 9, 2021 at 10:37 pm
You can subscribe to our newsletter which will the new part each week!
https://washburnreview.org/newsletter/
Ann • Sep 9, 2021 at 7:19 pm
I’ve had fibro since I was 16 – I am now 73. This year I discovered Savella (Rx) and my life has turned around. I you haven’t tried it, I urge you to do so. Good luck.
Leah Jamison • Sep 9, 2021 at 10:38 pm
I will look into it! Thank you!
Sue • Sep 9, 2021 at 6:07 pm
Thank you for sharing.I have had fibromyalgia since I was 38 and am now 68. It’s nice to share.
Leah Jamison • Sep 9, 2021 at 10:38 pm
Thank you for sharing!
Janet E Jones • Sep 9, 2021 at 5:15 pm
I was first diagnosed with fibromyalgia in 1996. Very early in the game for this. To this day, no one really understands my daily pain issues. Very few good days. Some very brutal days. I am 67 years old. I finally had to retire because I was no longer allowed to take tramadol for my pain, which took the edge off of my pain so I could work. In 2014 is when the government classified tramadol as a narcotic . Ending my legal use of it at work. I made it to 2018 and could no longer keep going. It was time to retire. I feel your pain, I really do.
Leah Jamison • Sep 9, 2021 at 10:38 pm
Thank you for sharing your story!