I am in my 20th year with Fibromyalgia.
Not that I am celebrating or anything of that sort. But I was reflecting back on how this disease began and how it changed my life…some for the better. Together with American Recall Center, we want to spread awareness about Fibromyalgia.
Is that even possible? That something so debilitating as Fibromyalgia could change me for the better?
I think so. Let me share how it started and where I am today. If you suffer with Fibro, or think you might, maybe this will be a help, and even an encouragement to you.
I’ve always tried to figure out the why and how of this sickness. They used to say it could be brought on by trauma and I wondered if a car crash I was involved in when I was 22 was the cause, or maybe contributed to it.
I have also blamed many of my health problems on the evil poison, aspartame. I did drink Diet Coke for about five years, although I have been clean for almost 15 years. I avoid that toxin like the plague. I know without a doubt that it has cost me some of my memory and I may never know what else it did to my body. Yes, I really do believe what I read about aspartame. Yes, I realize there are many things we ingest that are bad for us, this is just one thing I am sure is killing us and causing multiple health problems. I know many others that suffer with this same disease that also drank diet sodas and many other things that are laden with this poison.
My first noticeable symptom with Fibro was neck and shoulder pain, always feeling like I needed a good deep tissue massage. I just didn’t think much about it, I was too busy raising My Three Sons. But when my youngest was about 1 ½, I began having breathing problems. I felt as if I had an elephant sitting on my chest. I could not get a deep breath unless I really worked at it and I was breathing in and out with constant effort. My chest really hurt at times, I would even think maybe I was having a heart issue, except it seemed silly at 32 years of age. I was healthy otherwise, walking 2-3 miles each day and felt good…if only I could breathe!
The tests began and each one would come back normal.
I felt anything but normal.
I cannot even remember all of the tests that I had so long ago but I remember when they started testing my lungs that I thought maybe it was just all a nightmare and I would wake up one morning with it all gone. Back then, fibromyalgia was not easily diagnosed and those who understood it were few and far between. It was difficult to get someone to take you seriously.
One night I even ended up in the ER because the pain was so intense, I could not get any relief and I could not get my breath. The ER doctor suggested something to relax me, and implied, without coming out and saying it, that it was all in my head. I was devastated. How, and why, would I make something like this appear out of thin air?! Why would I want to feel this way?!
I refused the tranquilizer and went home feeling worse than when I came. Shortly after this I ended up in a doctor’s office where this wonderful man said I wasn’t crazy. That my symptoms matched something called Fibromyalgia. MayoClinic.org defines it this way:
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.”
In my case, he said, I was not entering REM sleep, and had not for years. My body was reacting by constricting the muscles in my chest, causing the pain, discomfort and breathing difficulty. If I could begin sleeping deeper, he was sure those symptoms would cease.
He was correct. One night on a 10 mg dose of Elavil (amitriptyline) and I was fine! The breathing problems stopped and the pain in my chest was much better.
Over the years though other symptoms would come, some would go, good days and bad days alternated like the weather. Some years I was on more medication than others, but nothing seemed to take away the overwhelming fatigue and widespread muscle pain. There were a couple of times that I even seemed to go into remission. I would feel almost normal for months at a time, only to have it return with a vengeance.
Thankfully, today it is not looked down upon and you can get help. So many symptoms accompany Fibromyalgia, even though one might experience some and others entirely different issues. It affects so much of your body! Some symptoms include:
- Chronic muscle pain, muscle spasms, or tightness
- Moderate or severe fatigue and decreased energy
- Insomnia or waking up feeling just as tired as when you went to sleep
- Stiffness upon waking or after staying in one position for too long
- Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”)
- Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
- Tension or migraine headaches
- Jaw and facial tenderness
- Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
- Feeling anxious or depressed
- Numbness or tingling in the face, arms, hands, legs, or feet
- Increase in urinary urgency or frequency (irritable bladder)
- Reduced tolerance for exercise and muscle pain after exercise
- A feeling of swelling (without actual swelling) in the hands and feet
I could relate to at least eleven of these fourteen symptoms. I couldn’t believe there was a connection! Exercise certainly helped; especially weight-lifting, or strength training. I don’t think it made me feel better but psychologically it was a benefit. I felt as if I was trying to fight it and of course, that is half the battle, the want to.
Do you suffer from Fibro? Do you struggle with getting out of bed some days, or most days? How about depression? Is that an area that is difficult for you? Many Fibro sufferers do have depression and it is easy to see why. The lack of sleep combined with all of the pain and fatigue would be enough to depress anyone. And if it comes upon you suddenly, it can seem as if your world has come to a halt.
If you do not have a doctor who specializes in Fibromyalgia…find one! Many Rheumatologists make that a priority just as much as the myriad of other diseases they treat. Search until you find one that takes you serious and then stick with him/her and give their treatments a chance to work for you.
What has helped me the most over the last 20 years?
Exercise whenever possible. Walking was my favorite and as I mentioned, strength training. I also feel like water aerobics and swimming are very beneficial. I’ve joined the YMCA and participated in classes that focus on strength and recovery.
Less medication is best because of so many side effects. Yet we understand sometimes it is unavoidable.
Get plenty of rest! When my body screams for me to lay down I would usually have to oblige. It would help me get through the day.
Prayer. It isn’t last on the list…it IS the list. Without a doubt. Those days I couldn’t get out of bed I would ask the Lord to strengthen my mind along with my body. He always showed up. I may not understand the why even today but if I can help someone else by having gone through it myself, it is always worth it.
Have you purchased your copy of The Daniel Fast, A Devotional? Still going strong on Amazon in paperback and Kindle! Great for any fast, all year long devotional. Be blessed!
Sharing with Wise Woman Linkup, Blessing Counters, Grace and Truth, Weekend Brew
I am glad that you found the right doctor who could atleast identify the ailment and even the source of your pain, that was the best part because in most of the autoimmune cases the source remains elusive.
Not that I am a health nut by any means…I should be better. But I do believe what I have read about aspartame. So concerning! Thank you for visiting Beth!
Thank you for sharing your journey, Nannette. I must say I was convicted about what you shared on aspartame. Loved that you ended with a focus on prayer. Blessings to you.
Thank you so much for sharing your journey with us! I’m glad that you’ve found positive ways to address the symptoms.
Thank you Heather. Yes, there are so many crazy causes of Fibro. I am thankful for God…I could not make it one day. ♥
Dear friend of mine,
Boy, do I relate to attributing the other problems throughout the years … not knowing… trying to “fix” them. There are so many more known “causes” now to Fibro… well, really “many but not one”. Drs have identified my “over firing” sympathetic nervous system. In other words, my body is always “on”!
Thank you so much for this encouraging life share here. I most certainly turn to God. He’s healed he before and I believe for another… but until then I pray He uses this for His glory and I can bless others and be blessed through this Fibro.
Love you!!
You are so right, it is not beautiful 🙁 A couple of people misunderstood my title, it was meant to be totally tongue-in-cheek and in reference to the fact that it used to be considered psychosomatic. And getting a doctor to take you serious was very difficult…back in the day. 🙂 Thankfully, today it does get more attention, why and where it came from, who knows. But most likely so many of our illnesses come through our diets; what is put in our foods. So unfortunate.
I am so happy to have found you too! I love making new friends and didn’t realize your Beautiful Sunday was small but I will pass the word around! Blessings to you friend.
Hi Nanette!
First, let me thank you for joining my ever shy and silent Beautiful Sunday series. It was usually only Diane of Lavender Dreams who would join me. It was always the two of us haha I was surprised to see additions in my linky party. Your presence there is enough to make me happy. However, when I read your post… I felt more than happiness. I feel so honoured that you decided to share your beautiful story in my page. Fibromyaligia isn’t beautiful but your journey of survival and faith made everything beautiful and inspiring. I learned a lot from you. I was oriented to the rare disease. But more importantly, it feels so great to listen to your story of survival.
You are included in my prayers. 🙂 Hope we can become friends , albeit online.
Have a great day!
Bless your dear heart! I didn’t realize you had fibro. My dear Mom had a SEVERE case of it for years. She suffered so much. Two of my sisters have been diagnosed, and of course, I wonder about some of my symptoms, also. Have you ever heard of it causing swallowing difficulties and issues? This is something I am just beginning to hear about. So thankful, we serve the Great Physician Who is able to heal all manner of sickness and disease…no matter how long we’ve had it, what stage it’s in, or what name has been attached to it. He is faithful!
It seems more and more folks are being diagnosed with this. Great info, thanks so much for sharing at AMAZE ME MONDAY…
Blessings,
Cindy
Meghan, what a wonderful attitude you have. I know what it feels like to, to look right on the outside as if nothing is wrong…but your insides hurt so badly you can’t get out of bed. 🙁 So thankful you are a little bit better and able to function. Thank you for sharing your story! Praying for you today. ♥
I was diagnosed 21 years ago when I was 28 years old. At Christmas that year, I got very sick with the flu and bronchitis. It took me three weeks to recover. Then in February, I woke up with severe knee pains like I had taken a bad fall on them. Shortly after that, I had numbness and tingling in my hands and feet and strange sensitivities to lights. The constant aching in my body came next. I finally saw my family doctor who couldn’t find anything wrong but was sent on to some the of best specialists in Minnesota. Most of them told me I was depressed and it was all in my head! Grrr! I wasn’t depressed till I got so sick I could hardly leave my bed! Finally after a year, I went back to my internist and he looked at my records and my symptoms and was diagnosed with fibromyalgia. It was a happy day for me-even though the diagnosis was the pits.I too was put on antidepressants which helped control the pain and I still take a small dose to this day. I am one of the fortunate ones who progressively got better. I am able to work and function pretty well although as I sit hear writing this, I can feel the tingling in my hands and legs and my hands feel very tight and swollen-although they don’t look swollen.
My heart goes out to the men and women who are totally diabled by this condition. It is really hard to look fine on the outside and feel terrible inside.
May God bring you health and healing in Jesus’ Name.
We know where our strength comes from Joanne! Thank you for your words today, they were a part of my morning devotion! ♥
Nanette, I am so sorry you have suffered from fibro. I am grateful you have found relief. I admire you for sharing about it & getting valuable information out to others. Made me realize you are taking what the enemy intends to harm & turning it into a blessing. Love that about you! Blessings!
Nannette, thank you for the invaluable information. God bless you.
Boy do I understand! I have had fibro for over 30 years. My dad used to tease me as a teenager because I always went to bed early. Of course, not a mean tease….just giving me a hard time!
I remeber times of going to the chiropractor and it being mentioned to me about fibromyalgia, but I never thought anything about it. I was taught “live with it and that’s life” attitudes so that is what I did! Shoulder on! Years later, after having our kids, the mission field, and teaching school would I finally start to understand what fibromyalgia was. My daughter was writing a paper on fibro when she says, “Mom…this sounds just like you!”. I started reading the book and saying…”OH…that’s why I feel like that! Oh, I didn’t realize that was even because of fibromyalgia.”
Did I do anything about it? Nope! I didn’t want to be labeled with a “condition”. My husband was an insurance salesman at the time, so I would “live with it” some more. But it started getting worse. I would have days where getting out of bed was a battle. I would be walking down the hallway dragging my right leg behind me. I could hardly climb the stairs without crying…which is hard when you have your students there watching you!
I continued to keep on keeping on!
I must say that during this time…God always gave me strength! He is the One to keep me going when I didn’t understand it all.
Then 7 years ago I had a major car accident and that became my most defining moment in my life. My world changed! No more teaching, no more shopping….I know right!….no more “normal” …if there was ever such a thing! Lol! A wheelchair would be needed…praise the Lord I don’t have to use it in the house! My life is my chair and my bed.
God gave me the verse….2 Cor. 12:9. “And He said to me, My grace is sufficient for you, for My strength is made perfect in weakness….” for years I would stop right there. It gave me strength…comfort….peace.
But then we moved from GA to eventually end up in AZ to help my body. First we thought it was my back, but it ended up being my fibro for the most part. The worst part is my back causes my fibro to flare…and then my fibro flaring will irritate my back…a never ending cycle!
God had to show me that….guess what…I didn’t finish the verse. “Therefore most gladly I will rather boast in my infirmities that the power of Christ may rest on me.”
So….that is why I am commenting today (sorry for the length of this post). I am boasting that…Yes, for sure, Fibro is not cool!….God’s plan is perfect! His plan is Love! His plan gives us power in our weakness!
He has changed me through my fibromyalgia. He has shown me more in these past 7 years than I had all the years leading up to it! That is how great and wonderful He is. And no matter how horrible the days are….I would not trade them for an easier life if it meant I wouldn’t grow in the Lord!
My late Mother was also diagnosed with Fibromyalgia – at the Mayo Clinic. Unfortunately, they missed the fact that she had several life threatening health conditions – they didn’t even check for those (yes, those are what took her life). And the Elavil just masked the symptoms. There are many terminal conditions that have many of the same symptoms as Fibromyalgia, but doctors are often too quick to hand out a diagnosis of Fibromyalgia, without looking as deeply into things as they should.
Whatever your diagnosis, it is certain that “God is our refuge!”
Thanks for sharing, my Mom has also been diagnosed with fibro.
Love your attitude, Nannette. My sister suffers from fibro as well, but has a similar attitude as you. Not an easy life, but our Father’s hand guides and lifts all of us along one way or the other. Great testimony, sister.