You probably know by now that someone with fibromyalgia is very sensitive to touch. Many times the slightest touch or the gentlest hug can cause great pain. I have had people tap me on the arm and it felt like that hit me with a bat. This pain lingers for quite a while before my arm will settle down. This is called Hyperalgesia. I have written before about how this pain feels. But there is more to the pain than this. Fibromyalgia is a sensitivity that extends to ALL the senses.
Fibromyalgia Pain – Making Sense of Other Neurological Issues
1. Fibro and our skin
According to Very Well Health, there are actually 7 different types of pain that one can experience due to fibromyalgia. The first you may be aware of is Hyperalgesia. “Hyper” means excess and “algesia” means pain. This is when the level of pain is turned up. Messages are sent to your brain as saying the pain is much worse than it actually is.
Myofascial Pain is widespread muscle pain. It is “commonly described as a deep and gnawing soreness, stiffness, aching, or throbbing all over the body, including the arms, legs, neck, and shoulders—is a hallmark feature of fibromyalgia. This includes what is called costochondritis which is tenderness in the chest wall. I experience this just from getting an ultrasound breast exam.
Allodynia pain is an itching, burning, tingling, or numbness in the arms. Sometimes I have felt like I have a bad sunburn. Other times, I can’t stand for moving air to touch my skin. I can feel cold on a hot day.
2. Fibro affects our eyes
The way fibro affect my eyes is dryness and sensitivity to light. At times it feels as if someone has stuck a needle in my eye. Over time, it can affect your vision because you are squinting. It is important to see your eye doctor (ophthalmologist, not just an optician) on a regular basis. Don’t neglect your eyes.
3. Loud Noises are Painful to the Fibro Warrior
Noise can cause pain as well. One reason I had to stop working in the children’s department was that the noise level was too high and it hurt my ears. I can’t be in the same room while the vacuum cleaner runs either. Thank goodness, I have a husband who runs the vacuum for me!
Scented perfumes, detergents, and cleaning agents can make someone with FMS feel ill with everything from fatigue to nausea and headaches. Foods smells can also make the fibromyalgia sufferer so sick they don’t want to eat anything, or start eliminating certain foods from their diet, even if they are healthy items.
I can acquire a serious headache when women who love their perfume walk into the room. Some people cannot use anything in their home that has a smell: ie. candles, soap, air fresheners, cleaners. Attending church on Easter can be a horrible experience with all the Easter lilies.
Sometimes, spices are too hot for me. It is strange that it is random. One day I can eat a pepperoni pizza just fine. Then the next day, the pepperoni burns my mouth as if I have eaten a hot pepper. Trust me, I haven’t eaten a hot pepper. 🙂
All the Senses Are Affected
As you can see, Fibromyalgia affects all of the senses. It can be pretty frustrating and many of these issues have no way to help the problem other than avoidance. I hope this helps you understand a bit more about the Pain Warriors Plight. Come back again for more explanations.
Are You Feeling My Pain?
Have More Questions?
Please leave you question in the comments and I will try to answer them.
Question: What medications do you use for fibromyalgia?
RE: Fibro Medications
Thankfully, Savella has been my “savior” in medications. I have been using the full amount allowed of the drug Savella for fibromyalgia for 9 years now. Savella is the only medication created expressly for the pain of fibromyalgia. It works a lot like an anti-depressant, but it is not used for that purpose. It is a relatively new drug and expensive. Most insurance companies are reluctant to fill prescriptions without your doctor’s intervention. They want you to try medications such as Lyrica and Cymbalta first, which I have done with no help.
I have tried them all
From the start of my serious pain issues, I have tried several different drug possibilities. At first, since we weren’t sure what was wrong the doctor tried a prednisone titration pack. But as soon as I started decreasing the steroid the pain returned. We tried Tramadol with little success. Then Cymbalta which did nothing for me. Neurontin was next but really had no effect. I continued on the large dose of prednisone and occasional Tramadol but this wasn’t all that beneficial.
It’s taken all these 9 years but I just recently eased my way completely off of prednisone!
– Mandy Farmer
May 12 is Fibromyalgia Awareness Day
Several of my Pain warrior friends have conglomerated together to write posts on medication we have had success taking and/or other tips that help us manage our pain. Below you will find a wonderful list.
I know all of us react differently, but these are the fibromyalgia treatments I’ve found most beneficial since my diagnosis in 2014:
• Low-dose naltrexone (LDN) – LDN is one of the only pharmaceuticals that has ever improved my chronic pain and other symptoms. Based on small studies, LDN outperforms all three fibromyalgia medications approved by the FDA.• Medical cannabis – I could not sleep without medical cannabis, and it’s been a huge lifesaver as I’ve struggled with chronic daily headaches. Does it eliminate the pain? No, not exactly. It just makes the pain more tolerable.
• Infrared sauna – I’ve never regretted purchasing my infrared sauna. It helps immensely with that all-over achy feeling, and it’s heaven in the winter when it’s so cold that my bones hurt.
• Magnesium – I use magnesium both topically and orally. Topically, it helps to reduce overall achiness, leg/foot cramps, and restless legs. I also take a magnesium glycinate supplement, which improves all of the previously mentioned issues and keeps me regular!
Find something to distract yourself from everything. For me it’s painting, watching my favorite comedians & favorite shows. Music is good for my soul, a walk-in nature does wonders for me. Well, I have a dog, so it’s time to go outside. and more…
“I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing.”
I’ve never been able to stay STILL. I can’t even watch a 30 minute TV sitcom without getting up and moving around. I have to either be crocheting or have something to do with my hands. Otherwise, I’m up at every commercial whether I have something to do or not. My son inherited the same thing from me. He is always going and going. As a baby, my husband had to literally hold him tight in his arms to get him to go sleep at night.
God had to do the same with me.
He had to take me in his arms and hold me tight. I was doing so many things. To name a few …
not only was I a pastor’s wife,
homeschooling my daughter,
Children’s Ministry Director,
leading classes at the home school group,
Office Manager at the church,
and who knows what else.
Until one day in September, I was Suddenly Still
God said “Be STILL” one last time and I could do nothing else but be STILL.
It was a normal Sunday. I had been dealing with Dis-embarquement Syndrome from a cruise earlier in the year; so, that afternoon I decided to lie down and rest before evening services. As I went to lie down, I had a sharp pain in my back, I couldn’t finish lying down, nor could I raise myself to upright. My husband had to help me into the bed. If I moved the least bit, I had excruciating, contracting pains in my back. Long story short, I spent the next month or two laying on my back in the bed-Suddenly Still. It took a year and one half of doctors visits trying to find out what the problem was.
During those days of STILLNESS
God stripped all the things away that were getting my attention instead of Him. The church office, the children’s department, the home school group. Thankfully, my daughter was self-directed enough to keep her schooling on track. She also amazingly picked up the housekeeping and cooking. While I lay there, STILL, God was finally able to begin to speak to me. That’s when I began to actually spend time in the Word. Over the next three years, I read the Bible through in three different versions. God has allowed me to get back on my feet, but not back to doing all the things I wanted to do. I’m not sure that He will because when we discuss it, He asks me …
So this pain is my “thorn in the flesh” to remind me about what is most important. The message I tell people the most now is,
Don’t let this happen to you.
Put God first and everything else will fall into place. (Matt 6:33)
These years have brought me so close to God. I’ve realized how far I was from Him and how much I was doing things in my own strength. And how much I had been missing.
If you have been “SUDDENLY STILL” from your “responsibilities”, I wonder if it is not God calling you to come, get STILL, and fellowship with Him.
Stillness is hard, especially when you are hurting or scared or worried. Whenever I hear this Bible verse I am reminded of working in the strawberry fields.
When I was in college, I worked at a strawberry patch every summer. Now, this was not just a little patch of strawberries in our backyard. This was acres of strawberries. I worked through the season. So I was cleaning fields to keep out weeds and ready them for the public to come and pick strawberries. Now when strawberries are blooming, guess what else might be around. You guessed it, bees.
One day, I was working the fields when suddenly I found myself working in the same place as the bees. And I was surrounded. Why couldn’t this be one of those times when you find yourself frozen and cannot move?
No … My mind was saying “BE STILL… BE STILL and they won’t bother you. Just go about your own business. Keep pulling weeds.” But my body was flailing, my feet were doing some kind of new dance. My arms and hands were waving and swatting the air. And no matter how much I tried to stop, I could not convince my body that I needed to just stop and quit moving. (My brothers had a good laugh imagining this when I relayed the story to them.) Somehow, I finally did find a way to still myselfwithout getting stung.
Here’s the point.
The bees need to be there to pollinate those strawberries. We wouldn’t get those sweet, delicious strawberries without the bees.
It’s that way in life.
Those trials are there to help us grow. You’ve heard it before … “ the testing of your faith produces endurance, etc., etc” But, we don’t like it one little bit. We want the trial to go away, but God needs us to STOP AND LISTEN. He is CALLING to us, but too often, we don’t hear him because we are too busy doing good things and then too busy swatting at the problems.
But He is quietly saying “BE STILL. BE STILL.” Some of us never learn to BE STILL until God forces us to BE STILL.
Coming up next, I’ll share how God made me STILL.
Meanwhile, share in the comments, “What does it take for you to BE STILL?”
Want to know about my journey with pain? Check back HERE for new posts on my story.
I lost supporting other homeschoolers and teaching classes,
No freedom as I could no longer drive myself where I wanted to go,
I lost my social life,
However, I gained a new perspective on life.
I gained an empathy for others who are ill…sicker than myself.
I gained an understanding of the concerns and pressures placed on a caregiver. None by their own choosing (other than the promise given in the wedding vows, or that blood is thicker the water).
and ultimately, my husband lost his job due to my illness. Which meant we lost our home, our income, our self-worth.
We gained a new trust in God as our provider (no relying on our own abilities here.)
The greatest thing I gained in the stillness, was time to really get close to my Creator. I now gave Him time to really speak to me and, oh, how I have grown.
Illness can teach us what is really important in life.
We can get so busy doing stuff.
Stuff that doesn’t matter worth a flip.
Stuff that will only burn up when we stand before God one day.
Why don’t we listen
when we read or hear God’s Word?
He says …
Jesus: If any one of you wants to follow Me, you will have to give yourself up to God’s plan, take up your cross, and do as I do. 35 For any one of you who wants to be rescued will lose your life, but any one of you who loses your life for My sake and for the sake of this good news will be liberated.
36 Really, what profit is there for you to gain the whole world and lose yourself in the process?
37 What can you give in exchange for your life?
38 If you are ashamed of Me and of what I came to teach to this adulterous and sinful generation, then the Son of Man will be ashamed of you when He comes in the glory of His Father along with the holy messengers at the final judgment.
It’s been a while since I shared my journey with fibro and RA pain. A new friend and fellow pain warrior asked if I would do an interview on her blog, so that gave me the chance to update my story.
When did you notice that something was wrong, at what age do you think the first symptoms appeared?
My first symptom was severe chest pains at the age of 11 or 12. Of course, after chest x-rays and such, nothing was found to be a problem, so it was diagnosed as “growing pains”. I had these pains all through high school. In retrospect, the more I learn about fibromyalgia the more I see that I have probably suffered all my life. Fatigue has always been an issue for me.
Normally it takes a few years to get the diagnosis. What was it like for you?
No other research was done until after we returned from a cruise in February 2011 (49 years old). I acquired dis-embarkment syndrome which is when a person never gets their land legs back after leaving the ship. I still have a feeling of bouncing in a boat (10 years later). Months went by as doctors tested me for the problem.
In August 2011,
I had an episode of shortness of breath. No diagnosis was found. Then I awoke one morning with a crick in my neck. I went to a chiropractor who tried to give me an adjustment. My neck would not move at first but when it finally did, it shot pain down my neck and body.
My journey with pain really began one Sunday in September; I laid down to rest but only lay about halfway down when pain shot across my lower back. The slightest movement would cause excruciating, contracting pains across my back. I was confined to my bed for about a month. No medications except large amounts of prednisone were helpful.
After visiting several doctors, I ended up with a blood clot in my left leg because I had been immobile for too long. Visiting these doctors entailed being carried out of my house in a wheelchair by four men. After recovering from the blood clot, my doctors decided to send me to Mayo Clinic. (Happy 50th birthday!) The doctor sent me home and said wait for Mayo Clinic to call.
Mayo Clinic called me within a month just to get my information and give me instructions for setting up an account. They said that it would probably be 6 months to get an appointment. I thought, “No way I can have this kind of pain for six months”, so I asked to go to Emory University. We went to the spine center at Emory but they found nothing wrong. Fortunately, after a month or so, Mayo Clinic called and had an opening.
The first appointment at Mayo was with one doctor. I brought him all my records and shared my entire story. We returned 2 months later for 3 days of testing and seeing several specialists.
I went home with a diagnosis of Central Sensitivity Syndrome with indications of Fibromyalgia, Myofascial Pain Syndrome, and Chronic Pain Syndrome. What a mouthful! That was sometime in March 2012 – a year and one month after our cruise. When I talk with other fibro patients, I feel that I was fortunate. I am thankful that I was so quickly sent on to Mayo Clinic. It is quite an amazing medical center. I wrote a post about Mayo Clinic.
After a few months of medications for the fibromyalgia, I was able to begin to reduce the steroids. At this point, my knees began to swell and have a lot of pain. So I was sent to an orthopedic specialist. He diagnosed a torn meniscus and arthritis.
Knee Surgery. Repaired the meniscus and cleaned out some arthritis. But things were not looking good in my knee. He wanted a second opinion. So we were scheduled to return to Mayo Clinic. Once you are a patient, It doesn’t take as long to get an appointment.
Returned to my rheumatologist. He agreed that it was likely just osteoarthritis. But he decided to schedule all the blood work again. It turned out that I have Rheumatoid Arthritis. I wrote about the difference between osteoarthritis and rheumatoid arthritis here. The RA was caught early. The doctor said that I was fortunate and would probably not have the disfiguring that most have.
I’ve been struggling with chronic pain for nearly 10 years. Finding purpose is key to having a fulfilled life in the midst of pain.
One of the good things about that is connecting with so many wonderful chronic pain warriors. We have such a wonderful support community online.
One of those places is the Diamonds Conference where I met Paula Short. She recognized my blog and knew she had read some of my posts in the past. Now she knew where to find me! So she jumped right over to the blog and signed up for the newsletter. I have asked her to share a bit about her life with chronic pain and how she found new purpose.
1. Share the short story of your chronic pain journey. What is your diagnosis? Share some about the journey to this diagnosis.
Paula: I distinctly remember sitting on my mom’s bed crying because my legs hurt. That was at age 9. I could never go outside and play long because I had to come in and lay down because of the pain in my legs. My parents took me to the doctor and were told it was growing pains, my parents were told then that I had anxiety. Well, the pain never stopped, it stayed with me as I aged. Then in my teen years, my pain was spreading to other areas of my body. I began getting headaches at around age 4 and having chronic diarrhea since childhood. Of course, the doctors did not say it was IBS but just a nervous stomach. I still have belly pain and IBS today, even though I take medication for it.
I spent my 20’s going from doctor to doctor each area of illness required me to see different doctors. Finally, I was diagnosed with migraines, IBS, TMJ, and at the time MS. Fast forward to my 40’s. I was then diagnosed with degenerative disc disease, degenerative joints disease, and chronic pain. Finally, in 2016 MS was ruled out as a misdiagnosis, and then I got the fibromyalgia diagnosis. I also got my diagnosis of Complicated migraines while some people get auras, I get stroke symptoms. I am told it is a rare type of migraine. It was in 2016 that I had to retire, early at the age of 45.
I was devastated to have to leave my beloved Social Work. I felt like I lost my purpose. The constant pain and daily migraines (that cause me cognitive issues) had taken over. In addition to being in pain all the time. I am always in some state of migraine; my baseline pain level is 3 during the days but can rise to an 8. Balance and mobility issues, as well as, the dreaded fatigue and fog have been an issue, causing me to be labeled a fall risk.
So Much Chronic Pain
I don’t remember what it feels like to have no pain. I can’t forget to add in I see a psychiatrist for severe anxiety, depression, and panic attacks. After three years of therapy, I phased out of counseling in August of 2019.
Grieving and then on to acceptance. I continue with medication management now. Everything seems to get worse as I age. I take a lot of medication and prednisone is my friend.
2. Throughout this time, how was your faith walk impacted? Did you lose faith? Get Stronger?
PAULA: While I had grown up in a Christian home and followed Jesus all my life. Looking back, I see that I was a lukewarm Christian for a lot of my adult life. It was during my 30’s that my faith began to grow. It wasn’t until my 40’s that my faith began to develop into a relationship with God. I found and still do that during my worst times it leads me to draw nearer to God. It was during self-isolation and not wanting to go out of my house that I suddenly had an awakening if you will, I had to surrender not only my illnesses but my life to him. I said,
I am a work in progress
3. Was there a specific event that became a turning point in your faith during this journey?
PAULA: No. I really can’t pinpoint a specific event that was a turning point along my way. The best way I can describe it is since it has been a long journey, I continue to be a work in progress. If anything, this journey had led me to have a relationship with Christ. Emphasis on “relationship“.
4. What scripture has become a comfort for you in this journey? Why?
PAULA: “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” 2 Corinthians 12:9 (NIV).
Although Jesus has not removed my physical condition his power is displayed in my weakness. It reminds me to trust and rely on God instead of myself, admitting my weakness affirms God’s strength.
Another Scripture that I rest in is Isaiah 40:31, NIV. It gives me hope and reminds me that his promise of strength will help me rise above life’s distractions and difficulties.
5. How do you find comfort on especially painful days?
PAULA: I remember that God is omnipresent, He is always with me day and night throughout my journey of this thing called life and illness. It brings me great comfort in knowing that. Also, I love listening to Christian music such as K-Love radio. It leads me to sing praises and worship him despite the pain. And thankfully, I am uplifted.
I love to read and prefer reading over TV, and I get creative by Bible faith bullet journaling.
I also find great comfort in my friend that Jesus blessed me with to journey with me, my ESA dog’s a little beagle named Little.
6. What are some things that your family and friends do that bring comfort in your pain?
PAULA: Well, that depends. My family and friends have not read about my chronic illness to educate themselves on how my fibromyalgia can affect my body and cognition. When I try to tell them how it affects me, sometimes, they listen and sometimes they dismiss or marginalize me.
They do, however, know how my complicated migraines affect me and are receptive towards me through those. Someone always goes with me to my neurologist appointments, so they hear what the doctor has to say. They are accommodating and compassionate when my migraines escalate.
7. Are you involved in any ministries or community service to reach out to others with chronic pain? Share about this.
PAULA: First, I need to tell you how God gave me my purpose back. If you recall above, I said I felt like I lost my purpose when I had to retire early from my beloved Social Work. I had been thinking of blogging for a long time, my heart was, and is convicted, in sharing more Jesus.
I kept feeling a tugging. Like God was calling me for something. But at the time I couldn’t recognize for what. Then when I did, I resisted saying “But God I’m not a writer.” Well, he had plans for me, and here I am writing hence Simply Chasing Jesus was born in November of 2019.
My new purpose was sharing him. Then I began to feel that tug again, still to blog. This time Simply Coffee and Jesus were born in September of 2020. This is where I began to hone in and write more specifically on chronic illness among other new topics for me. I never considered my blogs my ministry, but pausing and reflecting on it, it really is my ministry to help others and share Jesus’ good news.
8. Offer some words of encouragement to those who may be searching for purpose in their own chronic pain journey.
Dear friends, living with any chronic illness is rough. I know there are days when you are wondering how you’re going to make it through. I know there are days when you simply can’t function. I get it. Whether you are newly diagnosed with a chronic illness or have been a long-time warrior, educate yourself.
Try your best to educate friends and family. Some may not understand nor want to understand and that’s okay too. There are many great websites out there about living with chronic pain and illnesses. It was just recently that I was able to connect with other Christian bloggers who have and write about chronic pain and illnesses. So, you see, it may have taken me a while to find fellowship and community with others who understand but I finally did.
Friend, there are others out there, we are out there for you. We support you; we care. You are not your chronic illness you are not your chronic pain. God chose you and called you by name. Keep digging deep into God’s word. All Scripture is God-breathed from beginning to end. The answers, comfort, and hope are there in Him. The Psalms are filled with every emotion and lament you may have. God breathed hope from beginning to end. Dearest friends pray to him with honest abandon.
God’s got this!
God’s got you.
Thank you, Paula for this encouraging interview. Though I don’t have as many diagnosis, I could relate to so much of your journey. Especially the “I can’t write”. But God has a great sense of humor doesn’t he?
My first mammogram was one of the worst days of my life. To make matters worse, it was my anniversary. It was so traumatic for me that I spent the whole next year dreading the next mammogram. I did everything I could do to skip having mammograms. This is NOT a good idea. I didn’t know it at the time but I have fibromyalgia – a sensitivity syndrome that makes everything more painful than it should be. But I have learned that I have options, so now I share these with you.
Mammogram: An X-ray of the breast that is taken with a device that compresses and flattens the breast. A mammogram can help a health professional decide whether a lump in the breast is a gland, a harmless cyst, or a tumor. A mammogram can cause pressure, discomfort, and some soreness that lasts for a little while after the procedure.
That’s the medical description. Here’s my description…. they place your breast between two plates. The plates come together and squeeze your breast to take a picture of the tissue. I’m not sure this was the cause, but I am short and I think that the machine was not only squeezing my breast but also pulling it upward. It doesn’t take that long but, for me, it was way too long.
Genius™ 3D Mammography
A 3D mammogram (breast tomosynthesis) is an imaging test that combines multiple breast X-rays to create a three-dimensional picture of the breast.
A 3D mammogram is used to look for breast cancer in people who have no signs or symptoms. It can also be used to investigate the cause of breast problems, such as a breast mass, pain, and nipple discharge.
When used for breast cancer screening, 3D mammogram machines create 3D images and standard 2D mammogram images. Studies show that combining 3D mammograms with standard mammograms reduces the need for additional imaging and slightly increases the number of cancers detected during screening. But more study is needed to understand whether 3D mammograms may reduce the risk of dying of breast cancer more than a standard mammogram alone.
I have heard of these but didn’t realize that it may be a more comfortable way to get your imaging completed. Looks like something to look into. It takes a bit longer to get the image, so this would be something to consider for those of use with pain issues. How long can you deal with the pain?
Thermography is a test that uses an infrared camera to detect heat patterns and blood flow in body tissues.
Digital infrared thermal imaging (DITI) is the type of thermography that’s used to diagnose breast cancer. DITI reveals temperature differences on the surface of the breasts to diagnose breast cancer.
The idea behind this test is that, as cancer cells multiply, they need more oxygen-rich blood to grow. When blood flow to the tumor increases, the temperature around it rises.
One advantage is that thermography doesn’t give off radiation like mammography, which uses low-dose X-rays to take pictures from inside the breasts. However, thermography isn’t as effective Trusted Source as mammography at detecting breast cancer.
Not considered a good way to detect cancer. False-positive results can sometimes result because other issues could be causing the inflammation. Suggested only for women under 50 who have dense tissue. This is obviously a non-evasive procedure unlike the mammogram but the mammogram is a much better detector. You will find it difficult to get insurance to cover this procedure and probably have to drive a few hours to find a place that has the thermograph.
Since it shows changes in your breast. I’ve thought it would be good to start early in your twenties to have a base picture to look at. But again, read more at Healthline for more information.
Ultrasound uses high-frequency sound waves rather than radiation to produce pictures of the breast.
For the procedure, some gel will be placed on your skin. Then a small transducer will be guided over your breast. The pictures will appear on a screen.
This is a painless procedure that typically doesn’t cause side effects.
Ultrasound of the breast may be used after an abnormal mammogram or in women with dense breast tissue. It’s not usually used in routine breast cancer screening for women at average risk.
I have opted for this one the past two years. No pain to speak of. Since Fibro is an issue where pain arises from pressure, one can feel some tenderness in some parts of the breast. But this option is much better for my situation. Your insurance will probably approve the procedure but you may have a deductible or co-pay.
Check into Herscan that travels around some states doing this procedure. They have a fee which is about what your co-pay for an ultrasound would be.
You’re lying face down on a massage table, your breast encased in a water bath through an opening in the table. Tiny ports from a surrounding ring fire ultrasound waves. There are no X-rays and no pain. There is no holding still for 20 minutes or more.
Water Mammogram is a relatively new option. My PCP told me about it. I haven’t tried it yet. The above link is an article about it. It seems to be just as helpful as the traditional mammogram. I may try it next time.
Other Options for Mammogram
As I researched these options today, I saw that Mayo Clinic has an article on Molecular Breast imaging. I’ve not heard about this one before. It seems to use dye and imaging. See more info at Mayo Clinic article.
I met Carrie through a mutual fibro group. When we chatted, she shared that she lives in Taiwan away from her family in Canada. My family lives all over the States but I can’t imagine being a continent away from my family. Continue below for Carrie’s story about her own journey of coping with pain.
Hi Mandy and Michele. Thanks so much for taking the time to feature my chronic pain story. I’m a Canadian expat in Taiwan. I moved to Asia in 2003 and lived in China for three years before moving to Taiwan in 2006. I’ve had chronic pain since I was a teenager.
1. Share the short story of your chronic pain journey. What is your diagnosis? Share some about the journey to this diagnosis.
Like most of us, I thought that the pain I was experiencing after working out or going for a run as normal. In my 20s, my pain started becoming much more noticeable and I attributed it to sports injuries such as shoulder and knee dislocations. Little did I know that those dislocations were a sign of something more sinister at play!
When I brought my pain up with my docs and rehab specialists, especially for my knee injury, they said it was normal. After my recovery, I left for China to teach English. I fell in love with Asia and decided to stay, but during my time there, the pain I was experiencing in my back was getting worse by the day. Some days I’d wake up and couldn’t lift my arm or turn my head.
Most days were miserable, but I put a smile on my face and kept enjoying life in a new country. I am a great pretender. Most people would never know I’m in pain when they look at me.
In 2008, shortly before my wedding, I woke up and couldn’t put any weight on my left foot. We wondered if I’d actually be able to walk down the aisle and again, we chalked it up to sports because I was very active back then.
Two months after my wedding, I woke up again in horrible pain in my legs and back. Both my knees had swelled up overnight, and of course, I thought that I had done something at the gym, so I went out for a walk and was soon calling my husband asking him to come and get me.
In a Wheelchair
The next day, he took me to the ER, and by then, I was in a wheelchair for the first time in my life. This was the first time I remember the pain being so bad, it was intractable. Nothing helped. My knees were huge. The doctors had no idea why there was pain everywhere without a specific reason.
They aspirated my knees and then said they suspected I had either RA or Ankylosing Spondylitis. I tested negative for RF factor, so they went with Ankylosing Spondylitis and sent me to another hospital where they had AS specialists. I received my AS diagnosis, which is a type of inflammatory and systemic spinal arthritis, in February 2009. This made sense because the pain was hitting everywhere in my body, but my spine was on fire from top to bottom.
No One Prepared me For What Was to Come
Finally, I had an answer, but no one prepared me for what was coming.
I was treated at the same hospital for four years successfully. In 2012, I entered remission and I thought, that’s it. Now I can go back to my life!
But soon enough, the swelling returned and by July 2014, my health was a mess, the pain was back and it was much worse, AND my rheumy retired. I really liked him. He was the best rheumy I’ve ever had.
That’s where things took a turn for the worse and I entered the system as a foreign patient in a Chinese health care system being bounced around from doctor to doctor at 37 years of age because ‘no one thought I should be that sick or in that much pain’.
In late 2014, I received a Fibromyalgia diagnosis and an MECFS diagnosis and they started treating all three. And of course, once you have one autoimmune disease, they just keep piling on. Soon enough, I was having GI problems, eye problems, heart problems… There was no part of my body left unaffected.
I lost everything – my career in music, my job, my ability to move or go to the gym, friends, family; it was utterly devastating. And on top of this, I had this never-ending intractable pain that has severely impacted my mental health with no options here for assistance in coping with what I am going through.
At 45 years of age, I honestly can’t remember a day now without pain. I can’t even imagine what a day with no pain feels like anymore.
2. Throughout this time, how were you impacted emotionally?
Like most chronic pain patients, at some point, we learn that there are positives to living with pain. Those positives help to offset the negatives that we go through by living in pain.
I’ve found that my personality has changed. I’m still friendly but much more reserved. Because of the pain, I’m scared to let anyone touch me because it hurts. I’m not the social butterfly I was before I got sick. I’ve had to learn what my limitations are and work hard at acceptance. I’m not as impatient. I’m better at waiting things out. (Because we have to wait for acute flares to end at some point.) I’m definitely more compassionate, and resilience – we all build resilience when we’re coping with issues that impact our lives so severely.
Coping with Pain ~ Indoors
I’m mostly housebound, but I’ve found wonderful ways to keep myself occupied at home. If you had told me 20 years ago that I wouldn’t be able to leave my house much, I would’ve laughed and said impossible.
Now when you enter my home, you can see that I’m a very active indoor gardener and there are art projects and books everywhere. One of the best pieces of advice I can give to patients who are newly diagnosed is to get those rainy day projects ready and keep adding to them. Having projects to work on helps immensely with coping. Also, build your support network because you will need it. Make sure to reach out to other patients. It’s other patients who have kept me updated or informed or who have sat up with me late at night when I can’t sleep because of pain.
3. How do you find comfort on especially painful days?
On days where I am able to move, but I can’t leave my house, I enjoy indoor gardening. I also practice ikebana, the art of Japanese floral arranging, which is a really zen activity that isn’t too demanding. If it’s not too bad, like today, I’ll sit up and write.
I love art and do all sorts of art projects. Art has had a huge and massively positive impact on my life. I can illustrate how I’m feeling through art, and it’s also a great coping technique to get your mind off the pain.
On days that I’m stuck in bed, I rely on the usual: Netflix, art, reading, music, and playing with my cats.
A comforting soak in the bath
Hot magnesium baths help a lot to ease sore achy muscles, so I try to soak three times a week. Any patient who contacts me for info, the first thing I mention is to get in the water and soak. Do it as much as you can. At first, I felt lazy and didn’t want to spend 30 minutes sitting in the bath, but eventually, it turned into something I genuinely enjoy doing and it’s excellent for my health. Hot baths also help me relax and sleep better. My home spa cocktail is:
1 cup of Epsom salts,
¼ cup of magnesium chloride flakes,
a squirt of sweet almond oil, and
a few drops of my favorite essential oils, like jasmine, lavender, or ylang-ylang.
4. What are some things that your family and friends do that bring comfort in your pain?
I live abroad while my family is in Canada, and I got sick over here, so my family isn’t here to help. My mom calls a lot. I don’t know what I’d do without her. I have found I withdraw during super painful episodes, and she’s always there are the end of it so we can chat and catch up. It must be terrible having a child so sick and so far away. I feel so guilty being over here, but honestly, this is where I need to be specifically for healthcare and because my business is here.
As for my friends here in Taiwan, they have all seen me go from a vibrant, active, contributing member of the expat community to someone who is sick all the time and very rarely leaves home. I lost a lot of friends who couldn’t cope with having a friend that never gets better, but the friends that have stayed in my life are so supportive. I am endlessly grateful to these people that try so hard to understand my life.
They record silly videos for me or they’ll call from certain events so I can see what’s going on. Some of them drop by for a visit if I’m up to it. I tend to be really private at home though. I don’t usually encourage visitors unless I haven’t seen anyone for months. Sitting up with people in my home is just as exhausting as it is outside my home. I feel pressure to smile and pretend it’s not that bad because I don’t want them to feel uncomfortable.
My online friends who are also sick – the support I receive from them is never-ending and that is such a blessing in my life. I’ve had pen friends all my life, but social media makes it much easier to stay in touch and share. With friends around the world, someone is always up and willing to chat if I need them. I’m also in a few support groups that I admin where we ensure that someone in the group is always online to help others in need.
Sometimes all we need is someone to commiserate with or to hear from someone who understands exactly what you’re going through.
5. Are you involved in any ministries or community service to reach out to others with chronic pain? Share about this.
I’ve been involved in community service since my 20s in every country I’ve lived in. I’ve recently left the Canadian Chamber of Commerce in Taiwan because I’m too sick now to attend events in person, but I participate online. I’m also part of an active community of approximately 3,000 women in Taipei that I’ve been a part of for the past five years. It’s a great group of girls!
Finally, I’m very active in health advocacy and online awareness. I’m an admin for a massive group of women with fibro and AS. I’ve done that for five years and have made strong friendships within the group. My Several Worlds has been listed as a Best Blog in Fibromyalgia with Healthline for the past three years, and I’ve been recognized as a finalist with WEGO Health in 2020 for their Lifetime Achievement Award. I’m thrilled because I pour a lot of energy (and heartbreak) into my website.
I’ve been writing about this journey since 2009 at My Several Worlds. Feel free to stop by and have a read through the 800+ articles I’ve written for my readers.
My goal in Taiwan is to create a safe space for people in pain where they can meet and talk about their pain. Taiwan does not offer much in the way of support for patients in pain, or the mental health issues that come with coping from daily trauma.
6. Offer some words of encouragement to those who may be searching for comfort in their own chronic pain journey.
There is always someone out there who understands and gets it.
You are never alone.
Get involved with online support groups.
Educate yourself and read as much as possible to better understand how you can live with and cope with your pain.
Talk about your pain.
A story about chronic pain is best told from a patient’s perspective. I’m always here to listen and support as needed.
There’s is nothing more frustrating to me than fibro fog. My mind just won’t think straight and it seems to just come on for no reason at all. I start switching up my homonyms and forgetting the most common words. My friend, Nan Jones wrote a letter about this for me to share with you today.
I met Nan when I was doing a series for those in the ministry. Nan offered to write a guest post about discovering the Presence of God in their darkest hour at that time, but in getting to know here I found we had more in common than ministry. She also suffers from fibromyalgia and other chronic issues. Nan’s words are always so beautiful and I really love it when she writes a prayer. She wrote a wonderful book, The Perils of a Pastor’s Wife. And boy, has she had them. If you have ever been hurt by the church, get your hands on this book.
Presently, on her blog, she is featuring women who have been through the fire and survived. Some very inspiring stories. She even interviewed me! Today, on my blog, she writes about the challenges of brain fog, fatigue, and The Crash. Continue reading and learn more.
Dear family and friends,
You know how we’ll be talking and out of the blue I say, “I’m starting to crash” and my speech begins to slow, becoming less fluid, creative, and sometimes even less cohesive? I literally can’t think straight. It’s a time when fatigue overwhelms me and my brain physically feels like mush as fibro fog takes over.
I detest those times. I feel totally helpless to the onslaught of fibro fatigue and its selfish tentacles that disable me and the work of my hands and heart. I’m embarrassed by the lack of mental clarity. And I feel frustrated that I must stop what I’m doing and sleep—sometimes for fifteen or sixteen hours.
During these times I need for you to love me and remind me that it will passand I will be able to return to normal activities. I need to be reminded that I am not defined by this disability and that by God’s grace and in His strength, I can do all things He asks of me.
Thank you for believing in me when I can’t believe in myself. This disease heightens my insecurities, especially as a speaker. It causes me to question if I should continue or not. But then God intervenes and affirms me and reminds me when I am weak, He is strong. For that I am grateful.
I am grateful for you too.
Thank you for being my cheerleaders, my prayer warriors, and my reminders of all things good.
Sweet blessings to you,
The incoherence and crash scare me the most about beginning my own speaking career. You are an encouragement to us just seeing you continue on the journey!
Don’t miss any of the “letters” we are writing. Check out previous letters and subscribe to this series on the main “Letters to Friends” page. If you know someone with fibromyalgia (and you probably do), join my Facebook page Fibromyalgia, Is it For Real?