This series is written in letter form explaining different aspects of Fibromyalgia. It begins with a question others might ask and then answers the question as best as we can. Letters are written by many guest writers and Mandy as well.
Unimaginable to me, but there are people who can’t relate to dealing with pain. There are folks out there that have never had as much as a headache in their life. This is unimaginable to me.
I’m NOT one of them.
I have dealt with pain from a very early age. In the 5th grade, I started having chest pains, severe pains, like having a heart attack pains. But by the time I got to a doctor or the ER, the pain was gone or they couldn’t find the source of it. They said it was “growing pains“. Funny, I never got taller than 5’2”. Sure had a lot of pain to end up so short.
When we receive severe diagnoses, it can shake us to the depths of our souls. And many times, we don’t hear anything the doctor says after that. The last thing you need to do is sit down and give up. Let’s review a few things our doctors may or may not have expressed to you at that initial appointment. These are some things I neglected to do and have learned the hard way about it.
Welcome to Letters to Friends where fibro warriors explain the pain. If you have other questions, we may have answered them here or you can comment below with your questions and we’ll answer!
Fibromyalgia is not a death sentence.
Fibro is not a terminal disease. You can live a full life and have fibromyalgia. Your life may not be the same as before and pain management will be necessary to have a portion of your old self.
Reminder: I just want to say that I am a patient, not a doctor. What I am sharing comes largely from what my doctors have taught me and what I have discovered in my own research.
I am sharing to hopefully help you be informed enough to support friends with this syndrome or possibly acquire informed questions for your doctor. Please talk with your doctor or visit the Mayo Clinic website for official information, diagnosis, and treatment.
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
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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?
–Mandy
Have More Questions?
Please leave you question in the comments and I will try to answer them.
You might expect that once you get your diagnosis, you can breathe again. But many times, this is when the fight really begins. This is when you start seeing the specialists, doing the therapy and adjusting the medications.
Medicine is a great thing. Think of all the discoveries that have been made which have saved so many lives. But there is also a price to pay. And I’m not talking about the cost of the medication, which in itself can be a challenge. I’ve often thought when I see commercials for medications and you hear all the side effects, that maybe, you are just trading one problem for another.
image from Pixabay
I had such a regiment of medications, at times, it was hard to keep it all straight and not miss a dosage. I found an app on my phone (Med Helper) that would remind me throughout the day to take medications. Everyone around me knew my ringtone for medications!
Steroids are excellent for reducing swelling and pain; they were “wonderful” for me. I could walk around and do all kinds of things but I worried about what it was covering up. What was the real problem and was I damaging my body more by taking the steroids. Not to mention the rapid weight gain. I had just recently lost weight to my lowest weight since before pregnancy.; but now, I am back to my highest weight ever. Also, there are more severe effects on your organs if used for a long time.
By the time, I was diagnosed, I had already been on high dosages of prednisone for 6 months. I was placed on the right drug for the fibromyalgia pain and we began trying to reduce the steroids. But it would take a long time as we had to do this very slowly. The slightest reduction of steroids would cause my pain to return with a vengeance. [It took me nearly 10 years to get completely off the steroids.]
Even with Medication… There is Still Pain
Now I want you to understand that these medications only take the edge off of the pain. They bring the patient to a place where one can function .. at least a bit. When I visit the doctor or the therapist, they ask what your level of pain is on a scale of 1 to 10. Mine averages out at around 5 or 6. When the weather is bad, it might be 8 or 9.
Laughter Helps
I have learned there is a mental attitude you need to keep the pain at bay. It’s a big job, but having a positive attitude does make a big difference in how you can handle it all. Of course, there are days that are just plain bad, but if I work at it most days can be bearable.
A merry heart does good, like medicine, but a broken spirit dries the bones.
Proverbs 17:22
The best medicine for that is laughter. So I try to find ways to keep laughter around me. Here are a few ideas …
Share a joke or something funny on Facebook every day.
Watch funny sitcoms. I like the old re-runs that are much cleaner.
Watch comedy movies.
Christian Comedian DVD’s [Tim Hawkins, Mark Lowry, Ken Davis, Etc]
Reminisce about the good old days.
Invite your funny friends over for a visit.
The hardest thing to do is to talk positively. Don’t tell everyone all about your aches and pains. Of course, DO tell your health care people, but try to keep a positive attitude around your friends. It helps you and honestly, your friends don’t really want to hear about it.
What Medicine of Laughter do You Use?
–Mandy
Learn more about Mandy’s Journey with Chronic Pain.
When we are hit with a trial, our first response is to run to a friend or someone’s shoulder to cry on. We may experience loneliness; friends don’t come to our aid. For me, those shoulders (my parents, siblings, life friends) were many miles away… literally in different states. I wanted one of them to be near me, but there was no chance of that. They had their own lives, jobs, families to take care of. I know they wanted to be near me, but it was not feasible.
But would they have been able to give me true comfort?
What I needed was to run to God.
During those first few months, I spent a lot of time really getting to know God in a real way. There was nowhere else to go. And He was so attentive to my needs. He showed me that He knows what pain is all about. He knows my pain, physically and emotionally. I learned that it doesn’t really matter what the trial is….
“Jesus has been there done that.”
Jesus has felt physical pain. He has been rejected. He has been ignored. He’s been broke. He’s had no place to live. You name it, He’s been there. And through that, He became my closest friend. He was the only one that could truly understand what I was going through.
My Immediate Family Are Rare Jewels
Yes, I had my husband and my children who were there with me 24/7. They were there serving me. Wow! Did they ever serve me.
Every morning, my husband gingerly helped me to the bathroom and helped me with all those personal hygiene items. (We’ll talk about the loss of dignity later.) Then took me back and propped me up in the bed so that I could read while he and my daughter prepared my breakfast. Michael moved us down to the first floor of our home to our guest room because I couldn’t go up the stairs. He served me selflessly for months until I was able to do some of these things myself. He did all this while continuing to preach 3 times a week and even took on some of the things I did for the church. Tears come to my eyes as I type this that he would care for me this way.
My daughter who was a home school student gave up many things during her entire high school years so that she could cook, clean, and do the laundry for our family while continuing her schooling. As I was able to get out, she became my chauffeur. While she and I grew to have a wonderful friendship, she gave up all the normalcies of teenage life.
No one can REALLY understand the pain
But with all that, they were at a loss because they couldn’t feel my pain. They didn’t know how to help. They didn’t know what to do for me to ease my pain. Their hearts ached because there was nothing they could do. When they did try to help, many times it was painful. But Jesus knew my pain.
Jesus became the one I ran to in trouble. Those months and years developed a routine to finding Him first each day. Now I still start my day with Him and I take Him with me throughout my day as my shield. Sort of a portable refuge, if you will.
Learning to Establish a Relationship with God
What I learned was I need to establish a relationship with God, the Friend, the Healer; the Protector; so that, the first place I want to run was to Him. Building a relationship is a two-way street. I talk to Him; He talks to me. This is called prayer and meditation with Him.
free from Pixabay
God is My Refuge
Finding a refuge entails, getting down behind the protector.
get down on your knees to hide.
You get quiet so that the enemy cannot find you.
You listen for your ally.
This is called prayer.
Through this ordeal in my life, I have found him to be a refuge … a place to run to … but also now as I return to a new kind of normal; He is my shield. And because He is my shield, I don’t have to run to a refuge. He, The Shield, is my Refuge.
Fix our eyes on Jesus the author and finisher of our faith.
– Hebrews 12:2
Peter’s Confidence
Peter was sailing and in the middle of this storm he sees Jesus out on the water. He gets excited, The Lord of Life is coming! And he jumps out of the boat and onto the water and starts running toward The Truth. Then, his run slows and stops. His eyes lose sight of The Way and he sees the turmoil of dark storms behind Jesus. He looks to his sides and the waves are giants at war around him. As he looks back to the boat. He begins to sink.
I can’t blame Peter for this. I do the same so many times. But I have been made alive by the grace of God. I have in the past 11 years been to the ER more than 30 times, have had 5 surgeries, hospitalized 9 times, lost jobs, had several cars, I have migraines, neuralgia in my ribs as well as my leg, have wires with a battery in my ribs to help me breathe, and have lost a baby due to a miscarriage 8 years ago. It is hard when life is so unpredictable and we just do not know what is going to happen next in the middle of all that is happening.
Hearing Loss
Recently, my hearing loss was noted by my doctor and the specialist, the ENT. Last month I found that my hearing has drastically dropped in my right ear alone. I needed a hearing aid. Like, oh great, another thing has broken in this body. Just as I was finding my resolve in Christ, who alone keeps this mortal instrument held together by his love and grace for some reason, I get a call from the ENT.
‘Jon, I am worried about your hearing loss and the pain you have been experiencing on your right side of your head.’
(Nice, right, I already deal with major migraines that plague my left side. Now, my right side.)
He continued, ‘I would like you to have a CAT scan done to check for a tumor.’
I’m like well, ‘okay’.
A few days after this I get a call to schedule this CAT scan… about four weeks away. Nothing sooner available. Uuugh. Not knowing kinda sucks. My mind races through ‘what ifs’.
Stressors Tug at my Confidence
Consequently, everything around me: all the stressors of my five children being homeschooled, my masters classes, and yet more car problems start turning my little world darker. The blankets that I sleep under become so tossed and turned at night that it looks as if I slept in a tornado.
Where was my confidence in Christ then?
I am supposed to be a Christian, right? I know the truth.
Oh, wait! I know the Truth!
Yeah, it slips my mind at times and I have to remind myself that come whatever the doctors say God is my God who loves me.
Come whatever scenario that washes over my mind, God has got me.
Come whatever breaks down in this body. God holds me together.
Come what may God has my wife and children and me.
What is Confidence?
Let’s consider it. Confidence is a kinda funny word. It comes from Latin, meaning ‘have full trust.‘
In giving trust I ponder who it is I am focusing on.
Is it myself?
Am I one of those people who walk through the world with my chest full of air and carrying oneself with trust in one’s temporary place in this world?
Or do I fix my eyes on God, the author of me?
In all of this, I have learned confidence in looking beyond the veil of ice-piercing pain, beyond the thunder cracking its whips in my ears, and I see Jesus. Even when the waters under my feet are pulling me down, I know Jesus and I find myself fixed in determination beyond the condemnations of this world and broken body to trust in the one who gives me real life.
I fix my eyes on Him who is the God of this storm.
Who do you trust in your storms?
-Jonathan Thorne
P.S. How do you find confidence. Come write about scripture that gives you confidence today. Contact me or click to learn more about guest posting for us at Mandy and Michele – Just Holding it Together.
Question: What medications do you use for fibromyalgia?
curleque by Coffee at pixabay
RE: Fibro Medications
Savella
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.
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!
TWO: Use topical/internal products for temporary/supplemental relief (herbal remedies, oils, rubs, supplements, etc.).
THREE: Reduce your body’s natural tendency to stay stuck in the fight/flight/freeze response with a deep breathing RESET (help to restore/balance your body’s autonomic nervous system – ANS – response)
FOUR: Get outside. Nature Walk. Move your body in ways that feel comfortable and healing to you – body movement, fitness, detoxification, etc.
In trying to come to terms with my sore hands and lack of energy with my fibromyalgia, I have come up with some new tricks to help in cooking meals.
LeeRoy Good – Fibro Files
Here are my top three tips for coping with Fibromyalgia in no particular order: 1- Hydrotherapy; 2- Deep uninterrupted sleep; 3 – the Mediterranean diet
*Note – Leeroy has an excellent forum of fibro bloggers. We all share our latest post every Friday here. If you haven’t joined, you should do it.
Cynthia Covert – The Disabled Diva
Ways to reduce morning foot pain that are easy and won’t break your bank account.
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…
Melinda shares to provide awareness more many things including chronic pain and fibromyalgia. Her Top three tips for fibro are: 1) a good sleep self-care routine 2) Nature and 3) Time Saving
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.
I’ve heard that we can re-train our minds and deter some of our pain. This year, I would like to instill some “feel-good” scriptures in your minds to help fight against the drudgery of our invisible pain. I have asked fellow pain warriors to write a quick note of encouragement using scripture that helps them get through the pain. Here is the first one by my dear friend, Bettie Gilbert who has shared here on the blog before.
curleque by Coffee at pixabay
Dear Family and Friends,
Thank you for being so concerned for my health, and for asking how I am getting along.
Recently I was reminded of a Scripture Verse that confirmed what both my Physical Therapist and my Counselor had shared with me:
“Remember [carefully] the former things [which I did] from ages past; For I am God, and there is no one else; I am God, and there is no one like Me.”
Isaiah 46:9 Amp
Did you know that the same areas of your brain that were triggered during a pleasant experience years ago, will be triggered again just by remembering it?
My counselor offered a beneficial practice for me then, on days when I am feeling low or depressed. She said that if I would look back and try to remember better days, and to even try to think about the specific details of a good experience, then those same areas in my brain would be triggered with “feel-good” chemicals now.
My physical therapist went a step further and said that studies have found a real benefit in pain therapy when a patient can remember a time of exertion, such as walking or working out, and slowly pace out the memory as if they are “walking” again in their mind. The right-left sensations trigger those same areas in your brain to produce those “feel-good” chemicals, and even can stimulate pain relief in some patients.
Walk the Halls of Memory
So, on days when you see me feeling particularly low about the days gone by and all that I cannot accomplish now, maybe we could join in a session of “therapy” and walk the halls of our memories together. Who knows, maybe your own “feel-good” chemicals might be given a boost as you share those pleasant memories also.
Isn’t the working of our human body and brain incredible?
Truly we are “fearfully and wonderfully made” as the Psalmist tells us:
“I will give thanks and praise to You, for I am fearfully and wonderfully made; Wonderful are Your works, and my soul knows it very well.”
Psalm 139:14
images created in canva.com by Mandy
I am praying for you my dear loved one, as you have reached out to me. May you feel so blessed by God as He pours His compassion through you.
Your loved one in Christ,
BettieG
curleque by Coffee at pixabay
Thank you Bettie for reminding us of these feel-good scriptures. We can always depend on you to come through with great encouragements.
IT’S YOUR TURN!
Share an encouraging post on your feel-good scripture. It can be about getting through whatever you deal with… not just pain like Bettie and I..
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