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.
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’ve heard that we can re-train our minds and deter some of our pain. This year, I would like to instill some “feel-good” scriptures in your minds to help fight against the drudgery of our invisible pain. I have asked fellow pain warriors to write a quick note of encouragement using scripture that helps them get through the pain. Here is the first one by my dear friend, Bettie Gilbert who has shared here on the blog before.
Dear Family and Friends,
Thank you for being so concerned for my health, and for asking how I am getting along.
Recently I was reminded of a Scripture Verse that confirmed what both my Physical Therapist and my Counselor had shared with me:
Did you know that the same areas of your brain that were triggered during a pleasant experience years ago, will be triggered again just by remembering it?
My counselor offered a beneficial practice for me then, on days when I am feeling low or depressed. She said that if I would look back and try to remember better days, and to even try to think about the specific details of a good experience, then those same areas in my brain would be triggered with “feel-good” chemicals now.
My physical therapist went a step further and said that studies have found a real benefit in pain therapy when a patient can remember a time of exertion, such as walking or working out, and slowly pace out the memory as if they are “walking” again in their mind. The right-left sensations trigger those same areas in your brain to produce those “feel-good” chemicals, and even can stimulate pain relief in some patients.
Walk the Halls of Memory
So, on days when you see me feeling particularly low about the days gone by and all that I cannot accomplish now, maybe we could join in a session of “therapy” and walk the halls of our memories together. Who knows, maybe your own “feel-good” chemicals might be given a boost as you share those pleasant memories also.
Isn’t the working of our human body and brain incredible?
Truly we are “fearfully and wonderfully made” as the Psalmist tells us:
“I will give thanks and praise to You, for I am fearfully and wonderfully made; Wonderful are Your works, and my soul knows it very well.”
I am praying for you my dear loved one, as you have reached out to me. May you feel so blessed by God as He pours His compassion through you.
Your loved one in Christ,
Thank you Bettie for reminding us of these feel-good scriptures. We can always depend on you to come through with great encouragements.
IT’S YOUR TURN!
Share an encouraging post on your feel-good scripture. It can be about getting through whatever you deal with… not just pain like Bettie and I..
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.
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.
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. 🙂 ]
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.
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!
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,
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.
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.
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?
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.
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…
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.
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.
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.
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.
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.
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”
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.
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.
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!”