Tag: Fibromyalgia

“What Happened to your Faith? I seldom see you at Church.”

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It’s easy as a church member to become judgmental when someone begins missing church too often. But many times there is good reason for their absence.

I’d love for you to read Shona Smith’s letter below. I met Shona through a mutual blogger who featured her a few weeks ago. Read Out of Sight, Out of Mind

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Dear friend from church and /or confused family member,

Do you know what I would love to be doing right now?

Dreams

  • I would love to be dancing in God’s presence and singing at the top of my voice as I lead others into His presence.
  • Or be racing out the door with the kid’s work and playing energetic games with them. And then having a deep satisfying discussion about the things of God and praying with them.
  • I would love to have gotten up early this morning. Spent hours in preparation for some delicious food in order to invite some random church people back for fellowship and an afternoon chatting and relaxing in the garden.
  • Oh, to be offering to have a friend’s children for her, even overnight, to give her and her husband some quality downtime.
  •  What would it be like to have a pristine house where food could drop on the floor and not have to be immediately thrown away?
  • I’d love to be baking cakes to invite you round to share with me…and for us to while away a couple of hours chatting about nothing in particular but feeling encouraged and refreshed afterward.
  • I would love to spontaneously drop in on our grandchildren and whisk them away for dinner with us.

BUT THIS IS NOT MY REALITY AND IT WON’T BE UNLESS I RECEIVE A MIRACLE!

What I'd Like to be Doing ... But this is not my reality and it Won't be unless I Receive a Miracle. #thisisfibro #chronicpain Click To Tweet

Reality

I’ve spent the last few years trying to find a new reality in the midst of

Managing fibro pain

Photo credit: National Lupus and Fibro Association

an illness that means some days I cannot find the energy to get dressed, let alone shower. My condition means that the thought of holding a short but deep conversation with one other person in the quiet of my home can fill me with horror because I know it might cost me all of that day’s energy. Every decision I take, every action I make has huge implications for the rest of my day or even my week. (See Mandy’s link on the subject)

On my very bad days, I cannot manage to stay upright, talking or reading or even watching TV and rely on others to bring me a drink and food in bed without talking to me.

On my best of days, I have to make careful decisions all day long about everything which will use my energy: showering, cooking, Facetime with my mum, reading, shopping, housework, conversation with my husband and family: everything costs and if I “overpay” the “interest rates” in payback can leave me bed-bound again for days or sometimes weeks.

 

Church Reality

When I make it to church it has been a really good week. There has been resting for at least one day before it and there will be resting for the remainder of Sunday and most of Monday. I often cannot manage to socialize or stay for a whole service as sitting upright, singing, loud noise, lots of people, chatting are all activities which use a lot of energy. If I have made it to church to join in, I often don’t have the energy to stay and socialize so I have to choose how long I will be there.

This is not the challenging bit…

Sometimes I am feeling quite strong and well so I stay out for a bit longer, chat away with people. I pray out loud in the service. Stand and chat over drinks after.

And all the while I feel fine BUT the next day or two days later I am unable to get out of bed or shower or talk and that may last for up to a week. It’s called PEM – Post Exertional Malaise – and it just comes on after any increase in my limited activity. I can stand for longer than usual, be squat down at some task for a few minutes, spend longer than usual cooking or stirring something and then two days later.

It’s like I’ve been pushing it too hard at the gym …it’s the equivalent lactic acid build up… my body prefers anaerobic production of energy to the muscles… and pain causes a “short circuit” so my batteries won’t recharge at all when I am in a lot of pain. It would take too long to explain it all but you can read some more about the challenges of attending church in my leaflet, “Christians with Chronic Illness“.

How’s my Faith?

So, what’s happened to my faith, the “doing, loving, running things, lots of ideas and activities, dancing, exuberant praising faith”?

My faith is still here. It’s kept me alive; it’s allowed me to hope that one day there will be more to my life again, it’s battled through dark lonely days of pain and crushing fatigue and feeling worthless. My faith has allowed me to find purpose in praying for and encouraging others. My faith has become something I am much more than something I do. (Mandy’s faith with Fibro)

What's Happened to my Faith? It's Still Here. It's keeping me Alive. Click To Tweet

When I Can’t Do What I Want

When I am frustrated by wanting to do something to love others but simply not having the energy to do it, my pastor recently encouraged me to tell them what was on my heart, even when it isn’t possible, because it encouraged him to know I had thought of the act of love or kindness. I was so encouraged by that word…someone seeing my heart and being encouraged by my desires even when I couldn’t carry through!

My faith has allowed me to celebrate the small things. The days when I can stand up long enough to make a meal or join in with a song at church; the days when I can drive to do our grocery shopping; the moments when I can have conversations at church and make friends; the moment when I was able to join in with a game with my grandsons. Despite the fatigue, sleep doesn’t come easily, so I often pray in the night over family and friends and whatever is on my mind… precious still moments with God when I hear His heartbeat and know I am partnering with him in the stillness.

Not all Roses!

My faith has also been battered. Why does God put so many ideas and thoughts in my heart when I don’t have the capacity to do any of them? Why did He give me gifts in teaching and leading and planning when my brain is now so often in a fog and I can be sat watching TV for hours and not even take anything in? I have no idea BUT I am learning to trust Him that He continues to have “good works which He has prepared in advance for (me) to do.” (Ephesians 2:10)  (See Mandy’s letter, If God is my Healer, Why am I still Sick)

What has happened to my faith?

I’ve been on a wilderness journey and been through all the emotions of grief for my old life, the shouting angry hopeless flailing that just “gets it all out there” and I am finally finding a stillness and a glimmer of hope that God knows exactly what He is doing and He has a plan… and I just want to do His will!

Wishing to be with you,

Shona Smith

Free Download

Download Shona’s helpful flyer for more ideas on How the Church Can Help The Chronically Ill.

Tune in for Shona’s interview on Premier Radio Woman to Woman on 22 May, at 11am GMT (http://www.premierchristianradio.com/radioplayer

More information about How to Help the Chronically Ill

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explain the pain

Explaining What Fibro Pain is Like

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Can you describe the pain

I’ve never really experienced pain. What is it like?

For me, it’s hard to imagine what NO PAIN is like. I have had pain most of my life. Some of it, I thought was just normal for everyone.. until I was diagnosed. I’ll try to explain below.

You've never experienced pain? Well, let me tell you about it. #fibro Click To Tweet
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Dear Friend;

fibromyalgia is real
This post was updated and moved from Mandy previous webpage www.ggmandy.com

To really understand what is happening with Fibromyalgia, we need to understand how pain works. We have an amazing body. The whole system of how messages are sent through our body to the brain is remarkable to me. We have thousands, maybe millions of little tiny nerve endings that speak to each other and pass the message along. It’s mind-boggling how it works. But it’s a safety mechanism of sorts.

Each tiny nerve has a receptor on the end which “talks” to the connecting nerve receptor These messages move along the nerves until they reach the brain. Then the brain returns a message to tell your muscles how to handle it. It does this all with lightning quick speed. Think about if you were to touch a hot stove, your hand quickly pulls away. You don’t have to think about it. You don’t have to do anything, your body just responds. And this is wonderful.

Fibromyalgia nerve receptors send the wrong message. #fibro Click To Tweet


However, with fibromyalgia, the nerve receptors are sending the wrong message.

Reminder:  I am a patient, not a doctor. What I am sharing comes largely from what my doctors taught me and what I have discovered in my own searching.

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.

phone game
Telephone Game – photo credit free at Pixabay.com

Remember when you were a kid and you played the telephone game? One would whisper a message to one person, then he whispers to the next one, and she whispers to the next, and so one. What happened by the end? The message was completely different.

Our bodies have nerve all over. Each nerve has a receptor on each end. These receptors pass the information along to the brain. Then the brain sends back a message on how to respond. Such as,

  • “No danger move on”
  • “That hurt a little”
  • “Good grief that hurt” Rub that spot a bit.
  • “severe pain” double over and scream
  • “You are in grave danger” “run, move quickly away”

This is how fibro pain works.

The nerve receptors are passing the message along, but then one receptor changes it up. And what was a small prick is now amplified.  Like the dial on your radio, the more you turn it up, the louder it becomes. By the time the message arrives at the brain, it is telling the brain, “This is a severe situation”. So the brain responds in kind and sends the message back that something must change to stop the pain. But the receptors keep sending that PAIN message back to the brain.

Here’s an example we were given at Mayo Pain Clinic. When you put your socks on in the morning, at first you can feel your sock, but your brain says this is ok, not a problem. And after that, you are hardly aware that you have socks on. However, with fibromyalgia, the brain keeps sending the DANGER message. “There’s a sock on your foot!” “There’s a sock on your foot”

www.mayoclinic.org
Reminds me of this from Disney’s Monster’s Inc movie

With fibro pain, the message may just keep coming back as “DANGER” or the message is greatly amplified. [The pain can be multiplied by up to 200 times]. The brain receives the amplified message and responds accordingly.

This is why just a touch, a poke, or a hug can be so painful.

photo credit for all photos: Fibromyalgia and Lupus National Coalition Butterflies
#fibromyalgia pain can be multiplied, or turned up, 200 times the actual pain. Click To Tweet

Amplified Pain

This amplified sensation can affect not just the sense of feeling but also your sense of hearing, smelling, and taste. For myself, I have become less tolerant of noise, such as a roomful of children, or even a vacuüm cleaner running. And lately, I’ve even noticed that spicy food is spicier than usual. I recently wrote about some of the things I can no longer do in another post. Check out this diagram to see all the areas that can be affected by this amplified pain.

photo credit
photo credit for all photos: FibroColors on Facebook

I hope this explains the pain for you. What’s really strange is that you never really know from day to day how the pain will be. Some days a quite normal. Others, not so much. Also, it depends on the person how much pain is involved. Different people respond differently to protocols for maintenance. Some are helped with medications, some with exercise, therapy, diet, etc. It’s all still pretty much a crapshoot.

Watch for more “letters” from me and my friends to learn more about this crazy invisible disease.

Mandy Farmer
Fibromyalgia Awareness Day

SOURCES


Fibromyalgia National Coalition  – Background information

Mr Doctor dot Com  – Pain and How You Sense it

volunteering with fibro

Volunteer with Disabilities like Fibromyalgia & Chronic Pain

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Question about Disability

Can you volunteer your time while being on disabilities like fibromyalgia and chronic pain?

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Letters to Friends, Volunteering
image credit: free @ canva modified by Mandy

Hello, My Friends,

I wanted to share with you what it’s like to live with Fibromyalgia, yet still, be able to volunteer. I wasn’t sure that I would be able to volunteer with a disability when I first went on disability from work, because I was bedridden for a long time due to pain and fatigue.

Over a period of several years though, my treatments of medication and gentle exercise, etc. began to work and I found myself feeling well enough that I knew I wanted to give back to the community again. I just needed to
find the right way to do it, so that I wasn’t overwhelming myself too much.

Over the years my chronic pain was managed and stable. #volunteering #disability Click To Tweet

Great Volunteer Organizations

I found a great organization in my home province of BC called Patient Voices Network. They give everyday ordinary people the opportunity to have a say in how health care is delivered in the Province by allowing us to be Patient Advocates when Health Care Organizations are looking for the Patient Voice in their engagements.

  • This can be done in many different ways –
  • being part of focus groups,
  • surveys,
  • committees or
  • councils and so much more.


After becoming a member of PVN, I immediately jumped in by becoming involved in a committee that was working to improve surgical outcomes for patients with colorectal cancer. I helped to develop a DVD that all patients would receive along with a booklet outlining what to expect as they started treatment, right from the moment of diagnosis all the way to follow up
after surgery. Since then, I’ve been invited to several forums, I’ve participated in some surveys and focus groups and I currently sit on 4 different committees, one virtual reality testing group and one Provincial Survey Measurement Working Group.

Doing Too Much with Chronic Pain

Everyone says “oh, you do so much”, but my actual time commitment is really not that much. One committee meets quarterly, one meets bi-monthly, and for some of them, I don’t even have to travel as I can join them online. I do travel to Vancouver from my home in Langford for 2 of
the groups, but my expenses are all covered, and it’s fun to meet with my teammates in person.


I get such a great sense of satisfaction being able to give back to the community in this way. I know I’m making a difference to others with the work I’m doing, and because I’m able to pick and choose what I want to commit to, I am able to maintain my own health at the same time. I have plenty of time to rest so my Fibromyalgia stays under control, and if I’m not feeling well for some reason, I can always call into the meetings that I normally attend in person.

I highly recommend looking into Volunteer work for anyone with Fibromyalgia as there are many ways you can assist others while still taking care of you. Find something you are passionate about, and see if you can make it a part of your life. It helps get you out of the house, keeps you active and involved and helps others at the same time.

I hope you find it as enjoyable as I do.


From my heart,
Pamela

volunteer with disability, fibromyalgia, chronic pain
image credit Canva. Modified by Mandy

Thank you, Pam, for sharing with us about volunteering. This is a wonderful way to get out and do something for others.

What About You, Readers?

How are you get out and doing for others? What volunteer organizations do you recommend? Share in the comments below.

If you are in the USA, I found this website that gives a lengthy list of Volunteer organizations with which you may be able to get involved.

restorative rest

Ten Steps to a Restorative Rest

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You Seem Tired A Lot. How Well Are You Sleeping?

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Fibromyalgia and Fatigue go hand in hand.

I struggle nearly every night just trying to get to sleep. I can sit in a chair all evening yawning and nodding off. But get into the bed, and the eyes pop wide open. This leads to my mind begins to wander and I start to think about all kinds of things that keep me awake. The next day, I can barely function.

As a matter of fact, fatigue is the second most common symptom for fibromyalgia sufferers. Many times those diagnosed with fibromyalgia will also be diagnosed with chronic fatigue syndrome.

Therefore, it is vitally important to get that restorative rest as much as you can.

As a sufferer myself, I respond along with you, “Yeah, right!”

Steps to Restorative Rest

So what can we do?

Continue reading →
fibromyalgia symptoms

SYMPTOMS TO LOOK FOR WHEN YOU SUSPECT FIBROMYALGIA

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Q: What Other Fibromyalgia Symptoms do you have besides the Pain?

Fibromyalgia divider


Reminder :  I am a patient, not a doctor. What I am sharing comes largely from what my doctors taught me and some of what is discovered in my own research.
The purpose of this series is to inform. I pray you will 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.

There are so many fibromyalgia symptoms and they can come and go. Look for these and others, especially when they come in multiples.

According to Patient Education Booklet from Mayo Clinic ” Fibromyalgia: The Road to Wellness”, symptoms of fibromyalgia include:

  • Widespread pain
  • Fatigue
  • Sleep difficulties
  • Mood Disorders
  • Difficulty with memory, concentration, or thought organization (sometimes called “Fibro Fog“)
  • Headaches, facial pain
  • Chest wall pain
  • Heightened sensitivity to odors, noises, bright lights and touch.
  • Stiffness
  • Numbness or tingling in the arms and legs
  • Dizziness

One may or may not experience all these symptoms. And some may come and go, even the pain. This makes it difficult to diagnose, along with the fact that there is no blood test or x-ray that can be done to find the problem. When these tests are done, everything comes back normal which is why many doctors are baffled or believe that it is psychosomatic.

Conditions that may accompany fibromyalgia

Continue reading →

What is Fibro

What is Fibromyalgia?

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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. Pain management will be necessary to have a portion of your old self.

One can live a long and "normal" life because fibromyalgia can be managed. Click To Tweet

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.

Continue reading →
fIBROMYALGIA REALLY FOR REAL

Why Fibromyalgia is a Real Pain?

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qUESTION – iS fIBROMYALGIA rEALLY FOR rEAL?

Dear Friend OF A fIBRO wARRIOR;

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. Continue reading →

baking cookies with fibro

Baking Cookies with Fibromyalgia .. or Not

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Dear Sis,

Can you believe I only baked one batch of Christmas cookies this year? I Cut-out cookiesused to make double batches of 5 or 6 different kinds of cookies. Remember how we used to gather with our cousins and bake cookies all day after Thanksgiving? We must have made a thousand cookies back then. But it is nearly impossible for me anymore. First of all, it’s only me around here now. My husband, bless his heart, is trying to convince me that I should just quit baking cookies but it really breaks my heart to stop. 🙁  He’s probably right ’cause he usually is. Continue reading →

I can not do

Simple Things I No Longer Do With Fibromyalgia

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Dear friends;

If you been around since my diagnosis of fibromyalgia, I’m sure you realize that I am not the same as I used to be. I’m guessing you have noticed that I am no longer the go-getter I used to be and no longer deeply involved with the children at church, as a matter of fact, I’m not even at church every time the doors open. I walk with a cane and tire very easily. At home, I have to leave a lot of the daily chores to my husband. This is all much to my disappointment but it just cannot be helped.

Simple Things I No Longer Do

Today, though, I thought I might share about some of the simple things you may not realize that I can no longer do since my diagnosis. Here are some of those simple things that most of us take quite for granted.

Wear a hat or pretty barrettes in my hair.

Anything that might pull my hair or put pressure on my head causes a lot of pain for me now. Have you ever put your hair in a tight ponytail and then later when you took it down you scalp hurt? This is me all the time. Some days are not as bad as others, but for the most part, anything in my hair or on my head is a no-no.

Open a bottle of water or coke.

bottle cap simple things

Photo Credit: Hans at Pixabay

“Can you open this, please?

Those little ridges on the bottle cap are little needles poking into my hand when I try to open a bottle, especially the first time breaking the seal.

Walk across the floor in my bare feet.

Walking in my bare feet, at times is like walking on a bed of nails. Or worse, little a bed of needles. Can’t wear the socks with slip grids on them either. Each grid causes great pressure or pain on my feet. Lately even the fuzzy socks have been an issue. They feel like walking on a dirty kitchen floor in your bare feet. I had a pair of sandals once with ridges inside the soles. Oh, my, It was just impossible to walk in them.

Don’t mean to overwhelm you. Just trying to help you understand why I no longer do things I used to do. I hate it really cause my brain says, “Hey, let’s do this” but my body says, “NO!” My mind knows these are simple things to do, but no longer for me.

Thanks for listening and understanding,

Mandy Farmer

 

I’m a Member of Fibro Bloggers Directory

Pain for the holidays

Pain Comes for the Holidays

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Ah, Friend, Happy Holidays!

So here we are again at the holiday season. I have always loved so much about the holiday season. I  love the cooler weather, the baking, the planning of parties and Christmas decorating and caroling. But most of that is no longer true for me. All these things seem to be an invite for Pain to enter my life and hold me hostage during the holidays. Continue reading →