Category: Letters to Friends About Fibro

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.

Fibro AFfects the Senses

5 Ways Fibromyalgia Pain Assaults our Senses

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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!

Ringing in the ears and dizziness are also problems that can arise since your ears can affect your balance. Make sure you visit an ENT occasionally as well. Fibromyalgia and Hearing Problem: Fibro Affects your Ears – Women With Fibromyalgia (fibrowomen.com)


4. Our Nose Senses the Pain

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.

Fibromyalgia and Sensitivities: What’s That Smell? (fibromyalgianewstoday.com)


5. The Mouth Senses the Pain

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.

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fibro affects the senses

Laughter Really is the Best Medicine

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Take Your Medicine

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. 

medicine
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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.

syringe
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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
medicine is good medicine

 The best medicine for that is laughter. So I try to find ways to keep laughter around me. Here are a few ideas …

  1. Share a joke or something funny on Facebook every day.
  2. Watch funny sitcoms. I like the old re-runs that are much cleaner.
  3. Watch comedy movies.
  4. Christian Comedian DVD’s [Tim Hawkins, Mark Lowry, Ken Davis, Etc]
  5. Reminisce about the good old days.
  6. Invite your funny friends over for a visit.
  7. 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.

I’m trying to write and share about my experiences. Just click here for a Table of Contents of what I have written so far.

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journey with chronic pain

How I Found Refuge as a Chronic Pain Warrior

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This God—his way is perfect;
    the word of the Lord proves true;
he is a shield for all those who take refuge in him.

2 Samuel 22:31 You really need to read the whole chapter

Where are my Friends?

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.

2 Samuel 22:31 refuge

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.

prayer Loneliness Chronic Pain
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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.

Where or Who is Your Refuge?

-Mandy

Are you Caught up on Mandy’s Journey w/Pain?

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Keep Eyes on Jesus

Confidence Comes With Eyes on Jesus

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Fix our eyes on Jesus the author and finisher of our faith.

– Hebrews 12:2
Eyes on Jesus Hebrews 12

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.

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    Eyes on Jesus Jonathan Thorne

What Tips for Fibromyalgia or Medications do you use?

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Question: What medications do you use for fibromyalgia?

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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.

Finally, after six months, I received an appointment with Mayo Clinic. I spent several days having tests and seeing different doctors. The Rheumatologist gave me the diagnosis Central Sensitivity Syndrome with indications of fibromyalgia, myofascial pain syndrome, and chronic pain syndrome. Yep! I have lots of different kinds of pain. This doctor prescribed Savella and I have been taking it ever since.

It’s taken all these 9 years but I just recently eased my way completely off of prednisone!

– Mandy Farmer

For more information and financial aid for Savella click here – Savella (milnacipran HCl): Official Site

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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.

Discussion on Medications

Shelley Clark Smith – The Chronic Mom

Excellent post discussing all the different medication options, Cymbalta, Lyrica, Savella, and more

Donna Gregory – Fed Up With Fatigue

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!

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Tips for Fibro From a Fibro Coach

Sue Ingebretson – Rebuilding Wellness

ONE: Drink enough water to adequately hydrate your body.

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. 

READ MORE HERE

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Tips for Fibro from other Fibro Warrior Friends

Unfortunately, most cannot afford medications or have little success using them. I am providing some tip teasers and links for you to follow.

Carrie Kellenberger – My Several Worlds

Carrie - artwork coping with pain
provided by Carrie

Carrie offers some great ideas on her post including 1) Minimize Stress 2) Balance work and Life 3) Be Creative … Carrie has interviewed on my blog. Click here to see her creative work.

Glynnis Robin Hicks – The Sacrificial Home Body

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.

Katie Clark – Painfully Living

Tips for Fibro Katie Clark
  1. List to Yourself
  2. Educate Yourself
  3. Selfcare

Bettina Bier- Me, Myself, & I

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…

Nikki Albert – Brainless Blogger

Nikki shares three wonderful tips: 1) Mild Exercise 2) Basic Supplements 3) Relaxation

Bethan Catherine Jones – Hello Fibro

More Wonderful Tips for Fibro – 1) Listen to your body 2) Be Honest 3) Don’t Give Up on Yourself

Melinda Sandor – Looking For the Light

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

May 12 is Fibromyalgia Awareness
Thank you Melida for this image

Alisha Nurse – The Invisible “F”

Fibromyalgia comes with a wide range of different symptoms which are often challenging to manage. In this post, Alisha offers three of her top tips for living with fibromyalgia.

Cynthia Cooper Baughman – My Inspired Fibro Life

Three Tips from Cynthia – 1) What you eat matters 2) Movement is important 3) Moderation is Key!

Thanks for Sharing,

  • Tips for Fibro

Losing it All ~ LEGACY LINKUP

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Have you ever felt like you were losing it all? 

losing it all IG
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Originally Published Date: June 17, 2016, on ggmandy dot com

I Know I Have!

When fibromyalgia set in, So many of the things I loved were lost.

  • I lost working with children at church. 
  • 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. 

losing it all PIN

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.

Mark 8: 34-38 

He lost EVERYTHING for you and me.

Shouldn’t we lose it all for Him?

Matthew 10:39 Losing it all

Lost in Him; 

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Savannah, GA

LEGACY LINKUP – IT’S YOUR TURN

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Awesome Scriptures that can Trigger “feel-good” Hormones

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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.

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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
psalm 139
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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

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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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my life with fibromyalgia; fibro warriors, letters to friends about fibro life

Fibro and RA ~ Mandy’s Journey with Pain

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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.

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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. 

September 2011

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. 

October 2011

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.

December 2011

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.

January 2012

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.

March 2012

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.

June 2012

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.

January 2013

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.

March 2013

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.

More of My Journey with Pain

I answered more questions with Bettina on her blog, Me, Myself, and I

I also did a more detailed series of my journey back in 2015. You can find that series at my personal family blog, The Farmers Place ~ 31 Days of Waiting and Trusting

Thanks for Caring;

Mandy

journey with pain
images created by Mandy at Canva.com
pain and suffering

Pain and Suffering: An Indication of God’s Love

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This is Going to Hurt me More than it hurts you

Have you ever heard your parents say this to you? I can remember a time or too when it was said to me. However, it wasn’t until I had children of my own that I saw the truth in that statement. We never had to discipline our children much but when the need arose, it broke our hearts.

It’s the same with God.

pain and suffering

He loves us so much and He wants to keep us on the right path. And as we know there are times that the only way to keep us on the straight and narrow is to apply the rod of discipline.

I learned this lesson when I was hit with chronic pain in 2011. It was excruciating. But as time went by I realized that God was trying to get my attention. I was “working for the Lord” … very busy with children’s ministry and other things that draw the attention of a pastor’s wife. But in retrospect, God was saying to me, ‘Hey, you going out on your own and forgetting to rely on Me.” It was then that I turned my attention back to God. I got serious about studying His Word. And I found this statement from David.

It was good for me to be afflicted

so that I could learn your statutes.

Psalm 119:71

God Allows Pain and Suffering for Many Reasons

Certainly, God allows pain and suffering because He loves us. But there are other reasons as well. C.S. Lewis states in The Problem of Pain,

“We can ignore even pleasure. But pain insists upon being attended to. God whispers to us in our pleasures, speaks to us in our conscience, but shouts to us in our pains: it is His megaphone to rouse a deaf world.”

C.S. Lewis, The Problem of Pain

Have you ever noticed that when tragedy comes, this is when people turn back to God? (At least for a while). And this is God’s purpose. .. to draw us back to Him. He did it time and again in the Old Testament. We may need to repent of sin or just develop our faith. You see, He doesn’t want us to stay infants in Christ. He wants to bring us to maturity.

Like a Shepherd, He gently guides

We, humans, are like sheep. dumb and ignorant. God places us in a green pasture and we start gobbling up the grass, never looking to the right or the left. Until that moment, when we look up and we are nowhere near the rest of the flock and now we don’t know how to get back.

So we need a shepherd to guide us and correct our paths. Just as David said in the 23rd Psalm. He allows us to go through the shadows of death, but He is right there to guide us and comfort us. He never leaves us alone.

Not long after my illness began, a friend reminded me of a wonderful book, Hannah Hurnard’s Hinds’ Feet in High Places.

a timeless allegory dramatizing the yearning of God’s children to be led to new heights of love, joy, and victory. In this moving tale, follow Much-Afraid on her spiritual journey as she overcomes many dangers and mounts at last to the High Places. There she gains a new name and is transformed by her union with the loving Shepherd.

Hind’s Feet in High Places, Hannah Hurnard

One surprising element in the book was that the Shepherd gave her a guide named, Suffering. Why would she want this guide? But the Shepherd assured her that Suffering was the best guide she could have. I have found it true as well. My pain and suffering has kept me at the feet of Jesus and caused my faith to continue to grow.

Even Years of Pain and Suffering are for our advantage

I just reached year 9 of chronic pain. LIke Paul I have talked with God about taking the pain away. But God and I have come to an understanding.

Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.

2 Corinthians 12:9
2 corinthians 12:9 My Grace is all you need

You see, I have found that through my pain I have many blessings.

  • I am maturing in Christ daily.
  • Writing and blogging have been my new ministry.
  • Friendships around the globe have been cultivated.
  • I have more empathy for those who suffer.
  • Becoming an advocate for others who suffer.

I previously wrote about these things and came to one conclusion, If pain is what it takes to keep me in the center of God’s will, then …

BRING ON THE PAIN!

Mandy Signature
Savannah, GA

I agreed to review this book because of my own journey with pain. What a great reminder of the reasons God allows pain and suffering in our lives. Just as we discipline our children when the veer off the path of righteousness, God also loves us enough to direct our path on the straight and narrow.

All of us will at some time, experience a bit of pain and suffering. That is when it is time to remember that God is with us in the Furnace of Affliction and it is for our good.

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Brain Fog

What is Fibro Fog? Why are you Crashing?

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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.

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curleque by Coffee at pixabay

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. 

When Fibro Fog takes over. #fibrofog #fibromyalgia Click To Tweet

Fibro Fog and The Crash

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 pass and 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.

I need you to love me and remind me this will pass. #fibro #painawareness Click To Tweet

Thank You for loving 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,

Nan

Thanks, Nan!

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!

What is Fibro Fog? #fibromyalgia #painawareness Click To Tweet

Friends,

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?

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curleque by Coffee at pixabay

You may visit Nan on her website: www.NanJones.com or her facebook ministry page, Seeing Beyond The Veil. For personal communication, you may email Nan at nan@nanjones.com

The Perils of a Pastor’s Wife is available on Amazon, Barnes, and Noble, and LPC Bookstore  {Affiliate links will support Nan Jones’ ministry}

  • Fibro fog Crash