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.
This is a question that most friends and family never think to ask, “How are your finances?” It’s a little personal and maybe that is why no one asks but the truth is that sickness can take a big toll on anyone’s finances no matter how much insurance you have. Not only does the patient lose work time but also the spouse or caregiver. I am told that sickness is the number one reason people file for bankruptcy. (See this article at CNBC)
My friend, Colleen Sullivan knows about the challenges in finance due to her own journey with fibromyalgia. I met Colleen through the Christian Chronic Illness Network. She has offered to share her struggles with staying afloat and the lessons learned.
About a year ago, I learned that I have severe osteoporosis. I was literally, blown away by this news because I was a lover of all this dairy. But this was caused largely due to medications that were stealing calcium from my bones or not allowing it to absorb into my bones. On top of this because of my debilitating diseases, I was not getting any exercise. And if you aren’t doing weight-bearing exercise, your body is not being instructed to build bone.
Now, at my diagnosis, I’m sure that my doctors said to try to exercise some. But they never gave a “why” to exercise even though it hurts. No one said, “Look, if you are moving then down the road you will have osteoporosis.” And though it was the drugs they prescribed, they didn’t instruct me to get a DEXXA scan earlier than the typical age of 65.
Seriously, friends, when it comes to your health, you best be checking those medications and seeing what you are up for. You better take the things your doctors do say seriously. Do your research and ask questions. Don’t assume that your doctor is doing everything he can for you.
Originally posted in ggmandy dot com in 2017 but still valid today.
And again November 22, 2018
Dear Friend,
The other day, when you heard about my diagnosis of Fibromyalgia, you said to let you know if there was any way you could help. I thought I might write to let you know how you can help. I know that you mean well; but, this kind of offer puts me in a quandary.
You see, I am not really sure how to answer that. There might be something that I know you would do and I would ask you but there are so many needs and I really feel like I am imposing to ask for your help. Unless you are a really, really good friend, I probably will never call on you for help even though I know your offer is sincere.
It’s like at Christmas or my birthday, I would really rather you listen to my conversations and watch my life and see where the needs are. Then make a specific offer, such as, calling up and saying, “Hey, I’m at the store can I pick anything up for you?” Or maybe offer to give me a ride to the store with you. Or if you know I have a doctor’s appointment or therapy session, offer to give me a ride.
These things are so helpful. Plus they give us some time to visit. This is really nice because one of the biggest issues I have is that I get so very lonely. I seldom get out of the house except to go to the doctor. I don’t get to go to my regular activities anymore and few or none of my friends drop by for a visit.
Hey, you know what would be really nice is if you would just choose a specific day of the week that you would come by. It might be just to visit or to bring food or watch a movie. I would be looking forward to that every week. (Kinda like that movie Tuesdays with Morrie.)
Finally, there are many, many things that you can do to help. A friend of mine gave me this list. It’s really a good list of ideas of ways someone can help the chronically ill. Maybe it will be helpful for you, so I’m going to make it available as a free download.
Thanks for loving and caring about me. It means so much to me.
See you on Tuesday! 😉
Savannah, GA
Here’s the list to the downloadable page – Just Click Below
originally posted November 2020 – #votingwithchronicpain
Dear friends;
Greetings from my recliner and a heating pad!
Did you get to vote in the recent elections? My husband and I managed to get out and vote yesterday in spite of knowing that there would be long lines. And indeed, there were. When we arrived we saw a line that extended outside and through the filled parking lot. We figured as much since there were cars lining the streets as we approached. We decided to park in the school parking lot across the street and walk over.
As we walked onto the campus where the voting was taking place we were reminded of two years ago when the lines extended as far for the presidential election. Wow! It’s surprising, no not really with the political atmosphere we have been in for two years, but midterm elections are usually not that big of a deal.
Follow along and learn about my first signs of fibro myalgia. It started long before I realized it.
originally posted on March 12, 2018
Dear Family and Friends;
Thanks for checking on me the other day. You asked about my first signs of Fibro. As you know, I acquired disembarkment disorder after our cruise to the Bahamas in February 2011 (which has never gone away), followed by neck pain, and then I was hit suddenly with extreme, contracting back pain in September that year.
Earlier First Signs of Fibro
But as I have learned more about Fibromyalgia, it seems there have been several signs of it from early in my life.
Do you remember all those chest pains I had in middle school and high school?
They could never find anything wrong so they called it growing pains. Ha! If that were so I’d be about 6 feet tall! Anyway, it turns out that many of us fibro warriors have experienced “growing pains” at puberty. So my first signs of fibro were probably chest pains at 11 or 12 years of age.
Always Just So Darn Tired
provided by five Minute Friday
It has also dawned on me that one major symptom of fibromyalgia is fatigue, tired for no particular reason. You know, I have always been tired. I get so tired from a shopping trip or band event. I would fall into a deep sleep immediately after arriving home from any kind of event. Really, I would fall asleep as soon as I got still.
I would sleep the entire way! When they finally realized I had thyroid issues, I thought that was the answer. And while the medication does keep everything stable, I still feel like there are more issues than what is being addressed.
All My Life Signs of Fibro
So evidently, I have had fibromyalgia nearly all my life. It’s just that the cruise somehow awakened the monster.
Thanks so much for taking an interest in my life. I know you feel that your hands are tied because you live so far away, but believe me, your frustration would be the same if you lived next door. Your prayers and calls mean so much to me. It would certainly be nice though if we were closer. Then at least you could come to visit. But I would miss that even if I weren’t ill.
This scripture jumped out at me since I can totally relate. Pain most of the time. And we live only on Social Security. Thank God for Medicare and Medicaid or we could not make it. Especially with inflation the way it is. This portion of Psalm 69 needed little change to apply to my life.
This is a paraphrase from Psalm 69, continued. [First part here] David had many times in his life when he felt he was drowning in troubles. This scripture jumped out at me as I read “poor and in pain”. I can relate to both of these entirely. When I read this psalm of David I can feel my own soul praying this prayer with just a few changed words. As you read it, you may understand some of the things that chronic illness causes in our lives. My words are in [ ]. Highlighted words link to another post I have written concerning the issue.
Mandy’s Psalm continued…
Answer me, Lord,
for your faithful love is good. In keeping with your abundant compassion, turn to me. 17 Don’t hide your face from your servant for I am in distress. Answer me quickly! 18 Come near to me and redeem me; ransom me because of my enemies.
You know my pain
19 You know the [pain] insults I endure— my shame [flares] and disgrace [fatigue]. You are aware of all my adversaries [invaders of my health]. 20 Insults [Unable to serve as I once did] have broken my heart, and I am in despair. I waited for sympathy, but there was none; for comforters, but found no one. [They came at first, but now, no one]. 21 Instead, they gave me gall for my food, and for my thirst they gave me vinegar to drink. [They say I don’t look sick and that I am making it up. This tastes like vinegar to me.]
Repay Them For What They Do
[ I’m a bit shocked when I read words like these from David, I am more inclined to ask God to open their eyes and understand my plight.]
22 Let their table set before them be a snare, and let it be a trap for their allies. 23 Let their eyes grow too dim to see and let their hips continually quake. 24 Pour out your rage on them and let your burning anger overtake them. 25 Make their fortification desolate; may no one live in their tents! 26 For they persecute the one you struck and talk about the pain of those you wounded. 27 Charge them with crime on top of crime; do not let them share in your righteousness. 28 Let them be erased from the book of life and not be recorded with the righteous.
Prayer for Protection
29 But as for me—poor and in pain— let your salvation protect me, God. 30 I will praise God’s name with song and exalt him with thanksgiving. 31 That will please the Lord more than an ox, more than a bull with horns and hooves. 32 The humble will see it and rejoice. You who seek God, take heart! 33 For the Lord listens to the needy and does not despise his own who are prisoners.
Let God Be Praised for His Protection
34 Let heaven and earth praise him, the seas and everything that moves in them, 35 for God will save Zion and build up the cities of Judah. They will live there and possess it. 36 The descendants of his servants will inherit it, and those who love his name will live in it.
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.
When we receive severe diagnoses, it can shake us to the depths of our souls. And many times, we don’t hear anything the doctor says after that. The last thing you need to do is sit down and give up. Let’s review a few things our doctors may or may not have expressed to you at that initial appointment. These are some things I neglected to do and have learned the hard way about it.
Welcome to Letters to Friends where fibro warriors explain the pain. If you have other questions, we may have answered them here or you can comment below with your questions and we’ll answer!
Fibromyalgia is not a death sentence.
Fibro is not a terminal disease. You can live a full life and have fibromyalgia. Your life may not be the same as before and pain management will be necessary to have a portion of your old self.
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.
You probably know by now that someone with fibromyalgia is very sensitive to touch. Many times the slightest touch or the gentlest hug can cause great pain. I have had people tap me on the arm and it felt like that hit me with a bat. This pain lingers for quite a while before my arm will settle down. This is called Hyperalgesia. I have written before about how this pain feels. But there is more to the pain than this. Fibromyalgia is a sensitivity that extends to ALL the senses.
Fibromyalgia Pain – Making Sense of Other Neurological Issues
images created in canva.com at no charge
1. Fibro and our skin
According to Very Well Health, there are actually 7 different types of pain that one can experience due to fibromyalgia. The first you may be aware of is Hyperalgesia. “Hyper” means excess and “algesia” means pain. This is when the level of pain is turned up. Messages are sent to your brain as saying the pain is much worse than it actually is.
Myofascial Pain is widespread muscle pain. It is “commonly described as a deep and gnawing soreness, stiffness, aching, or throbbing all over the body, including the arms, legs, neck, and shoulders—is a hallmark feature of fibromyalgia. This includes what is called costochondritis which is tenderness in the chest wall. I experience this just from getting an ultrasound breast exam.
Allodynia pain is an itching, burning, tingling, or numbness in the arms. Sometimes I have felt like I have a bad sunburn. Other times, I can’t stand for moving air to touch my skin. I can feel cold on a hot day.
2. Fibro affects our eyes
The way fibro affect my eyes is dryness and sensitivity to light. At times it feels as if someone has stuck a needle in my eye. Over time, it can affect your vision because you are squinting. It is important to see your eye doctor (ophthalmologist, not just an optician) on a regular basis. Don’t neglect your eyes.
3. Loud Noises are Painful to the Fibro Warrior
Noise can cause pain as well. One reason I had to stop working in the children’s department was that the noise level was too high and it hurt my ears. I can’t be in the same room while the vacuum cleaner runs either. Thank goodness, I have a husband who runs the vacuum for me!
Scented perfumes, detergents, and cleaning agents can make someone with FMS feel ill with everything from fatigue to nausea and headaches. Foods smells can also make the fibromyalgia sufferer so sick they don’t want to eat anything, or start eliminating certain foods from their diet, even if they are healthy items.
I can acquire a serious headache when women who love their perfume walk into the room. Some people cannot use anything in their home that has a smell: ie. candles, soap, air fresheners, cleaners. Attending church on Easter can be a horrible experience with all the Easter lilies.
Sometimes, spices are too hot for me. It is strange that it is random. One day I can eat a pepperoni pizza just fine. Then the next day, the pepperoni burns my mouth as if I have eaten a hot pepper. Trust me, I haven’t eaten a hot pepper. 🙂
All the Senses Are Affected
As you can see, Fibromyalgia affects all of the senses. It can be pretty frustrating and many of these issues have no way to help the problem other than avoidance. I hope this helps you understand a bit more about the Pain Warriors Plight. Come back again for more explanations.
Are You Feeling My Pain?
–Mandy
Have More Questions?
Please leave you question in the comments and I will try to answer them.
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