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How to explain the pain?
17 Replies
fibrofog - November 29

I have been trying, in vain I might add, to explain the pain of fibro for years and people just don't get it!! How do we impress on people just how bad it is?
I have tried the flu explanation, the clothespins on the fingertips, etc. I'm to the point that I've nearly given up on trying. Any ideas?


fishingflorist - November 29

Don't bother, unless you have it you don't understand. what I have found to work (if they really make me mad) I have a list of symptoms that I experience that I let them read. Usually that shuts up anyone. :)


Fantod - November 29

I've also used the workout from hell at the gym explanation. People just can't wrap their heads around the fact that it is possible to feel that bad every single day even with medication. Take care.


Stacey373 - November 29

I try to explain how it feels to people I know and I agree...I can't explain it the right way to make them understand just how bad it is. I think I've gotten to the point that I really don't care to explain it anymore.

My biggest problem with this is I don't think I explain it the right way to my doctor. How do you explain all of this to them????

I'm going to go see a new doctor pretty soon and I HAVE to make sure he completely understands during that one time visit....any suggestions?


Rahiin - December 2

Hi fibrofog. I also have had the problem of trying to accurantly explain to someone how it feels to have fibro. Everyone's experience with fibro is a lil different, so the feelings vary slightly.
I describe mine as "shooting, stabbing, burning, acute, migratory" pain. Those words invoke certain images that usually gets the point across.
However some people think that description is too abstract. So if I have to dumb it down, I say its like getting hit with a baseball bat over and over again, or after a day of playing football. Most of the guys will know how it feels after playing hours of tackle football, for the ladies, the explanation that Fantod described is usually sufficent.


solanadelfina - December 2

It depends on the day. Usually, I'll say it's like having an invisible stalker armed with a baseball bat, a needle, and a jar of acid and letting me randomly have it with one.

On a bad day, (as in going home early), I'll usually say it feels like being attacked and chewed by dogs or getting beat with a metal bat without getting a single punch in first.

(These are maybe a little graphic, but they tend to get the point across quite well.)


fibrofog - December 3

Even when I read the available literature, the description is generally "widespread pain", blah, blah and that just doesn't do, in my opinion. I agree with Rahiin that we have to be more descriptive or more blunt in order for people to get it! Maybe that's why people have such a hard time understanding...maybe the terminology isn't strong enough.

Fishingflorist--I'm working on my list of symptoms! I think that is a fantastic idea!


#1angelswife - December 3

Hi fibrofog,
I have the same challenge. My husband also doesn't always understand why I can feel good one day and crappy the next. I'm still trying to figure that one out!
One real bad day, after I'd heard "But what does it FEEL like?" from my husband for about the hundredth time, I lost it and I socked him really hard. Then I dug my knuckles into the bruise. When he hollered I asked him if he felt that, and he said "hell yes!" Then I said, "Well that's what my whole f---ing body feels like." Not very elegant, but it did get the message across. He has never asked again.
I obviously wouldn't use that all the time. And I did appologize later.


Fantod - December 4

#1angelswife - Good for you! That was a very good and, I might add, realistic demonstration of how it feels to have FMS. Too bad we can't "treat" a couple of the doctors we've all had bad experiences with to that example.....LOL.


fibrofog - December 4

#1angelswife--Outstanding! I wish I had thought of that when my (now ex)husband pulled the same crap on me! I don't know as though I would have apologized for it either. It SUCKS when your spouse doesn't, can't, or won't get it. I'm sending good thoughts and energy your way.


#1angelswife - December 4

Thanks, fibrofog---he IS interested in learning about it now but it's still a slow process. Most of the time he thinks if I don't talk about it then it won't bother me. (I wish it was that easy!!) But he does try.


DaniBelle - December 4

It's almost impossible to explain the pain. I was diag. almost 6 yrs. ago. Having to go through chiropractic adjustments after a car accident late last year, the over-sensitivity to touch and manipulation threw me into the most painful 3 wks. I've ever experienced. One of my ribs near the shoulderblade was slightly pulled out, causing my whole body to go into an extreme flare. I went to the ER 3x in a row and nothing they gave me helped with the pain. I ended up losing 20 pounds in less than a month and only slept about 2 hours per night. The only thing that helped were epidurals into my spine. My pain specialist (been treating me for last 7 years) said my whole body had fibro 'knots' all over, esp. in my back. The reason I went to the ER (terrible pain) was because I was experiencing costochondritis (chest pain associated with fibromyalgia which is an inflammation of the cartilage that joins the ribs to the chest bone). I also had abdominal pain and I was numb from my chin down to my abdomen - about 1/2 inch from surface of my skin, of course I could feel everything below the surface. The problem is, no one understands the nature of this condition, so other 'specialists' ask if you have anxiety attacks, overexercised (I wish), etc.. My husband finally accepted that this is REAL after my pain mgt. doctor said it was the worst flare she'd ever seen. For years, he said the pain was 'because I didn't exercise like I used to' and because I took pain medication (???), on and on. I think the mental anguish, i.e. guilt, not being able to socialize, etc. make the condition much worse. I can't travel in car or plane very know how it is. I hope people become more understanding real soon, because there's too much physical suffering, why should we have to deal with the naysayers!!!! We need support!


Auvonto - December 6

I hurt so much in so many differant ways that I just sound petty and stupid trying to explain. oh today my armes hurt oh now my legs and ouch dont hug me like that. man i just cant keep my balance. oh i see youre walking with a cane today. dag nab it my head hurts. fingers cramping up. now my back hurts.....sheesh feels like bruise, like i walked 20 miles and ran half the way, feels like someone starched me, pain and burning down my arms and legs. like i picked up a 200lb whatever......uggh rant and vent sorry. i hope one day we wont have to explain. we can just say oh i have fibro.


#1angelswife - December 6

Hi Auvonto,
Sorry you're having a bad day. I know what those feel like. (((hugs))) Hope you feel better soon.


isitfibro - December 8

So glad I found this site and this post! I've had so many of these symptoms over the past 3 years and my diagnosis would always begin with "unspecified." I even remember going to the Dr once and telling him I just didn't feel good and couldn't explain it. He diagnosed it as "malaise," but I think that might have been one of my first symptoms.
My regular Dr moved quite a distance away so I didn't know who to turn to; somone that wouldn't just dismiss my symptoms. I found a practice last week that is Family Practice and just about every specialist you can name. I went in because of pain in my ribcage, that I didn't know until last night, was another symptom of FM. I did mention to the doctor that I've been to other drs for different symptoms and after doing my own research, realizing that many of my symptoms were that of FM. Now, I'm afraid that she may think I'm making things up just to get a diagnosis!
I haven't even tried to explain my suspicion of FM or FM itself to my husband. He's the type that downplays and dismisses any ailements I have by just praying for it. I believe in the power of prayer but I want some understanding as well!
I apologize for the long post but I'm just excited to find some people that understand.


axxie - December 8

Feel like a Mac Truck hit me, it hurts...
Chronic pain I'm in a world all to myseld, the simple things in life are no longer simple. In fact, life itself is no longer simple.
Pain moves from being an unwanted guest, an occasional guest intruding in my life, the pain is like the driving force behind and nearly all my decisions. My daily choice is governed by the need to survive mentally, physically and emotionally day to day. I'm on a constant battlefield and I more often I'm the loser.

Acute, short term pain has a face we recognize ours isn't in that, it's chronic pain, it's exhausting in every way possible, it's robs you of physically, mentally, emotionally, spiritually and financially. CHRONIC PAIN ROBS YOU OF FAMILY, FRIENDS, JOBS AND RELATIONSHIPS AND EVEN YOUR LIFE FORCE.
explosive pain, burning, wisespread, not curable pain, burning accompanied by overall flu-like. I sometimes call it, Central nervous System pain, a double whammy of pain.


axxie - December 8

The language of pain, pulsing, throbbing, pounding, shooting, prickling, stabbing, lancing, elecrical, sharp, pinching, pressing, gnawing, cramping, crushing, tugging, wrenching, hot, cruel, vicious, killing, blinding, intense, unbearable, spreading, radiating, piercing, agonizing and torturing all describe different types of intense pain.
Tingling, itchy, smarting, stinging, dull, sore, aching, heavy, tender, taut, tiring, exhausting, sickening, suffocating, frightful, annoying, troublesome, miserable, tight, rigid, numb, drawing, squeezing, cool, cold, icy, and nagging are other words to describe different kinds of pain.

The pain brings on, vomiting, shaking, distractibily and inability to concentrate.

When you talk to your doctor ask him, do you believe that I have this pain?, Do you undersand the severity and the disrupting influence it has on my life?



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