A Diagnosis After Twenty-Eight and a Half Years

July 8th has always been special to me. It’s the date of my youngest sibling’s birthday. Of course, all my other siblings’ birthdays are special too! Later in life, July 8th became more special when I found out it was the birthday of one of my favorite aunt-in-laws.

July 8th secured its place in my affections one more time two weeks ago. On July 8, 2024, I got some big news. I finally received a diagnosis regarding my health! I was diagnosed with a condition that may be the root cause of my chronic health problems that started twenty-eight and a half years ago and that has kept me mostly housebound since 2008. That condition is Chronic Inflammatory Response Syndrome. (CIRS)

I’ve written about my illness from time to time in the Blog category From the Couch, but I’ll give a recap now. Since 1996, there have been multiple symptoms, but the most disabling has been chronic nerve pain that made my skin sensitive to normal touch and pressure. The pain can also flare up deeper without any outside stimulus. The problem started in my thighs and arms and then moved to my feet in 2002. Loose clothes helped, but for a long time, even hugs from our kids were painful. I couldn’t walk without pain, so a wheelchair was needed for anything longer than a short walk. And there were many days when even a few steps were too much. On those days, I had to navigate the stairs in our home on my hands and knees.

In 2008, the nerve pain in my thighs got worse. Nerve pain in my back came out too, limiting my sitting time to about twenty minutes. So now I couldn’t walk, sit, or lie down in certain positions without pain. I ended up having to lie face down on the couch during most of the day and have been mostly housebound ever since. Of course, this affected everything in my family’s lives. Thankfully, I was still able to homeschool from the couch, help my husband with his business in a limited capacity, and contribute in various other ways. But I missed a lot too. My post from 2020, Advice From Someone on “Lockdown” for Over 11 Years, covers some of that. Though I worked to make life as normal as possible for my family, it was still hard for them sometimes. I am extremely grateful that the Lord blessed me with a family who could lovingly endure.

Throughout this time, I saw many doctors, had lots of tests, and tried various medications, supplements, and other things to improve my health. A few things helped a little. Many things made the pain worse! Before now, the closest we ever got to a diagnosis was being told I had fibromyalgia. But I was also told by other doctors that “fibromyalgia” was a catch-all term that is used when they cannot figure out what is wrong.

My quality of life was greatly damaged. Thankfully, in 2012, my brilliant husband devised a schedule to allow my nervous system to acclimate to sitting up for more than twenty minutes. I added “up time” slowly. Eventually, I reached an hour before needing to return to the couch. As of late, I only need to go back to the couch three times a day. This change got me off the couch more and even allowed me to go out more, but the pain remained.

Another thing that helped was calamar therapy which I had back in 2017. I wrote about it on my blog here. It’s a treatment that uses electric current to help the brain rediscover “no-pain” signals, working with the neuroplasticity of the brain. That did give some relief, but it was not permanent. However, I was able to remember some of the things I learned during the treatments and apply them moving forward. That is part of why I was able to get used to sitting up more, but it wasn’t a cure.

In July of 2023, I began a therapeutic ketogenic diet program to see if it could help. Ketones are great for the brain. Since most of my chronic pain is nerve-related, it made sense to try keto. The keto diet did give some pain relief and helped with some other issues, but again, it wasn’t a cure.

Recently, even while ketogenic, nerve pain in my wrists came back. This means I’m back to using speech recognition software, which I used a lot in the early years of being couch-bound and off and on since. It is kind of impossible to type on a laptop when you have to lie face down to keep pressure off painful areas. Speech recognition software has been a huge blessing. I’m using it right now to write this while sitting up at my laptop as I nurse my wrists back. Sadly, this flare has also meant that working on my novel has slowed down again.

In the keto program, which also covered a lot of other aspects of health, I learned about various root causes for illness that should be considered if a therapeutic keto diet doesn’t get you where you want healing-wise. One of those root causes was CIRS. I started learning about it and did an online screening for it. That came out positive, so I located a CIRS specialist who ordered blood work. The order included CIRS related genetic testing. That also came back positive, and other test results showed black-and-white proof that there was something wrong. Finally! And they also pointed towards what it was! It was surreal and validating to have found some answers after so many dead ends. Praise God!

Here’s more good news. There is a treatment. Praise God again! It takes time, and won’t be easy, but there is hope for improvement. We’ve had a lot of disappointment when it comes to trying to figure out my health situation, so we are being cautiously optimistic – once again.

Treatment, which is multi-stepped, has just begun. We have been told to expect about two years for the full process, but improvement could occur along the way. Please pray for me and my family as we move forward with this. Because of the goodness of God, we do still have hope for better days. Please pray that I will be able to endure the treatment without any major complications, that I respond well to it, and that I see significant improvement. I hope and pray to not be beyond the reach of the treatment.

And please also pray that my wrists improve, so that I can get back to a “normal for me” speed of working on my novel. It is still in the rewriting and editing stages. I would love to finish it to God’s glory and to hopefully be a blessing to others. And of course, I look forward to being able to return to writing again here at Chapter 3 Ministries more often, if the Lord wills.

Below are a few links about CIRS in case anyone reading this would benefit by learning more. If you or someone you love suffers from a mysterious illness that no medical professional can diagnose, it might be worth looking into CIRS. If a diagnosis has been given, it might still be worth looking into as some diagnoses like fibromyalgia are not terribly helpful.

A FEW THOUGHTS ABOUT SUFFERING AND THE SOVEREIGNTY AND LOVINGKINDNESS OF GOD

While we are on the topic of suffering, I’d like to share a few thoughts. When it comes to the “why” about suffering and God’s will for healing, I have probably heard it all. Christians have said things like the following:

~ There’s healing in the atonement, just accept it like we accept Christ into our hearts for salvation.
~ You are already healed, your body just hasn’t caught up yet.
~ You just need more faith and then you will be healed.
~ God is teaching you a lesson, and then you will be healed.
~ It must be because of your sin. Repent and be healed.
~ Claim healing in Jesus’ name and cast out the spirit of sickness.
~ Don’t say certain words because words have the power to prolong sickness. Instead use positive words.
~ Get rid of generational curses and be healed.
~ Use this prayer cloth and be healed.

I have appreciated the compassion behind these sentiments. People often mean well, but they have picked up some unscriptural ideas about healing. On the flip side, when things like these are promoted, I don’t like it. I hurt for the people who believe them, and I do what I can to share what the Bible actually says and does not say about healing. It gives me joy to see someone’s eyes opened and find peace and encouragement from the truth in God’s word.

Due to the almost thirty years that I have suffered with chronic pain and because of my propensity to study God’s word in-depth, I have had plenty of time and opportunity to test the above sentiments and others by the Bible. If the ideas above that set forth a guarantee of healing or freedom from suffering were in the Bible, I would have found them. They are not there. What is there is the revelation of an all-powerful, holy, good, and sovereign God who provides great mercies, a God we can surely trust. He is our hope for today whether healing comes or not. And He is our hope for eternal life where believers will see all pain cease and all tears wiped away. (Revelation 21:4)

When someone holds unbiblical ideas about why they are suffering and remain unhealed, they suffer twice. They suffer from their disease or illness, for sure. But they also suffer from being separated from the truth about God and healing. They miss out on the strength and comfort that comes with knowing Him and His word correctly. Whenever we hold an unbiblical view about God, no matter the topic, we suffer loss.

A right view of God and a correct understanding of His word make suffering bearable for the saved believer. Actually, they make it more than bearable because He is awesome, and His word is life-giving. God does not change even when our circumstances do. He is still in control. He still loves us, and His compassions are new each morning. (Lamentations 3:22-23) And, one day, we will be with Him! (Revelation 21:3, 2 Corinthians 5:8) No purpose of His will be thwarted. (Job 42:2)

If you are suffering physically, emotionally, or in any other way, please take time to pour over the two articles below from Chapter 3 Ministries on the topics of suffering and the sovereignty of God. They are filled with Scripture that can speak to your heart. The verses in them still speak to my heart whenever I revisit them even though I wrote them! I have walked in long, deep valleys, too many to count, for so long. Thus, my ideas about God and suffering are not theory. I have lived it. I know what the Bible says about suffering and healing, and my hope is still in Him – because of Him. Please read the articles to understand how comfort and even joy are possible in the midst of suffering. We are not owed these things, but God still mercifully provides them.

I have long believed that God is sovereign and that He is filled with loving-kindness. And due to those biblical truths, I have developed an expression that has helped me through some tough times. It is “Who knows what God will yet do.” This is meant to look forward with biblical hope for displays of even more of His loving-kindness. Feel free to borrow it!

The truth is, we don’t know the future. We don’t know if or when He might change our circumstances. It could happen quickly or after twenty-eight and a half years. But we do know that we are not at the mercy of our circumstances. We are in the mercy of our great God.

Many people have it worse than me. You may be one of them. I am praying for you, and all my readers. Please don’t forget those around you who are suffering. Don’t forget the shut-ins in your life.

Thank you for reading and for your prayers. May God bless you all.

~ Sharon

THE PROMISED LINKS

CHRONIC INFLAMMATORY RESPONSE SYNDROME (CIRS)
Dr. Jordan B. Peterson interviews Dr. Scott McMahon and Dr. Ritchie Shoemaker about CIRS (Youtube) Long but informative. They discuss what CIRS is, how it is tested for, and how it is treated. They also talk about mold and how it can make people sick. Thankfully, my home does not appear to be the cause of my CIRS illness.
Understanding CIRS Nutrition with Judy
Online CIRS Screening and Symptom Assessment vcstest.com
What is chronic inflammatory response syndrome (CIRS)? MedicineNet

SUFFERING AND THE SOVEREIGNTY OF GOD
A Short Study on the Sovereignty of God  Chapter 3 Ministries
Suffering, Hope, and the Sovereignty of God  Chapter 3 Ministries

Here are a couple of books on these topics that have been a great source of help to me too.
Trusting God: Even When Life Hurts by Jerry Bridges
Walking Through Shadows: Finding Hope in a World of Pain by Ken Ham and Carl Wieland

Sharon Lareau

Founder of Chapter 3 Ministries. Ministering in the spirit of Titus 2:3-5 and encouraging women to contend for the faith. Wife, mom, and gigi! Homeschooler for 18 years. Mostly housebound since 2008 due to chronic pain illness that started in 1996. Diagnosed with CIRS in 2024. Trusting in a good and sovereign God.