10 Things Everyone Should Know About People With Chronic Pain

10 Things Everyone Should Know About People With Chronic Pain

This is an open letter to anyone who knows someone with a chronic pain illness. From the perspective of someone with a Chronic Pain illness, these are ten things we want you to know about those of us, who suffer from anyone of a number of chronic pain diseases.

1. Why We Cancel Social Engagements:

People with Fibromyalgia and other chronic pain illnesses, often suffer anguish from having to cancel plans so frequently. We don’t want to, but we do, that is if we are brave enough to make plans in the first place. Think for a minute, what it might be like to have a chronic pain illness. To a large degree you become a shut in. When you move around with chronic pain, it sucks the energy out of you. Also, the more you move the more it hurts. When you’re a shut in you are willing to do whatever it takes to get out and be social. But sometimes you just can’t. We’re sorry, more than you know. All we ask is for patience and understanding.

2. Chronic Pain Is More Than Just An illness:

Saying that fibromyalgia or any other chronic pain condition is an illness implies that there is a cure or that we should feel better after a couple of weeks of medicine and therapy. The important thing to remember is the key word chronic. The word “Chronic” means “persisting for a long time or constantly recurring.” Chronic pain is not like having the dreaded achy flu with a fever for a week that suddenly disappears one morning when you wake up and you feel just fine. We wish it worked that way. We pray to wake up some morning to find our chronic pain gone and have a lot of energy. But the word chronic means that it will persist for a very long time, likely forever, especially it your chronic pain has a more detailed diagnosis like fibromyalgia, chronic fatigue or neuropathy.

3. How Are We Doing?

If you are kind enough to ask “how are you doing?” or “how are you feeling?” and we act kind of funny about answering you, it’s because it’s complicated, or because we wonder, do you really want to know? Or because we get tired of saying we feel lousy. Don’t be easily deceived. We may say “we are fine.” We may be lying or we may be truthful. It’s hard to say because is depends on the time of day when you ask that question. Our condition can vary from one hour to the next.

4. How Can You Help Us?

If you’re interested in helping us, it can literally be as simple as sincerely validating us. Be genuinely sincere when you say you understand. We can spot phonies a mile a way. We would like to have your honest acceptance of who we are with a chronic pain condition and be patient with us.


5. Important Things to Understand About Us

Things can change hour by hour with for those of us who suffer from chronic pain. So please bare with us.

We are victims, we didn’t ask for a chronic pain disease, who in their right mind would?

We are as independent as we can possibly be. It may not look like it considering how much help we sometimes need. If you should happen to see a smile on our face, please consider how much energy and effort it is taking. We would give anything to not be sick with chronic pain. Anyone who enjoys pain is insane. It may not look like it, but we try to live the best, the most normal life we can. It may not look like it but we are. We need a lot of sleep because not only does pain hurt, it wears us out and makes us tired.

6. Chronic Pain Illnesses’ Are Real

Most chronic illnesses now have an identifiable name like Fibromyalgia, Chronic Fatigue, Neuropathy, Trigeminal Neuralgia, IBD, IBS, TMJ, and Gout to name a few. Just because we don’t look sick doesn’t mean we’re not sick. We can feel crippling pain and hopelessness and look fine on the outside.

7. Don’t Judge Us

You may see us clean out our car or do a load of laundry and think we are faking a chronic pain illness. The truth of it is that the majority of our time and for some, all of their time is spent in pain. But most of us have a few good days and because we are not lazy we try and do as much as can of our few good days. We have to pace ourselves on good days so that we don’t have to pay extra on bad days. Some times we choose to over due it on good days because we just want a quick taste of being normal. We know we will pay a price for it the next day but sometimes we think it is worth it. Another point to make is just because you haven’t heard of all the pain related illnesses doesn’t mean they don’t exists.

8. Sometimes It’s Hard to Explain How We Feel

There are so many painful sensations and accompanying emotions and brain fog it’s often hard to put how we feel exactly into words. But trust us when we say, we feel terrible physically and emotionally.

9. Medication

There is a plethora of medication and pain relievers out there as options to manage our pain. But even with all the proper medication we still feel pain. Pain meds don’t take away all the pain. Sometimes the best we can hope for is a degree of relief, but seldom, if ever, does medication take away all the pain.

10. We Are Not Hypochondriacs

We are not making this chronic pain stuff up. There are some people that really are hypochondriacs but if you think we are, take a look in our medicine cabinet or observe us for a few days and see just how fake are illness isn’t.


We don’t want pity, and we don’t want to be looked down upon. We want respect, validation and trust. We really are sick even though we don’t look sick. Ask yourself, who in their right mind would want to be sick with chronic pain for their whole life. We don’t.

Not All Fibromyalgia Symptoms Are Fibromyalgia Symptoms

Not All Fibromyalgia Symptoms Are Fibromyalgia Symptoms

Most people discover that they have fibromyalgia after a long bout of chronic pain. Then it usually takes a year or more to get it correctly diagnosed. In the meantime and for the next several years they discover additional symptoms of fibromyalgia like chronic fatigue, fibro fog, IBS, chemical sensitivities, dizziness, impaired motor skills and the list really goes on and on.

I’ve heard that there are more than sixty symptoms related to fibromyalgia. I haven’t researched that statement yet but here are a lot of additional fibro symptoms to consider such as Chronic muscle spasms, or tightness, chronic fatigue and decreased energy, Insomnia, 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.

Even more fibro symptoms are 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.

not_all_fibro_symptoms_are sympRemember, there are countless more symptoms of fibromyalgia. But here is the point, when you notice a new symptom don’t just assume that it is a fibro symptom, at least get it checked out before assuming anything.

My first example from my decades long experiences that illustrates this concept: I have been having problems recently being way more fatigued than usual. I went the doctor to check it out. It felt a little more than traditional chronic fatigue symptoms. To make a long story short, I found out that my heart rate was hovering in the mid 40’s. Sometimes and low as 40. That can make a person very sleeping. I am currently being monitored by a Cardiologist.

The second example is related to dizziness. Dizziness can be a symptom of fibromyalgia but it, like most of the symptoms of fibromyalgia can by symptoms related t other things. Occasionally I have dizziness with fibromyalgia. In the past I have had a few inner ear infections. I started getting much more dizzy than usual. Went to the doctor to finds out I have an inner ear infection and fluid build up behind both ear drums. I was able to get some Meclizine to help with the dizziness. I was told to take Mucinex to help get rid of the fluid.

Ten days later I went to my doctor again and the fluid was gone behind one ear and the other ear was infected. Got an antibiotic and after three days I am seeing improvement.

If I had not gone to the doctor then I would have got really dizzy and sick and suffered longer than needed.

My third example is that I take medicine for IBS, irritable bladder, anxiety, muscle spasms, to manage fibro symptoms. Always treat the symptoms if they are a part of fibro or not. Chronic pain is more than enough to deal with, manage your other symptoms the best you can.

Troy Wagstaff ©

This is not medical advice. This is for informational purposes and should not be considered medical advice. Consult your doctor for any questions about your health.

Fibromyalgia is Real – A Poem

Fibromyalgia is Real  – A Poem

Fibromyalgia Is Real

Fibromyalgia Is Real

This is the first fibo-awareness post I have posted from CallahanWriter that I didn’t write. I met Tabatha Schulz on a Fibro group on Facebook Fibro Family Christian Support Group. She agreed to let me post this delightful poem on my blog. Enjoy.

What’s this you say? Fibromyalgia’s not real?
How about you step into my life and just see how real it feels!?
You couldn’t handle it, not even for a day!
This is my life, the pain never goes away. The unending pain, the stiffness is real!
The leg cramps, hands trembling, How does it feel?
My stomach is wrenching, My ears ringing too I’m fatigued and have insomnia… How does that feel to you?

Fibro Poem

Fibro Poem

The IBS has my stomach tied up in knots, and nausea too I wish this would stop!
The pain in my joints is totally insane, Am I even going to be able to walk today?
My skin is on fire, and my muscles burning in pain!
My head hurts and my mind is foggy again.
Dizziness, depression my list could go on… Living with this illness is going to be life long.
So how does it feel to be in my shoes?
Next time be careful the words that you choose… See Fibromyalgia is VERY REAL!
Now you know how our daily life feels.
So be kind and understanding, don’t hurt us with words
We just want understanding and our voices to be heard.

Tabatha Schulz ©

Used by permission

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