About a year ago, I learned that I have severe osteoporosis. I was literally, blown away by this news because I was a lover of all this dairy. But this was caused largely due to medications that were stealing calcium from my bones or not allowing it to absorb into my bones. On top of this because of my debilitating diseases, I was not getting any exercise. And if you aren’t doing weight-bearing exercise, your body is not being instructed to build bone.
Now, at my diagnosis, I’m sure that my doctors said to try to exercise some. But they never gave a “why” to exercise even though it hurts. No one said, “Look, if you are moving then down the road you will have osteoporosis.” And though it was the drugs they prescribed, they didn’t instruct me to get a DEXXA scan earlier than the typical age of 65.
Seriously, friends, when it comes to your health, you best be checking those medications and seeing what you are up for. You better take the things your doctors do say seriously. Do your research and ask questions. Don’t assume that your doctor is doing everything he can for you.
You probably know by now that someone with fibromyalgia is very sensitive to touch. Many times the slightest touch or the gentlest hug can cause great pain. I have had people tap me on the arm and it felt like that hit me with a bat. This pain lingers for quite a while before my arm will settle down. This is called Hyperalgesia. I have written before about how this pain feels. But there is more to the pain than this. Fibromyalgia is a sensitivity that extends to ALL the senses.
Fibromyalgia Pain – Making Sense of Other Neurological Issues
1. Fibro and our skin
According to Very Well Health, there are actually 7 different types of pain that one can experience due to fibromyalgia. The first you may be aware of is Hyperalgesia. “Hyper” means excess and “algesia” means pain. This is when the level of pain is turned up. Messages are sent to your brain as saying the pain is much worse than it actually is.
Myofascial Pain is widespread muscle pain. It is “commonly described as a deep and gnawing soreness, stiffness, aching, or throbbing all over the body, including the arms, legs, neck, and shoulders—is a hallmark feature of fibromyalgia. This includes what is called costochondritis which is tenderness in the chest wall. I experience this just from getting an ultrasound breast exam.
Allodynia pain is an itching, burning, tingling, or numbness in the arms. Sometimes I have felt like I have a bad sunburn. Other times, I can’t stand for moving air to touch my skin. I can feel cold on a hot day.
2. Fibro affects our eyes
The way fibro affect my eyes is dryness and sensitivity to light. At times it feels as if someone has stuck a needle in my eye. Over time, it can affect your vision because you are squinting. It is important to see your eye doctor (ophthalmologist, not just an optician) on a regular basis. Don’t neglect your eyes.
3. Loud Noises are Painful to the Fibro Warrior
Noise can cause pain as well. One reason I had to stop working in the children’s department was that the noise level was too high and it hurt my ears. I can’t be in the same room while the vacuum cleaner runs either. Thank goodness, I have a husband who runs the vacuum for me!
Scented perfumes, detergents, and cleaning agents can make someone with FMS feel ill with everything from fatigue to nausea and headaches. Foods smells can also make the fibromyalgia sufferer so sick they don’t want to eat anything, or start eliminating certain foods from their diet, even if they are healthy items.
I can acquire a serious headache when women who love their perfume walk into the room. Some people cannot use anything in their home that has a smell: ie. candles, soap, air fresheners, cleaners. Attending church on Easter can be a horrible experience with all the Easter lilies.
Sometimes, spices are too hot for me. It is strange that it is random. One day I can eat a pepperoni pizza just fine. Then the next day, the pepperoni burns my mouth as if I have eaten a hot pepper. Trust me, I haven’t eaten a hot pepper. 🙂
All the Senses Are Affected
As you can see, Fibromyalgia affects all of the senses. It can be pretty frustrating and many of these issues have no way to help the problem other than avoidance. I hope this helps you understand a bit more about the Pain Warriors Plight. Come back again for more explanations.
Are You Feeling My Pain?
Have More Questions?
Please leave you question in the comments and I will try to answer them.
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.
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.
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 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.
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.
My heart remains true and is awed by Your words. I celebrate because of Your promise, like someone who discovers great treasure. I despise and abhor lies, but I love Your law. Seven times every day I praise You because of Your right rulings.
Psalm 119:161-164 The Voice
Homesick & Heartbroken
It was my freshman year in college. I was 500 miles from home and looking forward to a long weekend home for Easter. I was packed to go and even had riders to share the cost. I woke up Thursday morning for my last day of classes and there was snow on the ground. I received a call from my father in Wisconsin. He strongly suggested that I not come home because the weather between Kentucky and Wisconsin was pretty severe.
I was so heartbroken. I had had a long year fighting homesickness and I really wanted to go home. Dejected, I went to my first class. Being at a Christian college, the professor always opened class with prayer. That is, he always asked a student to pray. That morning, he asked me to pray.
I wondered, “How on earth could I pray?” I was so disappointed that I was not going to be able to go home. We all bowed our heads…
I’m not sure what else I said. I was shocked to hear myself say it. Certainly, I was not thankful for the snow. It was the cause of my demise.
Thankful in the Midst of Trial
It’s hard to be thankful when you are in the midst of trials. Your mind is so centered on your trouble, you can’t really think of anything else. But maybe praise and thankfulness are what helps ease our mind. Maybe it is what helps us make it through. Could it be the way to keep from spiraling down into despair is to continually have His praises on our heart and our mind?
This celebration of His Blessings may very well have been the beginning of a wonderful Easter weekend. I was invited to go to Georgia instead. I visited with a friend AND my aunt and Uncle.
Celebrate His Promises
Soon after the start of my chronic pain. I was introduced to the writings of Ann Voskamp. You have probably seen to droves of Thankful posts on Facebook during November. When I realized that this came from Ann, I decided to read her book, A Thousand Gifts. I was challenged to list three blessings every day for an entire year. That was the beginning of the return of smiles in the midst of the pain.
It truly does make a difference to begin listing the things for which I am grateful.
As the women’s director, I challenged all the ladies at church to take the Joy Dare with me. Several did it along with me. One couple shared with me several times how not only did the Joy Dare make them stop and think of things they were grateful for, but also, gave them laughter. The prompts weren’t always easy to find answers to, but they would laugh trying to think of ideas. What a blessing!
You have probably seen these Joy Dare prompts on Facebook. Go download them and begin your own journey to joy today! It will change your life as it did me and my friends. And as it did for Ann. Notice again the last line of the scripture above. The Psalmist says he gave praise to God SEVEN TIMES A DAY.
Wow! Seven times. I know I’m behind.
Join me and Celebrate his Promises!
My Journey with Chronic Pain
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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.
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.”
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.
“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,
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.
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”
Have you missed any of my posts on this Journey with Pain?
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.
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
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…
Question: What medications do you use for fibromyalgia?
RE: Fibro Medications
Thankfully, Savella has been my “savior” in medications. I have been using the full amount allowed of the drug Savella for fibromyalgia for 9 years now. Savella is the only medication created expressly for the pain of fibromyalgia. It works a lot like an anti-depressant, but it is not used for that purpose. It is a relatively new drug and expensive. Most insurance companies are reluctant to fill prescriptions without your doctor’s intervention. They want you to try medications such as Lyrica and Cymbalta first, which I have done with no help.
I have tried them all
From the start of my serious pain issues, I have tried several different drug possibilities. At first, since we weren’t sure what was wrong the doctor tried a prednisone titration pack. But as soon as I started decreasing the steroid the pain returned. We tried Tramadol with little success. Then Cymbalta which did nothing for me. Neurontin was next but really had no effect. I continued on the large dose of prednisone and occasional Tramadol but this wasn’t all that beneficial.
It’s taken all these 9 years but I just recently eased my way completely off of prednisone!
– Mandy Farmer
May 12 is Fibromyalgia Awareness Day
Several of my Pain warrior friends have conglomerated together to write posts on medication we have had success taking and/or other tips that help us manage our pain. Below you will find a wonderful list.
I know all of us react differently, but these are the fibromyalgia treatments I’ve found most beneficial since my diagnosis in 2014:
• Low-dose naltrexone (LDN) – LDN is one of the only pharmaceuticals that has ever improved my chronic pain and other symptoms. Based on small studies, LDN outperforms all three fibromyalgia medications approved by the FDA.• Medical cannabis – I could not sleep without medical cannabis, and it’s been a huge lifesaver as I’ve struggled with chronic daily headaches. Does it eliminate the pain? No, not exactly. It just makes the pain more tolerable.
• Infrared sauna – I’ve never regretted purchasing my infrared sauna. It helps immensely with that all-over achy feeling, and it’s heaven in the winter when it’s so cold that my bones hurt.
• Magnesium – I use magnesium both topically and orally. Topically, it helps to reduce overall achiness, leg/foot cramps, and restless legs. I also take a magnesium glycinate supplement, which improves all of the previously mentioned issues and keeps me regular!
Find something to distract yourself from everything. For me it’s painting, watching my favorite comedians & favorite shows. Music is good for my soul, a walk-in nature does wonders for me. Well, I have a dog, so it’s time to go outside. and more…
I was soooo ready to step off that cruise ship but it didn’t bring me joy. My body kept bouncing on the inside. You have heard of sea legs, right? Well, I kept them after we stepped on land. It’s typical for this to happen but it goes away quickly for most people. But I have never been that average. I always have to do things a little differently, from everyone else. Haha!
Time to see a doctor
Three months later, I’m still having these bouncy feelings. Thankfully, no spinning rooms, I just felt like I was still sitting on that tender boat; bouncing, bouncing along. The only time I actually felt better was riding in a car which is kind of ironic. Before this, I was always the one to have motion sickness.
My PCP had no idea what was going on so he sent me to an ENT. We did several tests and ruled out major possibilities. He “landed” on disembarkment syndrome. It’s rare, but people acquire this and live with it for years. That would be me.
MORE SYMPTOMS ARRIVE
Two more months bounce by until I woke up one morning in July with a crick in my neck. I could barely turn my neck. Driving was getting a bit dangerous. I would have my daughter always watching that I didn’t move into another lane and run someone of the road. Finally, I decide to visit my chiropractor. I was dumb enough to say let’s not do an x-ray this time. But when he tried to do an adjustment, nothing would move. Until, it did, causing so much pain.
In August, I had an episode at church leading the children’s choir. I lost my breath and all energy. Turns out my thyroid numbers were completely off. I had missed a few days of medication waiting for a renewal but my doctor said, it shohuldn’t have caused a problem that quickly.
Still bouncing from day to day, I managed to feel fair enough until that Sunday in September. I lay down for a short nap. Or I should say I tried to lay down. I didn’t get down to the bed before my lower back began to pulse with contraction-like pains. The slightest movement would initiate the contracting again. So, we were back to the doctor again. This time needing a couple men from church to carry me down the stairs and help me into the car. How embarrassing! My doctor couldn’t see any issues so he prescribed a tritation pack of prednisone. That stuff is great!
But it didn’t last. As soon as I started tritating back down, the pain returned. In October, we bounced from one medication to another trying to find something that would make a difference. (Cymbalta, Lyrica, Gabapentin, Tramadol) Nothing helped.
Next, I was sent to a rheumatologist which is a subspecialist in the nonsurgical treatment of rheumatic illnesses, including autoimmune diseases and especially the many forms of arthritis and joint disease. Tons of blood work baffled him. My labs were all over the place and he could not make a diagnosis. He opted for a second opinion at Mayo Clinic in Jacksonville. Mayo Clinic is an awesome, amazing place but it takes months to get in. I wasn’t excited about waiting with all this pain.
Be Still is Not Always a Good Thing
Toward the end of the month, my leg began to swell every time I got out of bed to the point that I couldn’t put my foot on the ground. So back to the doctor we go. This time after an ultrasound on the leg, I was admitted to the hospital for observation and getting shots in the stomach for a DVT (Deep Vein Thrombosis) better known at a blood clot. I had to learn to do these injections in my stomach twice a day. No fun!
Bouncing back home
I was released from the hospital in time for my 50th birthday which basically go by unnoticed. Welcome to old age!
We’ll stop here for now; but my Mayo Clinic experience has already be written and you can keep reading here.
I have not stopped thanking God for you. I pray for you constantly, asking God, the glorious Father of our Lord Jesus Christ, to give you spiritual wisdom and insight so that you might grow in your knowledge of God. I pray that your hearts will be flooded with light so that you can understand the confident hope he has given to those he called—his holy people who are his rich and glorious inheritance.
When chronic pain hits, we might wonder, “How can I have confident hope?” But I soon learned that this hope comes from drawing ever closer to the One Who gives all hope. That is, Jesus!
For me, it was six months of pain before finding any answers. But when I walked through the doors at Mayo Clinic, I felt an amazing hope. Every inch of this place offered hope to me. Then I began to look around at all the others seeking to find answers. Some did not know the confident hope in Christ; however, it was quite obvious that others knew Him well.
Thanks for sharing your confident hope!
I have met several of you who have splashed your confident hope all over me. I’m thanking God at every chance that through my chronic pain, you have become an essential part of my life. I pray for you often that God will continue to bless you with his wisdom and insight through the trials you face; believing it is through these trials that we come to truly KNOW the God of Hope. I pray that your heart is filled with His Light so that you continue in His confident hope and keep spilling it over on the rest of us.
We are His holy people and we are so blessed to be His rich and glorious inheritance. He has invested everything in us to make this possible.
Oh Lord God, thank you for bringing so many chronically wonderful friends into my life. I ask for wisdom and insight for each of us as we daily try to fight off pain with Your help. As David said, “It was good that I have suffered that I might know you,” the God of all Hope, better. Fill us with Your Light today. I pray that Your investment in us will yield great and wonderful results.
In Jesus’ Name, Amen
In what circumstance have you found Confident Hope?
2. Who has graciously splashed their confident hope over you? Have you told them so? Have you prayed for them?
3. Who could you splash your confident hope over?
In His Confident Hope;
Even though my life changed drastically 10 years ago, God has still brought purpose into my life. I have found a little niche in writing. Something I never had time, nor the confidence, for in the past. Chronic Joy is a wonderful ministry to help those with Chronic Illness thrive. I was given an opportunity to write a prayer prompt for them recently.
*** All along my Journey with Chronic Pain, I have met many who have encouraged me. I am so thankful to them. Seeing that others can make it through tells me I can too! In this journey, I have found a wonderful ministry for those with Chronic Pain called Chronic Joy. Today’s post was written for this ministry. Find more at this link.
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