This series is written in letter form explaining different aspects of Fibromyalgia. It begins with a question others might ask and then answers the question as best as we can. Letters are written by many guest writers and Mandy as well.
By now you have heard about fibromyalgia, but maybe you don’t understand much about it or the effects it has on the patient. I have been writing about fibromyalgia for about 5 years now in the hope that I can explain it to you. Other pain warriors have also offered to “write letters” to answer specific questions.
Today, I introduce to you, Sue Ingebretson. She is a fellow pain warrior and best-selling author. She has offered to share with us an open letter she wrote a few years ago. We are offering part of this letter in print here but also offering the full letter as a downloadable, printable that you may more easily share with others or have handy for helping your friends with fibro. So without further ado, here’s Sue Ingebretson…
You’ve recently asked me about fibromyalgia and I’m sure you’re wondering what all the hype is about. While most people have heard of it by now, that doesn’t mean they know what it is. There’s a lot of conflicting information out there and it can be confusing.
After all, if everything you know about fibromyalgia comes from what you see on TV, you might believe I should be out rowing a canoe, gardening, or opening my own bakery and sweets shop. But, instead, you may see me not feeling well and not participating in activities that are too taxing or stressful.
To clarify my response to you, I’m providing it in this written format. It’s my way of making sure I don’t leave out anything important. Click below to open the letter in its entirety or read a portion below.
Letter to Friends about Fibromyalgia ~ Click Arrow Above
An Excerpt to Understand Fibromyalgia
One of the hardest lessons I’ve had to learn is how to express myself. Although it’s difficult, here are a few thoughts on that topic:
Please don’t ….
– Tell me that you know how I feel. Even if you have fibromyalgia and/or any other health challenge, we’re all different and experience our conditions differently.
– Tell me how I should feel. That’s up to me.
– Tell me that so-and-so drank this “magic juice” and got better. There are as many treatments that don’t work as ones that do. I’m on the journey to discover this process on my own.
– Compare me to siblings, friends, colleagues, who don’t have health challenges or even those who do. As I’ve stated, I’m on my own path to wellness.
Please do ….
– Tell me that you’re thinking of me. Even if I’m not terribly responsive or talkative it’s wonderful to know that you’re supportive of me and of my health.
– Send me books, magazines, cards, emails, notes, etc. that express that you’re there. Chronic illness can be SO isolating and every kind word from you matters to me.
– Ask if there’s anything specific that I need. Even if I say “no” 50 times out of 51, that one time that I really need something may mean the world to me.
– Continue to search for helpful treatments, protocols, nutrients, supplements, and practices. Just because I don’t always implement your suggestions doesn’t mean I don’t appreciate the help. I’m always open to and encouraged by current news and information.
In Summary of Understanding Fibromyalgia:
My body may bruise like a tender peach, but my will is strong as iron.
Inside, I’m still the same me.
I’m just trying to find my way as best I can.
I’d love it if you’d come along with me on this unpredictable journey.
This being the two year anniversary of my daughter’s wedding, I thought it appropriated to update this post about how I managed fibromyalgia and enjoyed my daughter’s wedding.
curleque by Coffee at pixabay
Dear Friend;
You asked me recently how I am doing after my daughter’s wedding. It took me until now (about 6 weeks) to recover but it was worth it! It was the most beautiful day and I was able to be right there and most importantly, not in pain! I shared about the wedding on my family page The Farmers Place. [Just in case you are curious. 🙂 ]
Mandy with her daughter before the wedding
To be honest, I was really concerned that I would be in a lot of pain on the wedding day. I asked all my chronic pain friends for their suggestions and took as many as I could into consideration. One thing I know, whether a person has a chronic illness or not, is that a wedding can quickly get out of hand. My strongest advice to anyone planning a wedding is to
KISS – KEEP IT SIMPLE STUPID
So here are a few things that I did:
Set Your Goals
If worse comes to worst, what is the very least you want to be able to enjoy? What are the most important things concerning the wedding? I had one goal in mind. To walk down the aisle as the mother-of-the-bride pain-free and possibly without my cane! And I made this happen.
Mandy ecorted in by oldest son, Daniel
Clear Your Schedule for the months preceding the wedding.
The wedding was in May. I decided the first of the year to do nothing that didn’t have to do with the wedding. I scheduled guest writers on my blog (See My Series Letters-To-Friends) and I turned down speaking engagements. Even some of the smaller opportunities were given a “No” response in order to keep my energy for the big goal.
Get on an Anti-inflammatory Diet
I struggled with this one because, in all truthfulness, I am a sugarholic. But I stuck to my guns pretty well for 5 months. And it truly did help me have not just a good wedding day, but all the planning days went pretty well too! I even lost 10 pounds. [I hate to admit it but after the wedding, I kinda fell off the wagon again. So I’m struggling with more pain now but trying to get straightened out again.] I guess that shows that getting on the right diet does, in fact, help a lot.
Prioritize the Wedding Events
Which events do you really, really want to attend? You may have to be selective about which events are most important to you, especially during the week of the wedding. Let’s be honest, we just can’t go like this without paying the price. If we go to everything planned for the week, we could likely miss the wedding altogether. I skipped out on the bridesmaids’ lingerie shower.
Also, plan to block out a day or two after each event because you will probably need it. In our case, both the groom’s mom and I have a chronic illness. She and I got together to address invitations. Who knew that just a simple job of writing addresses on envelopes would be so taxing. Both of us were worthless for a day or two. I might suggest getting the addresses printed on the envelopes. If you are savvy with the computer, you can do this yourself much easier.
Plan Your Doctor Visits Wisely and in Advance
I get an injection in my neck at Mayo Clinic every 4-6 months. Typically, by the time I get to the next appointment, I am usually in a lot of pain. This is a long day trip for us and I am usually down for the count that night and the next day. So when I was there last December, I asked if we could go ahead and schedule for the spring about a month before the wedding. My doctor was happy to oblige me. And I had no neck pain the entire month of May!
Delegate Responsibilities
Another tough one to follow. I am a Type-A personality. Apparently, most fibro warriors areType-A. We want to be right in the middle of all the planning and doing. Thankfully, I have family members and very good friends that took on much of the work. Our daughter-in-law is a go-getter and also doesn’t let people get by with too much slack. She did a lot of the running and directing for me. The wedding gown was being altered about a 1.5-hour drive away. I was able to attend all the fittings but the last one. It was the week of the wedding. Our Daughter-in-law went with our daughter and picked up the gown. She got the instructions for steaming it and such. This saved me that day trip the week of the wedding. Sure, I hated not going, but it kept me in good shape for the most important day .. the wedding!
We found other people that we trusted for things such as flowers and decorations and reception. We gave them basic instructions and then let them run with it. I did have a few sleepless nights because I wondered if they were doing everything just right. But it all turned out beautiful.
By the way, be sure that you delegate people to specific clean-up duties for after the wedding. Especially if this is at your church, it will likely be your responsibility to get everything back in order. With chronic illness, by this time, you will be too tired to do it and everyone will have gone home leaving it to you. For example,
the sanctuary platform furniture returned to normal places,
reception hall cleaned and returned to normalcy,
kitchen cleaned
bathrooms cleaned
and other rooms used by the bride and groom all straightened and clean, waste cans emptied.
[As a pastor’s wife, I know from experience that these are often forgotten. The regular janitor did his work BEFORE the wedding for you, it’s your responsibility to do it after the wedding or pay them to do it again before Sunday worship – which is often the next morning.]
Have Your People Come to You
A friend arranged for someone to do my hair. We actually went and did some hair trials. But then I learned that I was going to have to get up early and go to her house to get it done. I knew this would be too taxing on the day of the wedding, so I decided to fix my own hair at home and arrive at the church in time for pictures with my daughter. My neighbor ran around town looking for a pretty barrette and voila! we had it done. Sure it could have been nicer but I got to enjoy the wedding.
If your beautician can come to your house it will make your day so much easier. I’ve also heard that nowadays there is such a thing as a mobile hairstylist. This would be awesome if you can afford it.
Bring Your Own Chair
I knew that the church had no comfortable chairs. So I had my son transport my chair and footrest to the church the day before. We had this in the bride’s room so that I would have a comfortable place to rest and get my feet up before the ceremony.
I was also concerned about sitting on a hard folding chair during the reception. I had a padded folding chair at the house so we took it in as well. You might take something even better than that. I considered renting comfortable chairs for both family tables and then rent chair covers for them. This really wouldn’t be that great of an expense in the whole scheme of things especially if you are already renting linens.
Provide Accommodations to Visiting Guests Other Than in your Own Home
I have no family nearby. This meant everyone was traveling in for the wedding. In order to keep my home a peaceful place to retreat, I arranged for other accommodations for family members. Check out vacation condos or a bed and breakfast. I went to Airbnb and found a townhouse right in our neighborhood that could house all the bridesmaids and another family just a mile or so away that was renting a suite in their home which was perfect for my parents.
Honestly, I had a wonderful day at the wedding. I was tired, for sure, but who wouldn’t be? It’s taken me some time to get back into my old and new routines but I’m getting there. I hope that your wedding plans go just as perfectly as ours did.
Neck pain is a widespread problem. It often appears because of keeping one`s head in an uncomfortable position for a long time; especially by twisting it up and turning your head. Various aged people have it but mostly 40-60 years old.
image credit : Melisa Marzett
The pain itself is often repeated and brings a lot of problems; such as, limiting movements in the neck, one can even feel it in an arm. There can often be numbness in the hands especially at night.
Other More Serious Issues
Another serious problem is dizziness and sometimes even problems with balance and unsteady gait. Luckily, it doesn’t happen very often. This happens because of irritation or compression of the vertebral arteries inside the neck. The blood gets running through the back of the brain, where the centers of body coordination are located. Such conditions are called vertebral artery syndrome.
Rough rotatory head movements are not particularly recommended. However, gentle movements can be useful, such as “air” writing letters and words with the tip of the nose. It is very good to draw an infinity sign. These movements must be done very slowly and smoothly, without provoking an increase in neck pain. Put it another way, any sudden movements of the head should be avoided.
Reminder: I just want to say that 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.
In no case, should you allow anyone to perform any maneuvers on your neck such as massage, stretching, etc.
Until you have an MRI and no discal hernia is found, maneuvers on the neck are not allowed by any specialists, manual therapists, nor physiotherapists. Manipulation is especially dangerous for patients who have a hernia in contact with the spinal cord or when the spinal cord is squeezed by a hernial bulging.
People over 40 often have osteophytes in the cervical spine. These spinal bone outgrowths direct themselves towards the spinal cord. If you make maneuvers on the neck, this can lead to damage of the spinal cord with irreparable consequences.
Regardless of where you work and your lifestyle, you can get rid of the cause of pain in the neck. Get rid of bad habits, doing exercises for the neck and properly organizing the workplace. If attacked by sharp neck pain, do the following:
Wear a neck collar made of special foam materials. You should choose its size so that there is no over-extension of the cervical spine, as this will entail increased pain.
During the first hours, attach ice wrapped in a towel, or an ice bubble.
Warm-up after the ice has slightly decreased inflammation, starting with a warm heating pad and ending with a hot shower. Do not over cool after a water treatment!
Use warming rubbing, but not at the same time as heating pads.
Take aspirin or other non-steroidal anti-inflammatory drugs, 2 tablets 3-4 times a day after meals.
A set of exercises that relieve neck pain:
Slowly tilt your head forward, then back.
Keep your shoulders still. Slowly tilt your head first to one and then to the other shoulder.
Slowly turn your head from side to side.
Place your palm on the side of your head, and with the palm of your other hand, push towards the first. Hold for 5 seconds, then relax. Repeat 3 times on one side and the other.
Do the same exercise, but only by tilting your head forward, showing your palms on your forehead, slight resistance to tilting your head. Putting your palms on the back of your head, show slight resistance to tilting your head back.
Holding a load of 1.5-2 kg in your hands down, lift your shoulders as if shaking them.
Do each exercise 5 times twice a day. Perform the first 3 exercises for 2 weeks before proceeding to the rest. This workout complex will help to strengthen and relieve the spasm of the neck muscles. Thus, take care of yourself. But do not postpone the solution to the problem of neck pain for a long time.
Bed Position for Neck Pain
Your position in bed is also of great importance when treating neck pain. If the mattress is not orthopedic, place a shield or board under it to prevent excessive bending and extension of the neck. But as soon as you can, it is advisable to buy an orthopedic mattress.
Sleep with a small down pillow under your head.
When you lay on your side, it is better to put a not very thick roller on the pillow. It should fill the so-called arch formed by the lines of the shoulder, neck, and head. In this position, the cushion will help maintain a physiological straight position for the neck without subjecting it to bending, extension or lateral tilt.
On your side, the cervical spine will be located on the cushion, and as a result, the spine, neck, and head will be as if on the same line.
When lying on your back, it is also good to put such a roller under your neck. You can sew it by yourself, it should not be very hard.
When having significant levels of pain, temporarily limit movement in the neck. A special neck collar would be beneficial and recommended. For the first time, you can make it yourself out of cardboard; covering it with a soft cloth from the inside, and attaching ribbons so that it can be tied behind.
Health Disclaimer
Naturally, all the recommendations above are only the first medical self-help.If the pain continues, you should consult a specialist neurologist or orthopedist involved in spinal pathology. But even if the pains have passed after the implementation of these recommendations, and in the recent past you have already had episodes of such pain more than once, you need to consult a specialist doctor and have an MRI of the cervical spine to exclude serious pathology requiring special treatment.
This is a question often posed to the fibro warrior. In short, the answer is YES! After a long night of restless “sleeping”. I finally, got up and wrote about it.
curleque by Coffee at pixabay
Dear Friends;
I’ve been tossing and turning all night because I just cannot find a comfortable position. The pain has been so troublesome since the change in weather back in October. I’m not sure if it’s fibro pain, RA pain, or “good ole Arthur” pain but it is definitely pain. Maybe all of these guys are culprits.
I’m one that has to get busy doing something in order to relieve pain so I decided I would get up and write to you about it. I’m already feeling some better just getting up and moving about.
The Arrival of Cool Weather is a Mixed Blessing.
I have always loved the Fall. It’s my favorite season of the year. Donning a sweater is so warm and cozy; like a big hug. But cool weather brings pain along with it. That part, I don’t especially care for. Yes, the cool weather can affect pain a great deal. The temptation is to curl up on the couch with a fuzzy blanket and watch movies all day. But there is danger in that.
Avoiding the Temptation to Stay Still
It’s kind of an oxymoron-type thing for me – motion. You see, if I stay still for very long and then try to get up and move about, I have extreme stiffness and pain. It takes maybe 30 minutes of gentle moving to relieve the stiffness. But on the other hand, I must take care not to overdo it.
Too much walking and my knees suddenly swell up until it feels as if someone has tightened a belt just below my knee. After that, pain and achiness extend down my leg. (I was never an athlete but my guess is that it feels like shin splints.)
But wait, it doesn’t stop there. At this point, my ankles begin to hurt and then pain shoots down the tendons to my toes with every step. None of this pain subsides until I get home and off my feet for a while. A heating pad usually helps alleviate the pain as well.
But don’t stay there long.
Stiffness will return if I sit for more than 30 minutes.
So, there you have it. How cool weather affects pain from my point of view. Science doesn’t seem to really know why it happens, but if you want their opinion, you can check out what WebMD has to say about it.
Is there anything that helps or anything you can do for me?
hmmm.
Your prayers mean the world to me. Trust me, I feel the prayers of my friends and family. I really couldn’t make it without them.
I would love a swim in a warm saltwater pool. Water therapy is amazing. It lifts all the pressure off your body. But there doesn’t seem to be a pool around here.
So other than prayer or a vacation to the Carribean 🙂 …anything that will distract me:
Give me a call once in a while. (I get lonely sometimes)
Buy my a new heating pad, blanket, good book, or CD (Music, I love music)
Foods that help or at least don’t worsen the pain: Smoothie, Dark chocolate at least 70% Cacoa (Here’s my favorite-no soy), green tea
Well, I have sat here writing too long and my knees are stiffening up. So I best close this letter. Be sure to ask me anything you would like to know about my pain journey. I’ll do my best to give you an answer.
Thanks for asking and caring,
It Makes you have brain fog and spell things wrong.
Unfortunately, there is no known cure for fibromyalgia (FMS). Myriads of symptoms make it nearly impossible to narrow down the problem. Additionally, and the reason the cure is unknown is that researchers are uncertain what triggers fibromyalgia. Studies show that most patients have had some kind of traumatic event in their life, such as surgery, an auto accident, abuse or even living in a war zone. The pain can be triggered at any time.
In my case, there is not any real event that we can point a finger too. However, I can see several indications that I have been dealing with the pain of FMS most of my life. In 5th and 6th grade, I suffered greatly from what they called ‘growing pains” and I have always had curious scalp pain from wearing a hairpin or a hat. So Who really knows.
Is It Even a Disease?
Fortunately, in 2015 the CDC finally came up with a diagnosis code, declaring that Fibro IS a disease and that all these patients have not lost their minds. Without this code, doctors did not take the problem seriously. Diagnosis has been difficult because there are no markers to show that one has FMS. Patients have terrible pain but a cause is not found. Nothing shows up in an x-ray or in the blood work. It has been called the Invisible Disease. Doctors can only arrive at the diagnosis by the process of elimination.
For me, it took 6 months of extreme pain to finally arrive at Mayo Clinic for three days of lab work (drawing 16 vials of blood), x-rays, body scans, balance testing and more. These tests ruled out MS, Rheumatoid Arthritis (RA), Lupus, and other diseases.
Associated with Other Problems
Fibro likes to hang with a dozen other syndromes that all fall under the umbrella of Central Sensitization Syndrome (CSS). One can have several of these syndromes and likely will add more of them as time goes by. At this point, I have Chronic Pain Syndrome, FMS, Myofascial Pain Syndrome, and recently added TMJ to the mix. Along with these, we found later after reducing my steroid intake that I do indeed have RA.
Hope For a Cure For Fibro
Researchers have recently found some new markers and with a little more research it is possible that they may have found some indicators in the blood that are common to all patients.
If you would like to keep up with the latest news on FMS, follow my pain warrior & blogger, Donna at Fed Up With Fatigue. She reports on any important news in the field.
Thanks for asking;
This post was inspired by the Five Minute Friday Prompt: Unknown. FMF writers accept a new prompt every week and write for 5 minutes. No editing. Come read what others were inspired to write today.
Sometimes family and friends are not certain how to help the chronically ill handle the holidays. Debra Lyons offered to write a letter to you. Read on…
curlicue by Coffee at Pixabay
Dear
family and friends,
It is hard to believe that October is here and with that comes the anxiety of handling the upcoming holidays. I realize that we all experience some form of anxiety and pressure when the holidays come along. But the anxiety, I am referring to is not caused by last-minute shopping or not being able to find the perfect gift. It’s a result of being chronically ill and not knowing what to expect from one minute to the next. This makes all the planning that goes along with the holidays quite stressful and emotional for me.
Don’t take that the wrong way. I want nothing more than to…
spend the holidays with you,
visit with family I may not have seen for a while,
take pictures that will save memories that most likely my foggy brain won’t retain itself,
stay long enough to enjoy dessert and
bask in all the glory that the holidays used to mean to me.
Handling the Holidays Is A Fight
But I fight my body every day and I fight even harder on holidays because I don’t want to disappoint you and, I truly don’t want to miss spending the day with you. I love spending time with you and when I am around you and others, I try to be the me that you remember. I try to put on a happy face, smile, laugh and enjoy my time with you. You have no idea how much effort is put into pulling that off.
Every day I am in pain, it’s just the degree of pain that changes. Some days I can’t even dress while other days I can be self-sufficient. It takes me hours to get ready because I must take breaks in between every act I perform.
Shower,
Rest,
Blow-dry hair,
Rest,
Style hair
Rest again
you get the idea.
And then, of course, there are those days, no matter how much I think I am up to the challenge, I simply cannot will the strength to make it out of the house. I’m not complaining. I love to be with you, and I do appreciate the invitations so please don’t stop inviting me. I may have to say no on occasion but please give me the opportunity to say yes to that one moment I can get together with you. I truly don’t want to miss it! See Shona’s letter about Getting Ready for Church.
And please, don’t tell me NOT to bring anything to your house.
I don’t want to feel like there’s something special or so frail about me that I can’t pick up a bottle of wine or make cupcakes. It may take me a few days to get to it, but I CAN do it! And if I must buy the cupcakes, well, it won’t be the end of the world. There are many things that I am no longer capable of doing but still so much that I can do, using the coping tools I have learned, and I ask that you let me decide what I can and can’t do. Just ask me. I have had to learn to be brutally honest with not only others but myself. “No” has been the hardest thing to learn, but I would like to be the one to decide what is too much for me.
Grieving my Losses
I’m reflecting on last Thanksgiving. I made it! And it was so good to see everyone. I felt so bad that everyone went through so much trouble to make me comfortable, but I ended up having to leave early. At home, I have so many tools to ease my pain and make me comfortable. And for me, when I am feeling ill or in pain, there truly is no place like home. It has no reflection on you or your home. It’s often difficult to handle the holidays.
Precious Memories
I don’t know about you, but even if I only get to spend an hour with you, the memories that were made in that hour are very precious to me. I spend a lot of time alone, so I make an extra effort to get to these get-togethers. We have been doing them for so many years and some of our loved ones have gone onto a better place and we remember and celebrate them during the holidays while we are all together. There’s mom’s biscuits or your mother’s stuffing recipe.
These are moments that are so precious to me. I don’t want to miss them, and you can bet that if I do, it’s because I lost the battle, temporarily, with this body of mine. I think about when the kids were little, and I would run out after work to do some secret “Santa” shopping before I got home. I could be going for hours hopping from store to store and still get home and make dinner. Now I do most of my shopping online and meals are often, take-out. See Mandy’s Pain Comes for the Holidays
Making the Holidays Less Stressful
I hope that having some of the information I’ve shared with you will help us all handle the holidays. I appreciate you for taking the time to read my letter and for trying to understand what is often difficult for me to understand myself. What I do understand is that even though our visit may be short, and the efforts I had to take to get to you can be quite painful, if I can make it, I’ll be there.
I care about all of you and I thank you so much for your compassion and understanding as we handle the holidays together. While those looking in at my life from the outside may see a broken woman, I see me as I’ve always been, just with a broken body. And I am thankful and truly blessed to have the love and support that you all have shown to me.
As we celebrate the first year of our new blog, we don’t want to leave out all the information about fibromyalgia that Mandy and her friends have written about. This area seems to be the most favorite section of the blog. We certainly hope that you have learned much about this invisible and painful disorder.
A Dozen Most Read Fibro Posts
image created in canva
Here’s a dozen our the most favorite posts. Have you read them? What have you learned? What other questions do you have that we can answer in the future? Please leave your question in the comments.
Mandy finds that her faith is what helps the most in managing her pain and her life with Fibromyalgia. Here are two posts on the subject of Faith and Fibro.
So this is the cream of the crop of Letters to Friends. if you have read these, you can understand that this disorder is definitely a real problem.
What subjects haven’t we covered? Leave a question in the comments. I’ll answer personally here, but will most likely also write a post concerning the subject in the near future.
I am toying with writing some about Rheumatoid Arthritis since I also have this rheumatic disease. These two often go hand in hand. Would that interest you?
Please take our survey. We really want to know what you think and what you want to see in the future. We’ll send you some printable scripture cards for your trouble. Just click on the ribbon below.
Michele and I are amazed at how fast this first year of blogging has flown by. We hope that you have been enjoying the ride with us. Today, we take a look back and share with you some of our top posts. The first category is Keeping the Faith. That is posts that show you how to Read Your Bible, Pray, Share Your Faith. The second category is called Leaving a Legacy where we write about Marriage and Family, mentoring, and remembering others’ legacies.
Top Posts from Recipes, A Bit of Fun and The Spice of Life
And now how about a little fun and spice? Michele has really kept me laughing this year. I hope she has for you as well. Here are the top favorites from her repertoire.
Many of these posts are written by guest writers. That tells me we need to continue having others write so that their followers come and find us. This summer we started a monthly link-up called Legacy Link-ups. This has been a good way to increase our traffic as well. We may continue this as well.
The top posts written by Mandy are those about chronic pain. We will share those in another post this month. Michele provides the humor on this blog. If you haven’t caught her Spice of Life posts be sure to go find them.
Tell us what you would like to see in the coming year.
I have created a quick survey. Please go take the survey and we will give you a small downloadable gift for your time.
Take a survey & receive a free downloadable
Return all Month for more Celebration. Plus another This and That interview with Mandy and Michele!
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.
This post was updated and moved from Mandy previous webpage ggmandy
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.
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
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 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
Monster’s Inc.
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
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 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 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.
Question: Are you taking any supplements for fibromyalgia? What about Opioids?
With all the discussion about the opioid crisis, I thought it would be great to get some feedback from other fibro warriors about opioid use. Heather Calvert has written to us on how she chooses her supplements and how she manages opioid use and determines if an opioid is even necessary.
Dear friends,
I am so excited to say that today is a good pain day. I woke up relatively refreshed and a little stiff, but not miserable. I’m excited to have a good day and actually enjoy living my life! This is the first day in several weeks facing the day did not involve a sense of dread and anxiety. You see, the last few weeks I have battled my most severe fibro flare in years. The pain was excruciating, nausea and IBS are disruptive and embarrassing, and the fatigue is overwhelming. I’m 43 going on 103 on those days! The best news is today I only have to take my maintenance meds for asthma, reflux, and allergies, as well as my usual supplements for energy and focus.
First, I should explain that I absolutely despise taking medicine of any sort, especially those that affect how clearly I think or that result in grogginess (think about the “My cold made me do it” commercials).
Unfortunately, I have adult-onset asthma that started in my 30’s that requires one pill and an inhaler twice a day to prevent attacks.
Second, I have GERD treated with a single pill each day to prevent the belching, nausea, and vomiting that occurs if it gets out of control.
And of course, I live in the south where pollen season is our fourth season so practically everyone I know takes allergy medicine daily!
Supplements for Fibromyalgia
My supplements are based on years of trial and error, and with the support of a great family doctor who listens and offers alternatives to prescriptions, I have finally discovered a combination that seems to help. I don’t just willy nilly take random pills to see what happens! My husband and I do tons of research and discuss ideas with my doctor before we try something new.
D-Ribose for Energy
D-Ribose is the difference between my having the energy and stamina to trek through an amusement park with my family and friends and me being stuck at home on the couch while everyone else has a good time. Research shows D-Ribose was initially used for cardiac patients to help improve cardiac function. It gives the mitochondria (energy producers) in your cells a form of sugar that is easily converted to energy. I was skeptical at first, but it definitely works!
Daily Supplement
My other daily supplement is Focus Factor, a blend of magnesium, B vitamins, and a whole bunch of stuff I can’t pronounce. Originally marketed as a treatment for ADHD, this supplement fills my body with vitamins and minerals commonly deficient in fibro patients so I only have to take 2 pills twice daily instead of a handful of vitamins multiple times a day.
So, a good fibro day means 4 pills with breakfast, 3 at supper, and 2 a bedtime. Woohoo- that leaves room for dessert!
I know, I know – why am I excited about only taking 9 pills a day?
Well … on a bad day, let’s just say there is no room for dessert! On top of my usual 9 pills, there’s a myriad of what we call my “crisis” meds.
Prescriptions for nausea and IBS,
muscle relaxers,
migraine treatment,
and the ever-controversial opioid for pain.
Why do I choose to take an opioid in what is identified as an “opioid crisis” by the media?
To be honest, I hesitate every time. I choose to be an informed, cautious user. In fact, I refuse to have personal access to my opioid medication. It stays locked up in a small, fireproof safe that only my husband has the key for.
In fact, I don’t even know where he keeps the key! When I think I am to the point where I need the “crisis” med, my husband and I sit down and discuss what other options I have already tried and how severely the pain is affecting my ability to function.
We are well aware that abuse can lead to addiction and overdose. We also know that with teenagers in the house, misuse is a high risk. So, together we make the decision to keep it locked safely away and when to use it.
How do we know an opioid is absolutely necessary?
To be honest, the pain must be completely and totally overwhelming me. And I’m not talking the can’t get comfortable, no sleep, crying kind of pain. I’m talking the can’t even make words, just barely groaning kind of pain. The truth is, I should probably take it sooner, but a family history of addiction often clouds my judgment. We know it was the right call when the pain eases and I am actually more alert and active, not in a medication-induced fog.
Being a fibro warrior tests your ability to think critically and creatively for solutions.
The good: supplements with low side effects, finding a doctor who listens and is willing to try new things, prescription meds that are available for treating symptoms, a husband who is just as invested in my treatment as I am.
The bad: fear of addiction that forces me to suffer more than necessary, cautiously treating a myriad of symptoms on flare days, anxiety that I may be viewed as a lazy, addicted, drug seeker.
The daily decisions: never-ending research, choosing to face my fears even when I’m exhausted, trying alternative treatments, brutal honesty with my family and doctor.
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