But as for me, Lord, my prayer to you is for a time of favor. Psalm 69:13 CSB
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.
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.
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.
“I have been given this product, Legatto as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “ [Originally posted on 12-14-2017]
Fatigue, brain fog, muscle pain and soreness, weight gain, and depression are just a few of the “friends” of fibromyalgia pain that make passion seem like a word forever gone from our vocabulary.
I can’t blame all the problem on fibromyalgia pain, though that is certainly enough of an issue. I think that age and menopause have something to do with the problem as well. And due to a DVT (Deep Vein Thrombosis), I am not able to use hormone therapy to improve the situation.
My husband and I had become quite frustrated because of my lack of libido and the pain I was experiencing. The times that we did try to make love ended up being more like work than pleasure. There didn’t really seem to be much pleasure in it for either of us; though we desired greatly to show our affection to one another.
It started with tenderness around my elbow. I was a bit concerned because allergic reactions tend to start at the elbow for me. But I couldn’t figure out what was different in my life. About a week later, little blisters broke out, and then, oh the itching and pain! Y’all, you do not want to experience this. Did I somehow contact poison oak when they were removing trees from our backyard?
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
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…
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.
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.
I recently wrote about many of the things that cause bone loss. There are many causes from genes to medications to inactivity. I was surprised when I received the diagnosis. You might be too. So why not go to my first post and take the risk assessment quiz. Then come back and learn how you can work to prevent osteoporosis.
Usually, your doctor isn’t going to order a DEXA bone density scan until you are 65. Since I am on Medicare due to disability, I get all the notes that Medicare people get. A year or so ago, I saw a note asking, “Have you had a bone scan yet?” I ignored it because I was under 60. But this spring, I thought, “Why not ask?” And my rheumatologist jumped right on it to say “Yes, have your PCP order it this summer.”
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.