Everyone wants to look their very best at all times, right? For those with fibromyalgia, simply getting out of bed can be a monumental task, let alone looking “good.” Fibromyalgia take a huge toll on our bodies physically, mentally and emotionally. Over the years, I’ve experienced a few things that absolutely drive me crazy about my body. I’ve learned there’s not much I can do, so I might as well at least try not to be overly concerned about my appearance.
We asked a question “What are the side Effects of Fibromyalgia No One Talks About?” to our community “Living with Fibromyalgia and Chronic illness“. They have share their opinions with us. Few of their opinions are below.
1. fear: fear for illnesses dismissed by doctors, fear of not being believed, fear of the future. Feeling a (failure) because you can’t work when all the rest of the family are out working.
2. Hypocondria, but at the same time, assuming that new symptoms are just fibro and not getting them looked at. I never knew I could be both at the same time.
3. Dental issues. Not just TMJ even teeth that just hurt like they’ve been drilled. I mean gum disease and dry mouth and tooth decay that happen even though you take care of your teeth.
4. Desperation: Having to ask for help when you’ve been a very independent person.
5. Self-Esteem: Unable to work so loss of self worth, Unable to get dressed and presentable, Loss of feelings of attractiveness for partner, Unable to accomplish small tasks that you normally always did, so feeling useless, Self-esteem definitely hits the skids, causing depression, anxiety & suicidal thoughts.
6. Grief. Grieving the loss of my career, being the mother I used to be, having any kind of positive future, etc. Apathy. Anger. Not really living while silently wishing for death—painfully uselessly EXISTING. Feeling misunderstood by everyone which further increases isolation. The delirium from waking up every two hours all night long every night for years. Complete lack of any self esteem is an understatement. Guilt for not being the perfect wife, mum, nanna, daughter, employee… Grief for the life I had, Grief for the life I planned, Frustration that I can’t think or speak properly
7. Cramps, nausea , peeing all the time, uselessness, fatigues, anger, fear of the future, weight loss or gain, weakness, tiredness, pains , forgetting, mental issues anxiety or panic attacks lonelyness .low sex drive, low concentration, headaches chest pains foot pains food sensitivity light sensitivity the list just goes on everyone has deferent symptoms showering is a chore every things is a chore lost of vision at times lost of interest in general to everything and everyone itching burning skin.
8. Memory, Doctors not caring or giving you time. Loss of friends. Family frustration with you, since you can’t give them the attention and things you always did before. The migraine headaches all the time constant changes in vision. The stinging an burnings.
9. Feeling much older than your real age.
10. Balancing: Feeling like you are always going to fall because of loss of balance…then that leads me to more anxiety and panic attacks.
Summing up the overall answers:
It’s normal to talk about the side effects that everyone can see, but what about the side effects that aren’t seen? The ones nobody dare ask because they are afraid of the answer (and then wish they hadn’t asked the question).
Fibromyalgia is an invisible illness and this means hidden side effects.
Firstly, and sometimes obviously, is weight gain and loss. I’ve not met or spoken to one person with a fibromyalgia who’s happy with their weight. Let’s face it, few people are really happy with their weight, but having all these medications just to be able to survive one day takes a toll on your weight. Be it steroids, nerve pain drugs or even opioids, prolonged use can have a big effect. But because of our illness, exercise may barely exist, because let’s face it, if you can get out of bed one morning you’ve basically just climbed Everest. Enough said. But it’s a constant battle with medication and exercise, and certainly not a battle any of us are choosing to fight.
If I didn’t have a notebook, I would forget everything. I take it with me from room to room if need be. And I take it with me whenever I go somewhere. For me this is the most frustrating side effect. I can live with a lot of things, but the loss of cognitive ability has massively affected my life. I used to be smart. I graduated from college and always planned to get a masters degree, but now that is no longer a possibility. I look at things that I wrote in college and I don’t understand how I could ever have written them. Back then I took my ability to concentrate and write a cohesive sentence for granted. Nowadays I lose my train of thought in the middle of a sentence, I can’t complete basic math problems, I forget something the minute I hear it unless I write it down, I can’t remember names, I can’t remember words, and on my best days I can barely write a coherent blog post. I miss being able to think
Mood swings are a given, for any human being, it’s what we do as human beings, but add in severe and debilitating pain and medication, and it’s like a ticking time bomb. Everyone has off days, but when your are in so much pain, the slightest thing can make you explode, and for no apparent reason. Certain medications I have taken in the past have made me rage at times, and not having control of your mood is scary. You can almost see it happen — this switch inside you clicks and boom, look out! But in the next breath, you can be so delightfully happy, almost delirious, you forget about the bad moods, until that switch goes “click.”
Given that most of your time is spent waiting on doctors, surgeons, and everyone else, you’d think patience was a given. No. I have less patience now than I ever did, but not in everything I do. I have less patience for faffing around, being downright rude, general BS and stress. Stress being the main factor of pain in my body, I try to avoid it at all costs – which in itself can be stressful (go figure!). Of course it doesn’t always work, and I will get myself worked up which then causes a massive crash, but I’m learning to deal with things a lot better. But if we all had a little more patience with someone we know who has an illness, the benefit to that person is better than any gift.
Last night I was in agonizing pain because I’ve exercised too much this week. I couldn’t go to sleep because I was in so much pain. This is what we chronic pain patients call Painsomnia. It’s a terrible cycle of:
pain –> no sleep –> more pain–> definitely no sleep –> even more pain
The cycle just keeps going and going until you’re in such a massive flare that you can barely function. If I want to live my life like a semi normal person I have to stop the cycle before it starts, and that’s impossible to do without pain medication. My usual coping techniques (yoga, epsom salts bath, heating pad etc.) are not enough to stop the cycle they only help me cope.
Mental Health and Depression.
Of course, this is a big side effect and one that’s very easily hidden. Be mindful of the fact that that person has gone from being a healthy person, to having their life changed in an instant. It’s not an easy process, it never will be, you grieve every day for the person you once were, but how do you deal with the fact that that person has gone, and probably forever? Is it any wonder depression is a major side effect? Anxiety also comes in to play here, because not knowing how to deal with this “new” life is extremely new territory, and terrifying. Is it any wonder people can be anxious?
What was once perhaps a carefree life where you did as you pleased has now resulted in a carefully managed routine, and is such a shock to the system. Imagine having a successful career and a happy/comfortable life (as comfortable as it can be!) and then all of a sudden you become chronically ill, not able to work or provide for your family, let alone yourself. Not able to function without help, or do the things you used to. All that taken away in the blink of an eye. The lifestyle you once had has been swapped for something that you struggle to control, let alone get used to.
When you don’t feel well the majority of the time you learn to make priorities and usually those priorities are based on survival. When I’m not feeling well I drop off the map. I don’t make phone calls, I don’t initiate texts, and I definitely don’t participate in anything social. If I disappear it’s because I don’t have the physical energy to be interact with other human beings. Not being social reduces my stress levels and preserves my energy for basic tasks that aren’t optional, but it also makes me feel lonely and isolated.
Skin and Hair
Now of course you can see skin (not all skin of course) and hair, nails, etc., but through medication, tiredness, and other factors, our skin and hair can take a beating, too. My skin has changed from relatively normal to extremely uber sensitive. If something even brushes past my skin, I have a reaction. My face is now full of spots, which come for a couple weeks holidays, then disappear, then re-visit like never before. Reactions to medications can cause terrible skin problems. Hair can also fall out at a quicker rate than it grows.
Not everything is about sex if you are in a relationship. There are of course plenty of other ways to be affectionate and loving with your partner. But what if having sex is painful and hurts you — should that put you off ever having sex again? Should people who have chronic pain/illness never have sex again? I don’t think so; just because we are in pain doesn’t mean we don’t have the same needs like any other person. It’s all about adapting and finding what works, and what doesn’t aggravate pain levels. Just have fun experimenting!
I’m broke, like all the time. The never-ending medications, the lotions and potions, treatments, travel to and from appointments, everything adds up. And if you can’t work it’s even harder. It’s a gift that will take pressure off. It’s very hard for me to admit I need help financially. I do not like asking anyone for money or help, but that’s something I need to work on — my own pride. Worrying about money only adds to stress, and stress makes things worse.
There are so many side effects — side effects that seem to be taboo. But why? None of the above points need to be hidden or not spoken about! To those who have a loved one with a chronic illness, all it takes is a friendly and supportive ear to be there for a person, and have some degree of understanding what that person has to deal with.
Look beyond what you can see, and search for what you can’t.