Fibro AFfects the Senses

5 Ways Fibromyalgia Pain Assaults our Senses

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.

fibro affects the senses
not shaken

Even in the Night, I Will Not Be Shaken

Shaken to my Core

If you knew me in my young years, you know that I could have been the Dairy Poster Child. I grew up on a family dairy farm. Once I left the farm, it seemed that there was nothing to talk about but cows. There was nothing like a tall glass of fresh milk right from the bulk tank. It’s what I missed the most, I think. It took me a while to get past the taste of pasteurized milk and I didn’t dare drink 2% milk. When I visited a friend’s home, they offered milk, I would ask, “Is it whole milk?”

So when I learned that I have osteoporosis. It was quite a shock to me. For a day or two, I really could not grasp how it could be that my bones are not strong; that I was at risk for fractures and breakage. Adding this to all my other diagnoses was more than I could bear. Like David, I cried out to God, “How long, oh Lord? I can’t take any more problems. Please no more pain.”

God Speaks

Since I had morning appointments that day, I didn’t get to sit down with the Lord until that afternoon. (Maybe that is why I was so shaken… I had not invited Him into my day yet.) Anyway, God began giving me messages all day. As I did my study with Gracefully Truthful, He said to me, “I will not leave you as an orphan. I will come to you.” (John 14:18) Thank you, Lord, for this reassurance. I began singing this song the rest of the day.

Encouragement from Friends

“Gracious words are a honeycomb, sweet to the soul and healing to the bones”

Proverbs 16:24 NIV

They may have not known that what they shared was for me, but it was. All through the day, I received gracious words just at the right time. Have you ever seen a cross-section of a bone? It’s like a honeycomb. Unless you have osteoporosis… then it’s more like swiss cheese. See National Osteoporosis Foundation

The words of my friends were like a honeycomb, sweet to the soul and healing to the bones. Friends offered up prayers. Sometimes it was just sharing a quote or scripture. They had no idea that God inspired them to share it for my purpose. That night my dear friend at Alabaster Girls post this prayer.

Father, I am loved by You, an extraordinary God, a good, good Father. Your love makes life worth living. Because of You I don’t have to be afraid of tomorrow.

You are my peace.

Thank You for Your grace that truly is sufficient to carry me through the difficult places. I don’t like the difficult places, Lord — You know that. And yet I find You there. You draw near and strengthen me. You pour out Your love on me and it quiets me, giving me strength.Help me keep my eyes on You, Lord.

In Your presence I find joy, courage, and the tenacity I need to keep moving forward.

Bless You, Lord. What a wonderful God You are.

In the Name of Jesus I pray, amen.

Nan Trammel Jones, The Alabaster Girls

But I Still Tossed and Turned for Many Nights

All these things and more I have known since my youth. I know that God will not abandon me. I know He will see me through. But I am tired and my pain has been unbearable lately. Just the pain alone was waking me up and then my mind would start running away wondering what would happen next.

One of the girls from The Alabaster Girls group had friended me earlier that week but I was not “in the mood” to talk with a new person. She was from halfway around the world. And I wasn’t sure of her connection to me at that point. She kept gently prodding me to respond to her. But I like being the encourager and I didn’t have it in me to chat with someone new. Then she sent an audio clip… She sang “Pass me not, oh gentle Savior, Hear my humble cry. While on others thou art calling, do not pass me by.” And tears came to my eyes. It was my prayer. We chatted and I shared a bit of my story. She promised to pray for me.

Preaching to myself

On the second day, I saw the writing prompt for Five Minute Fridays – “STRONG”. I wondered, “Could I write about strong bones when it was so raw to me?” In the past, I have looked through my old posts to see if there was anything I could update and share. And there it was “When I am weak, He is Strong”. As part of that post, I shared an old hymn written by Annie Johnson Flint. I didn’t know it then, but Annie was orphaned as a child, and by her teens suffered severe arthritis and was soon wheelchair-bound. I’m learning more and more that it is those who go through great trials that have the most beautiful poetry and songs. Do you know her hymn, He Giveth More Grace”. That’s the grace God is giving me.

When we have exhausted our store of endurance

When our strength has failed ere the day is half done

when we reach the end of our hoarded resources

Our Father’s full giving is only begun

He GIveth More Grace, Annie Johnson Flint

I Will Not be Shaken

Finally, I stumbled on this scripture which woke me up to realize that God has got this. I do not need to be shaken. It is quite appropriate with words like: “even at night”, “my thoughts trouble me”, “I will not be shaken”, “my whole being rejoices”, “my body rests securely”, “You will not abandon me”, “You will not allow your faithful one to see decay”.

I will bless the Lord who counsels me—
even at night when my thoughts trouble me.
I always let the Lord guide me.
Because he is at my right hand,
I will not be shaken.

Therefore my heart is glad
and my whole being rejoices;
my body also rests securely.
10 For you will not abandon me to Sheol;
you will not allow your faithful one to see decay.
11 You reveal the path of life to me;
in your presence is abundant joy;
at your right hand are eternal pleasures.

Psalm 16:7-8

I Need to Memorize This Verse and Quote it in my Bed at Night

Interesting that just last year, verse 11 was my verse for the year. I should have read more of the context, eh?

A Word For You

Don’t allow the old devil to get you shaken. Let’s keep our eyes on Jesus for in His presence we have abundant joy!

Mandy

5 Steps Toward Joy in Adversity

It’s easy to lose our joy in the world we live in. 

Originally posted in ggmandy dot com on November 10, 2016 
 

Just watch the news or even just look at your own life, your failures, your unfulfilled dreams, the junk that life is throwing at you, and boom! you’ve fallen into the pit of despair. But I believe that we have a choice whether we stay there in the muck or find joy in the moment. The apostle Paul wrote of that joy sitting in a prison in Philippi. (Philippians 1:3-7) So if he can do it .. we can do it! Right? 

But how can we have joy in adversity? 

That is the question. And that is what I have been searching for this year. Let me share a few steps I am learning to take … 

1. Understand that joy and happiness are NOT the same things. 

You can have both or you can have one but not the other. The difference is the source. Happiness is a result of some outside force. It is dependent on our “happenstance”. We are happy because of what is “happening” to us. We are happy the day we graduate or get married or when we receive a gift. But joy is much different. It comes from inside of us. The scripture says … 

 The Lord is my strength and shield. 

    I trust him with all my heart. 

He helps me, and my heart is filled with joy. 

    I burst out in songs of thanksgiving 

Psalm 28:7 (NLT) 

If you take a look at the context of this verse (as with many of the Psalms) you will find that David was crying out to God. His circumstances were anything but good. He had enemies all around him, yet .. he was “bursting out in songs of thanksgiving”. Wow! Just knowing that the Lord was with him was enough to sustain him, to keep his joy. 

Steps Toward Joy Through Adversity: Understand #Joy and #Happiness are NOT the same Click To Tweet

2. Read a Psalm every day. 

As I mentioned before, nearly every Psalm begins with distress, speaking out the trouble he was in; but before he gets done, he is praising the Lord. There is nothing better for us than having an example set before us and the Psalms are it. Read one every day and you will be reminded of how awesome our God is. How much He loves you. 

3. Praise the Lord. 

We were created for praise. God made us for this sole purpose.

Psalm 148 says ” let every created being praise the Lord.”

Praise opens the door of communication with God. And that is what He desires. Being in His presence, in communication with Him fills us with joy. If we start looking for something to praise the Lord for, we will find it. There is always something to praise him for. I am reminded of a song the Imperials sang many years ago. “Praise the Lord“. It said,

‘When you’re up against a struggle that shatters all your dreams … Praise the Lord.” Every word of this song is on target. 

Praise the Lord by The Imperials

Let’s go back to that prison in Philippi.

Paul and Silas began praising the Lord. What happened next? An earthquake opened the prison doors, broke their chains, and ultimately the prison guard and his family were saved. That’s what happens when others see us being victorious in and through our struggles. We are always wanting God to take us out of the situation, but maybe God has placed us there to bring others to Him. 

4. Additionally, Give Joy to Others. 

shut-in crochet joy in adversity

I recall when I was single and lived far from home and family. I would get lonesome and depressed. So I would call home. Mom told me time and again, to get out and do something for someone else and it would help. You see when you give joy to others it comes right back to you. It’s one of those “reap what you sew” ideals. If we go around complaining and grumbling, we get grumbling and complaining in return. When we start doing for others and see the joy it gives them, guess what, we find that the joy rubs off on us! 

Since my health began to fail, I took up crocheting again. I learn to crochet way back in high school through the 4-H program. Never really got the hang of it. But I decided to give it a try once again. But I need a reason to crochet. So I started looking for who I could make something for. First there was a new baby, then a wedding. Then I decided I would make a shawl for all our shut-ins. That has kept me plenty busy. But here’s the catch … the absolute best part. When I finish a shawl. I can hardly wait to give it away. I am beside myself while I watch them open the package and take out the gift. And it’s not just a blessing that one moment. every time I see them, they speak again of how they love the shawl! And there it is .. abundant joy! 

5. Finally, some practical advice … 

A. Eat right. I know we don’t like to hear it; however, our tendency when we get down is to go eat a bucket of ice cream! Come on , you know it’s true. And I’m not saying that you can never eat ice cream. But do it with moderation. Slow down and eat a few bites. Be sure to enjoy it. And then get right back to eating right. 

B. Get your vitamins. Most of us are vitamin and nutrient deficient. So eat those fruits and vegetables. Resist the grains, bread, sugary desserts. You may need to have your doctor check some of those vitamin levels, such as Vitamin Bs and D. 

C. Spend some time outside EVERY day. Soak up some natural vitamin D. Take in God’s beautiful world. 

D. Do what your doctor says. Take you medications faithfully. 

E. Exercise. (Did I have to mention that one?)  Sorry. But it can help you feel better! 

Okay. I am #preachingtomyself here. But maybe you can come along for the ride and find your joy too! 

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swollen knees

Diagnosis Knees – Osteoarthritis or RA

more diagnoses knees
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Once I finally had a diagnosis, I was able to get on a regimen of Savella. This relieved the majority of my pain. At least I was able to move about. We started working on reducing my 40mg of prednisone down to a more acceptable level. This was no easy feat. The pain would return with just a slight decrease. If I remember, we had to reduce by 5 mg, and then later only 1 mg. (I only recently was able to get completely off the usage of prednisone. It took me ten years!)

It’s Off to the Orthopedic Surgeon

But it only took a few months for my knees to begin to swell and be painful. So, we headed to Hughston Clinic. After x-rays and MRIs, the doctor determined that I had a torn meniscus. So we scheduled surgery. How wonderful that Dr. Collins is a Christian. By his request, he had prayer with me before we went into the OR. His staff is amazing. They checked on me several times after the surgery. I highly recommend Hughston Clinic if you live in SW Georgia.

The surgery went well, he was able to repair damage and clean out a lot of arthritis. He took pictures that showed a lot of gnarly mess. So when we met with him again, he said he would send me back to Mayo Clinic because he wasn’t certain that it was just osteoarthritis.

Back to Mayo Clinic

Already established at Mayo, it wasn’t as difficult to get an appointment. I saw my rheumatologist. He looked at the pictures and said, “This is severe osteoarthritis”. OK. No Surprise here. I was very accident-prone on the dairy farm. As a child, I was always incurring stupid injuries that weren’t too severe. I figured then that one day, I would have plenty of arthritis.

While he felt the diagnosis for knees was osteoarthritis, he decided to run the tests for rheumatoid arthritis again. Low and behold, this time it came back as R.A. We had caught it early so I was able to take Methotrexate rather than a biologic.

Why Didn’t It Show Up Before?

Apparently, the prednisone was masking the RA. I had been concerned this would be a problem all along. The steroid helped me “feel” pretty darn good, But in fact, steroids are an anti-inflammatory drug. So the numbers in the blood work came back good. I figured the steroids caused my numbers to be all over the place when I was tested back home.

swollen knees - steroids hide the real problem
photos from pixabay-Bolova59

The Methotrexate has kept the RA pretty much under control these 10 years. Osteoarthritis of the knees continues to be aggravating on a daily basis. Other fibromyalgia pains and other issues keep popping up now (10 years later). So, we are considering other medication options.

This brings us up to the Spring of 2013. Stay tuned for another addition to Mandy’s Journey with Pain or click here to see what you may have missed.

-Mandy

Laughter Really is the Best Medicine

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
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.

syringe
 OpenClipart-Vectors at Pixabay

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.

journey with chronic pain

How I Found Refuge as a Chronic Pain Warrior

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?

Keep Eyes on Jesus

Confidence Comes With Eyes on Jesus

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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Wait, Wait Patiently

Did you say “Wait PATIENTLY?”

Yet I am confident I will see the Lord’s goodness
while I am here in the land of the living.

Wait patiently for the Lord.
Be brave and courageous.
Yes, wait patiently for the Lord.

Psalm 27:13-14
Wait Patiently
Image created in Canva.com: girl image by Ryan McGuire at Pixabay.

Wait. Again, wait.

I’ve heard it so many times over those first four years. And it never has become easier to hear. We all want everything now. But God kept telling me to wait.

Getting a diagnosis is a long process. There were 6 weeks of waiting while my primary care doctor tried different medications to ease my pain. There were blood labs to wait for. Finally, he decided to send me to a specialist.

At first you think. “Good. Now we will get to the bottom of this.”

waiting patiently
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But then there is more waiting.

Wait to schedule an appointment.

to see the doctor.

to get more blood work results.

Wait to see the doctor again.

And then you hear the words, “I’m baffled. We need a second opinion.” This time we were referred to Mayo Clinic. The doctor said to wait for their call to schedule an appointment. This was a month-long wait.

And finally, we get the call.

“We will put you on the waiting list.”

“OK. How long will that be?”

“Up to six months.”

My heart sunk.

How could I keep waiting that long?

was on high dosages of steroids, just to be able to make it through the days. How could I do this for six months? That was just before Christmas. Fortunately, we received a call after Christmas that an appointment opened up at the end of January. Of course, we accepted the appointment and waited again for the next few weeks.

By this point, we were ready for any kind of diagnosis. It is so frustrating to wait with no idea what is going on. We were tempted to say,

“Tell us anything, even bad news, so that we can deal with it.”

Just as we expected, the first visit was only preliminary. We met with one doctor and, of course, the phlebotomist …. They took 16 vials of blood! And then we waited.

First Diagnosis

We waited to be scheduled with 5 different specialists and more testing… four more months. At the end of that week of appointments, I received the diagnosis of Central Sensitivity Syndrome (CSS) with indications of Fibromyalgia, Chronic Pain Syndrome, and Myofacial Pain Syndrome. In other words, I have a lot of pain.

While we had hoped for more help than that, it was a start down the road to managing my pain. The doctor prescribed the first medication that would help me better deal with pain, Savella. And it connected us with an excellent rheumatologist and later Mayo Clinic Pain Center. Across these 9 1/2 years, these have been a Godsend.

What’s the Point?

Finally, my point today… good answers seldom come quickly, through all my life, I have heard the instruction to “wait” … from God …. my parents …. From school teachers.

Did you ever notice that we never seem to be able to hear it once and then just sit down and wait. We are like little children, we sit down for two minutes and then we are up asking, “Is it time yet?” Sadly, I don’t really have a word for the wise today.

I’m just here joining the choir of those who are telling you ….

“Wait, Wait patiently on Jesus”

Mandy Signature
Savannah, GA

Have you missed any of my posts on this Journey with Pain?

Trials – It’s All Relative

We all have trials in life. Sometimes they can be overwhelming. But truly it is all relative when we take our eyes off ourselves and look around. Even better Look to Jesus.

1 PEter 5:10

Stand firm … and be strong in your faith. 
Remember that your family of believers all over the world 
is going through the same kind of suffering you are.
In His kindness, God calls you to share in His eternal glory
by means of Christ Jesus. So after you have suffered a little while,
He will restore, support, and strengthen you, and
He will place you on a firm foundation.  1 Peter 5:8-10 (NLT)

1 Peter 5:8-10 (NLT)


Alone in Our Trials

Our trials can cause us to feel so very alone. No matter the trial, many times our friends disappear after a week or so. It may seem that no one understands what you are going through.

For me, doctors were baffled. The testing all came back normal. We were tempted to feel that even the doctors did not believe me. Some doctors were compassionate, some were not.

We Are Not Alone in our Trials

One thing I learned while sitting in waiting rooms of the doctors’ offices, labs, clinics, especially Mayo Clinic, was that I am not alone. It was overwhelming to see how many people are suffering and they are suffering much more than I. Not to use their pain to ease mine, but it does put it all into perspective.

When I looked around, I saw that I had little to complain about and so much to thank God for. My suffering was inconsequential compared to what many have had to deal with.

Alone is Relative

Alone is relative

If I expand the scope of sight to Christians around the world that are being tortured and killed for their faith, I really have nothing to say at all. And ultimately, when I look at what Jesus Christ did for me, I am ashamed that I would even want to put myself in the same category.

However, I am comforted to know that He knows my pain and He holds me up. He is my support, my strength through my trials. And that my “light and temporary suffering” will not last long. After a little while, He will lift me out of the miry clay and put me on a firm foundation.

Let’s Consider… how can we trust God to support and strengthen us when we go through various trials?

1) By leaning on His promises. Reading scripture has lifted me up so many times through my trials, but listen, there are times when you are not able, for whatever reason, to actually read the scriptures. This is why I have always encouraged scripture memory. If you have hidden His Word in your heart, he can bring it to mind when you are unable to read it for yourself. Meditating on memorized scriptures has been my main support when I am having procedures or injections that are painful. I was able to concentrate on the scripture instead of what the technician/surgeon was doing.

2) Resist the devil Quoting scripture is one of the best ways to give the old devil a beating when he tries to get his foot in the door. And believe me, he will try to bring you down. He will whisper all kinds of lies in your ear to convince you that you deserve this pain, or to become angry at those who have been the cause of your pain, or to get you feeling sorry for yourself. He has so many ways to deceive us.

3) Singing His Praise. We’ll get more into this down the road. But I just want to mention that praise is a key element in the survival of the fittest. If you can’t sing; that is, your trial is so deep that you are unable to make music,  then just meditate on the words of a hymn. Godreminded me this old hymn which has become so meaningful to me … as if I had never heard the words before. 

Click to Read the Words and Listen to this Old Hymn…

Until next time;

Mandy

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What Tips for Fibromyalgia or Medications do you use?

Question: What medications do you use for fibromyalgia?

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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.

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 KellenbergerMy 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,