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. Come to learn it’s fibro pain. I’ll try to explain below.
You've never experienced pain? Well, let me tell you about it. #fibro Share on X
Dear Friend;
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 Share on X
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.
Mandy
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 on. What happened by the end? The message was completely different.
Our bodies have nerves 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 movie clip
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.
Amplified Fibro 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.
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 are 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.
Have More Questions About Fibromyalgia?
Letters to Friends ~ How Are You Doing Since Your Diagnosis?
Letters to Friends ~ Why Are You So Tired?
Letters to Friends – Where Does Fibro Pain Hurt?
What is Fibro Fog? Why are you Crashing?
What Were Your First Signs of Fibro?
Is There a Cure for Fibromyalgia?
SOURCES
Fibromyalgia National Coalition – Background informationMr Doctor dot Com – Pain and How You Sense it
Pastor’s Wife (retired) & Chronic Pain Warrior blogs about how to make it through anything by relating her own life experiences to her writing. She is passionate about her love for the Lord and desires to spread that passion to others. She has a great desire to encourage women who are following behind her.
You explained it very well.
It’s always hard for me to believe that some people do not have some kind of pain everyday, living with fibromyalgia.
P.S. Thanks for your contributions at Fibro Friday, I always like reading your letters.
I get it, I’ve actually had pain all my life just didn’t know that it was not normal. Can’t believe there are people who have never had pain. Glad you enjoy my letters. THanks for stopping in.
You’ve offered some great explanations of pain here Mandy. I’m always having to remind myself that there are people who don’t live with chronic pain since it’s been my normal for half my life. My Fibro pain is a deep aching throbbing pain that never goes away…so I get it!
Stay strong!
Oh wow! Sorry you have the throbbing. Mine does not throb. When I first experienced it, it was a contracting pain. horrible. But the drug, Savella has been my lifesaver!
Very good explanation. I will be using it to help my family understand my condition. The explanation that I give is to remember the last time they had the flu and the pain all over their body.. Then multiply that feeling and have it 24 hours a day, 365 days a year. Symptoms will vary day by day but it is always there. .I was diagnosed in 2004 just when the condition was finally getting attention. I had to educate the doctor that I had at the time. He was in the camp of not believing that Fibro was a real medical condition. By the time he retired he was pretty much believing that there may be something to this emerging illness. I now have a doctor that understands the illness because she has family members that are also living with Fibro. Keep up the good fight; I have found your site to be uplifting and informative.
I am thankful that doctors are now getting a better understanding of fibromyalgia as a disease. It sure makes it easier when the doctor understands. I have a wonderful team of doctors.
I was like you . I was in pain all my life but because I was a kid and it moved around they called it growing pains! Imagine that, well those growing pains worsened.
Knowing that it’s a real condition, ie being validated instead being mocked or told it doesn’t exist is something even if the condition itself is untreatable incurable.
Yes! having a diagnosis is comforting in itself. I am thankful that at least my family has believed me and supported me. Some don’t even have that. Thanks for coming by.
Hello Mandy.
I have had Fibromyalgia since 2010 and since that time it has affected my mobility and changed my body. I constantly forget things and have short term memory loss. I’ve also got arthritis and rheumatoid arthritis and type 2 diabetes. I came up with an idea last year especially with all of the Covid situation. In my diary on the first blank page I have written down a list of all my diagnosed problems starting with fibro. I also have noted the meds I take. This has saved me so much time when I’m at the hospital and other appointments. They ask me what problems I have, I open my handbag, pick up my diary, open the page and bingo it’s all there. Half the time if I had to rely on my brain to remember everything is definitely forget. My husband is my full time carer and our daughter is registered as a young carer. It’s taken me a long time to fully accept all the changes to my body. Before becoming ill I’d walk everywhere or get the bus or train. Now I can no longer walk and use a wheelchair. I struggled with my faith at the beginning of all of this and would question why I was the way I was. I’ve realised since (thankfully) that God has a plan for me. What that plan is has been taking on a voluntary role at church. It’s great and we belong to a really wonderful congregation where we all get on. Your website is very informative and I’d like to say thank you for all the hard work you’ve done with it. Fibromyalgia isn’t easy to live with. I also have M.E. which affects me hugely but my faith and my family gets me through every single day. I spend time with God every morning and although there is no cure I just try and live as normally as possible.
I remember when I was in the early stages of being diagnosed and I decided to have a bath. I got in and my fingers sizzled in the water like electricity would. I needed the cold water putting in so I said to my husband, “Can you put the thingy on, you know the silver thingy. You turn it on and water comes out of it”. He replied, “Oh, you mean the tap?” Yes I meant the tap. Little things like that happen daily around here and now we just laugh at all my mumisims as the kids call it. Praying for you xoxo 😘💖🙏 xxxx
Oh Kimberley, thank you for sharing your story with me. I am so glad that you are encouraged by my blog. I would love to feature your story on the blog. I have a set of questions that I send to those who are willing. You can answer them as you are able and then return the file to me. Would you be willing to do this? send me an email at mandy@mandyandmichele.com