Follow along and learn about my first signs of fibro myalgia. It started long before I realized it.
originally posted on March 12, 2018
Dear Family and Friends;
Thanks for checking on me the other day. You asked about my first signs of Fibro. As you know, I acquired disembarkment disorder after our cruise to the Bahamas in February 2011 (which has never gone away), followed by neck pain, and then I was hit suddenly with extreme, contracting back pain in September that year.
Earlier First Signs of Fibro
But as I have learned more about Fibromyalgia, it seems there have been several signs of it from early in my life.
Do you remember all those chest pains I had in middle school and high school?
They could never find anything wrong so they called it growing pains. Ha! If that were so I’d be about 6 feet tall! Anyway, it turns out that many of us fibro warriors have experienced “growing pains” at puberty. So my first signs of fibro were probably chest pains at 11 or 12 years of age.
Always Just So Darn Tired
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It has also dawned on me that one major symptom of fibromyalgia is fatigue, tired for no particular reason. You know, I have always been tired. I get so tired from a shopping trip or band event. I would fall into a deep sleep immediately after arriving home from any kind of event. Really, I would fall asleep as soon as I got still.
I would sleep the entire way! When they finally realized I had thyroid issues, I thought that was the answer. And while the medication does keep everything stable, I still feel like there are more issues than what is being addressed.
All My Life Signs of Fibro
So evidently, I have had fibromyalgia nearly all my life. It’s just that the cruise somehow awakened the monster.
Thanks so much for taking an interest in my life. I know you feel that your hands are tied because you live so far away, but believe me, your frustration would be the same if you lived next door. Your prayers and calls mean so much to me. It would certainly be nice though if we were closer. Then at least you could come to visit. But I would miss that even if I weren’t ill.
This scripture jumped out at me since I can totally relate. Pain most of the time. And we live only on Social Security. Thank God for Medicare and Medicaid or we could not make it. Especially with inflation the way it is. This portion of Psalm 69 needed little change to apply to my life.
This is a paraphrase from Psalm 69, continued. [First part here] David had many times in his life when he felt he was drowning in troubles. This scripture jumped out at me as I read “poor and in pain”. I can relate to both of these entirely. When I read this psalm of David I can feel my own soul praying this prayer with just a few changed words. As you read it, you may understand some of the things that chronic illness causes in our lives. My words are in [ ]. Highlighted words link to another post I have written concerning the issue.
Mandy’s Psalm continued…
Answer me, Lord,
for your faithful love is good. In keeping with your abundant compassion, turn to me. 17 Don’t hide your face from your servant for I am in distress. Answer me quickly! 18 Come near to me and redeem me; ransom me because of my enemies.
You know my pain
19 You know the [pain] insults I endure— my shame [flares] and disgrace [fatigue]. You are aware of all my adversaries [invaders of my health]. 20 Insults [Unable to serve as I once did] have broken my heart, and I am in despair. I waited for sympathy, but there was none; for comforters, but found no one. [They came at first, but now, no one]. 21 Instead, they gave me gall for my food, and for my thirst they gave me vinegar to drink. [They say I don’t look sick and that I am making it up. This tastes like vinegar to me.]
Repay Them For What They Do
[ I’m a bit shocked when I read words like these from David, I am more inclined to ask God to open their eyes and understand my plight.]
22 Let their table set before them be a snare, and let it be a trap for their allies. 23 Let their eyes grow too dim to see and let their hips continually quake. 24 Pour out your rage on them and let your burning anger overtake them. 25 Make their fortification desolate; may no one live in their tents! 26 For they persecute the one you struck and talk about the pain of those you wounded. 27 Charge them with crime on top of crime; do not let them share in your righteousness. 28 Let them be erased from the book of life and not be recorded with the righteous.
Prayer for Protection
29 But as for me—poor and in pain— let your salvation protect me, God. 30 I will praise God’s name with song and exalt him with thanksgiving. 31 That will please the Lord more than an ox, more than a bull with horns and hooves. 32 The humble will see it and rejoice. You who seek God, take heart! 33 For the Lord listens to the needy and does not despise his own who are prisoners.
Let God Be Praised for His Protection
34 Let heaven and earth praise him, the seas and everything that moves in them, 35 for God will save Zion and build up the cities of Judah. They will live there and possess it. 36 The descendants of his servants will inherit it, and those who love his name will live in it.
But as for me, Lord, my prayer to you is for a time of favor. Psalm 69:13 CSB
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This is a paraphrase from Psalm 69. David had many times in his life when he felt he was drowning in troubles. People who suffer from chronic pain can often feel they are drowning in pain and sorrow. When I read this psalm of David I can feel my own soul praying this prayer with just a few changed words. As you read it, you may understand some of the things that chronic illness causes in our lives. My words are in [ ]. Highlighted words link to another post I have written concerning the issue.
Unimaginable to me, but there are people who can’t relate to dealing with pain. There are folks out there that have never had as much as a headache in their life. This is unimaginable to me.
I’m NOT one of them.
I have dealt with pain from a very early age. In the 5th grade, I started having chest pains, severe pains, like having a heart attack pains. But by the time I got to a doctor or the ER, the pain was gone or they couldn’t find the source of it. They said it was “growing pains“. Funny, I never got taller than 5’2”. Sure had a lot of pain to end up so short.
When we receive severe diagnoses, it can shake us to the depths of our souls. And many times, we don’t hear anything the doctor says after that. The last thing you need to do is sit down and give up. Let’s review a few things our doctors may or may not have expressed to you at that initial appointment. These are some things I neglected to do and have learned the hard way about it.
Welcome to Letters to Friends where fibro warriors explain the pain. If you have other questions, we may have answered them here or you can comment below with your questions and we’ll answer!
Fibromyalgia is not a death sentence.
Fibro is not a terminal disease. You can live a full life and have fibromyalgia. Your life may not be the same as before and pain management will be necessary to have a portion of your old self.
Reminder: I just want to say that I am a patient, not a doctor. What I am sharing comes largely from what my doctors have taught me and what I have discovered in my own research.
I am sharing to hopefully help you be informed enough to support friends with this syndrome or possibly acquire informed questions for your doctor. Please talk with your doctor or visit the Mayo Clinic website for official information, diagnosis, and treatment.
I noticed that it was National Sleep Day or something and it’s common knowledge that Fibro warriors have trouble sleeping. So I thought I would share some information from different fibro warriors that have written something. My friend Glenna Norton recently purchased a My Pillow mattress topper. She was raving about how her sleep has improved so I asked her to write a review. Her review is here and then you will find some other fibro warrior’s blog post about sleep.
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Fibromyalgia? Have trouble sleeping?
So do I, or should I say did I! About a month ago, I went to eat breakfast with a good friend from church. She told me how, for years, she had trouble sleeping until she ordered a MyPillow 3-inch mattress topper, and boy was it a game changer! She has slept like a baby since ordering it two years ago.
No More Couch Sleeping
In turn, I told her I had a lot of trouble sleeping, too, mainly due to Fibromyalgia. I spend at least half my time sleeping on the couch so I decided to give MyPillow a try. I love their pillows, have had them for years! Love that you can wash and dry them! And a 10-year guarantee is a great selling point!
I ordered the MyPillow mattress topper and a set of the Giza sheets. They came sooner than expected. I have had GREAT sleep for over two weeks now! All in my bed, no more couch sleeping!! The sheets are soothing to my skin, as well!
Guess now, I’ll order us all a pair of the house shoes! Woohoo! Glenna
Information about the MyPillow mattress topper:
They consist of three unique layers: 1) contains patented foam for support and durability; 2) has transitional foam for comfort, weight distribution and relieves pressure points, 3) a removable zipper cover that’s machine washable and dryable, which consists of straps to hold in place. This is made in the USA, has a 60-day guarantee and a 10-year warranty! Plus, it’s a lot cheaper than buying a new mattress!! I highly recommend this product to anyone suffering from Fibromyalgia! It is definitely a game-changer!!
P.S. Order straight from My PIllow for better discounts!
And Now From Some Fibro Bloggers
Get Your Weekly dose of Sleep Info every Sunday
Bar McLullich from the UK writes about sleep nearly every Sunday on her blog, Back Pain Blog.
If you are in chronic pain, the last thing you want is to not get a good night’s sleep. I have suffered from more pain and chronic fatigue due to my sleepless nights and I have tried a myriad of different things to help me get a better night’s sleep.
Melissa Reynolds at MelissaVSFibromyalgia has done a lot of research on sleep and fibromyalgia. She has created a workbook that you may find helpful.
The paradox of chronic insomnia and chronic fatigue is a mean one. How can I be so exhausted deep down in my bones, yet still not able to sleep? – every fibromyalgia fighter ever. Sleep research, sleep hygiene, sleep tips, and all the things I have been learning about combating chronic insomnia and fibromyalgia.
Melissa offers video posts on her site. You may find that more helpful than reading through information.
Some Deeper Research & the Fibro Blogger Directory
Lee Good at Fibro Files has written several times about sleep as well. Her posts are more in-depth research which will give you lots of information on what is being studied. I was interested in this article about vibrotactile stimulation. I had not heard of it before.
Lee also offers a place for all Fibro Bloggers to share their information on anything about fibromyalgia. That post comes out every Friday. You might want to look into that.
Michele here on the blog has been talking about the Science of Eating this year. Her posts will wake you up to some of the eating problems in our society.
I recently found this video by a health coach, Joe Reed, at Train Outta Pain. Again, I have never heard of Circadian Rhythm, but this sounds logical. He says that food, sleep, and brain fog may all be related. He is on Facebook. Circadian Rhythm Matters.
REALLY! THIS IS THE LAST ONE!
Cynthia at My Inspired Fibro Life has some great things that may help your get your ZZZZ’s.
For those of us that suffer from the effects of chronic pain, it is often difficult to get going in the morning. I am often tempted to lay in the bed and let the day pass me by. But I am learning how to get my day started on the right foot. Let me share 5 steps toward beginning a great day. I preface this to say that I totally understand that some days are worse than others and I only encourage you to try.
S – T – R – E – T – C – H and B – R – E – A – T – H – E
I am thankful for a good stretch. When I first was dealt this terrible pain, I could not move, up or down, roll over, sit up, you name it. Any movement at all caused a debilitating contraction of pain across my lower back. So there was no stretching going on here. But now that I have learned to manage my pain, I am grateful for every stretch. I do several stretches right from the bed and others throughout the day. Identify your points of pain and look up some gentle stretches that will help release stiffness. If you ignore this, you may end up completely tight and unable to move. Here’s a place to start…
This begins right where we left off. I’m not much of a Yoga fan, but I do take in some good deep breaths every morning. I spend some time listing things that I am grateful for. You may be in a lot of pain or there may be a lot of problems in your life, but there is always something we can be grateful for. Get a small notebook and start a gratitude list. Then if you have a particularly bad morning, you can go back and remind yourself of all the good things in your life.
I then spend a little time reading and meditating on the Holy Scriptures. I start with Proverbs. There are 31 chapters. One for every day of the month. You might relate to how things haven’t changed much over the centuries. Secondly, I turn to the Psalms. It was suggested to me once that I should read a Psalm every day. Honestly, it’s a great idea. I am always encouraged because they often start out with the trouble and the psalmist will end up praising God. Now that is a great way to get the day going!
[Actually, now I’m reading 5 Psalms. It only takes a few moments. I start with the day of the month. ie today is the 16th, so I read Psalm 16. Then I add 30 and read Psalm 46, then 76, then 106, then 136. This seems to add some variety to the reading. The only time I switch it up is that I save Psalm 119 for the 31st day of the month. This Psalm is long, so I give it its own day.]
There are plenty of great apps available for this time of reading if you prefer something else.
First Five – an awesome app offered by Proverbs 31. As it indicates, It only takes 5 minutes to read.
BGEA – You can’t go wrong with Billy Graham’s devotions!
Get started with your hydration goal by downing 2 8-ounce glasses of water right off the bat. I take my medications with the first one with apple cider vinegar; the second, with your medications. Why Apple Cider Vinegar? Because it has so many benefits including:
Start small with the vinegar, maybe just a capful. Add a squeeze of lemon juice or even a bit of liquid stevia if you can’t deal with the taste. It is definitely an acquired taste. And do this first before your glass of clear water so that you rinse the acid from your teeth.
MAKE YOUR BED
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Seriously, take a couple of minutes and make your bed. It will help you sleep better at night and you will be more rested tomorrow. It adds to your stretching routine as well. Another note: When it the last time you wash your bedsheets? Once a week is advised to remove germs and dirt.
BREAK A SWEAT
It only takes ten minutes to get your heart rate up and challenged. Dr. Livinggood [yep, his real name], suggests ten minutes of Tabata. This is a high-intensity exercise, but high-intensity is relative. You do what you can do. Great for your heart! Here are the videos I use to help me get going without going to the gym…
As if the pain of fibromyalgia isn’t enough, the effect of said pain can wreak havoc on our personal lives. You see, it’s not just pain like a headache or even a broken bone. This pain is constant with no hope of ending. And to make matters worse the pain does not walk alone. It has “friends” that tag along as well. Fatigue, brain fog, muscle pain and soreness, weight gain, and depression are just a few of the “friends” of fibromyalgia pain.
But today I want to go where few dare to go and that is, the lack of libido leading to a strained relationship with your spouse. This is not just a problem for you the fibro warrior but probably, even more, an issue for your spouse.
Now before you stop reading because you don’t have fibromyalgia,
Life interruptions don’t have to end your purpose in life. Here’s my life interruption story of chronic pain from fibromyalgia and rheumatoid arthritis. This piece was originally written in 2017. Follow [Mandy’s Journey with Chronic Pain] at this link.
Life’s Interruption … New Year’s Eve 1989.
Wedding Day December 31, 1989
This was the day we were married. God had done an amazing thing to bring us together. (Read this story here). Just suffice it to say that I went from being a single girl, on her own, programming computers to a pastor’s wife and a mom of two boys, 9 and 14! What a change!
But that is not the interruption I want to share about today.
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