That is my question…I have been recently diagnosed and my FM flares literally have me walking with a cane on some days for stability. So of course I get asked the question “What happened to you”, “were you in an accident”. Some people at work who I consider close colleagues, I tell them that I have been diagnosed with FM and that from time to time they will see me walking with a cane at work. But it has become so obvious as I now walk at such a slow pace down the hallways even without a cane. Everyone can’t figure it out and want an explanation. When I mention “Fibromyalgia”, they immediately think about the Lyrica commercial on TV. Then I have to explain that there are many forms of FM and that everyone has different levels of pain.
For me, I have two types of pain. The first consumes 90% of my body. Every morning I wake up feeling like I have been beaten with a baseball bat. All my muscles under my skin feel bruised. For this pain I was first put on Lyrica (30 pound weight gain in 2 months!), then Cymbalta (horrific nightmares), and now Savella. Only the Savella has brought me any real reduction in my pain level but I have only taken it for 3 days now so I will keep my fingers crossed.
The second pain I have are like stabbing/shooting pains that feel like a double serrated edged knife has been thrust into certain parts of my body. Most of the time the knives are in my lower back or straight in the sciatic nerve and then the pain travels down each leg and then explodes out my kneecap. This pain also frequently shows up in my neck and feels like someone has plunged screwdrivers into my neck. This second pain has prevented me from getting a full nights sleep for about 9 months now. I wake up 3-6 times a night with excruciating pain that makes me get up and deal with it. I have tried Ambien and every OTC sleep aid to no help. So I have been put on Oxycotin extended release tablets two times a day to try to take the sharpness out of the waves of pain when they come. I am also on Oxycodone immediate release tablets for when the pain hits. However, it has only been 4 months since I was first diagnosed and they are still trying to figure out what meds will work best for my pain.
But back to my question. I am tired of explaining this to people and the majority of the reactions are not of the understanding type as they do not know anything more than what the Lyrica commercial has taught them - Which is nothing. They assume it is curable as why would there be a pill available if it wasn’t.
Can anyone share with me how you explain FM to others because what I am saying is not working.
I don’t explain…unless it’s someone I know on a friendship level. I’ve sent youtube videos to folks to help them understand and that always works.
If someone loves you then they’ll take the time to do research for themselves. I’ve had some do that. Their concern always blows me away.
Then there’s the old: “My body hates me…” said with a chuckle. You have to choose who you bring into the understanding realm of your illness. Be thankful for the ones that understand and let the others go.
I think you explained it pretty well in this discussion, Kas. The problem isn't in your words; it is in the ears of your hearers. You can lead a herd of horses to fibro, but you can't make them get it. Next time, just give them the link to this site, and let them read for a few days. Then, it might dawn on them...
I ask people to remember when they’ve worked out or done some physical activity that left them with the “burn” feeling in their muscles. That feeling the exercise enthusiasts are always telling you is what you should strive for. Then, I tell them to imagine that feeling from head to toe 24/7 with no relief whatsoever. Then imagine touching one particular point on their body (while feeling this “burn”) and it sending out shooting pain in all directions. I also tell them that my doctor has told me that fibro seems to be related to MS--THAT they can understand.
Yep, that pretty much shuts down the questions on this LOLOL
As far as your back goes, I've had similar issues with the muscles in my back. Apparently, the nerve irritation from fibro had the muscles in horrendous spasms. To the point that the spastic muscles were squeezing my discs and they were herniating. A combo of Gabapentin and the muscle relaxer aspect of Xanax slowed this down.
I give them a sensation that can relate to. I ask them to remember the day following working out first the first time. When that sensation returns to their remembrance then you say with great emphasis placed upon each time marker. “That is the way I FEEL EVERY MORNING, EVERY AFTERNOON, EVERY EVENING, EVERY NIGHT; 24 HOURS A DAY, 365 sometimes 366 DAYS OF THE YEAR!” Make sure you put that pain to work for instead of it working against you!!! Of course we (The Fabulous Fibros) know there is no pain similar or like ours but it gives them a sensation that causes them to relate.
When someone asks me what does it feel like to have fibromyalgia, I tell them it feels as if a herd of elephants ran me over while I was sleeping, every single day I have never been asked twice. M
I try to stick to the basics when I describe it...so my choice of words is... it feels like thrown off a cliff while you sleep and waking up just as your body slams full contact with a rocky pavement below now imagine some days the you hit sand, others dirt others gravel thats what fibro is like for me some days some parts hurt more than others some parts i feel like ive got my skin on fire from the tingling other days i know the minute i move the pain will begin so normally as i begin to rouse my husband pushes my pills into my hands so by the time awareness hits me with the force of the fall all the way down i have already begun fighting back
My Adult Kids (all boys) asked me what it was and knowing my boys I knew I had to explain it in the shortest time frame possible before they were off on another subject . . . My answer was simply "It's like having arthritis in your muscles and flesh instead of your joints" - This answer instantly resonated with them as they witnessed both of their grandmothers get progressively worse with arthritis and they immediately understood the level of pain I experienced on bad days. So now, when I am asked about it, that is my answer. It may not be 'technically correct' - but I am certain most of us will agree the picture of pain it portrays is close . . .
I would tell them you have an autoimmune disease that has flare ups, and that autoimmune diseases aren't easily explained because the symptoms are usually very strange. You might mention Lupus or the aftermath of Lymes, (which is caused by a spirochete, but causes an autoimmune reaction in some people afterward)
My basic answer is: You know how your body feels when you have the flu? That's how I feel every day, on a good day.
Sometimes I add in: Five years ago My doctor told me I had the body of an 80-year old, so add in all those age related issues.
If someone gives me one of those, can't you just do yoga or exercise or something, then I go off with every little symptom, then ask them if they could go do 'their suggestion' with all that going on.
when someone asks me "what's fibromyalgia?" i tell them this: it's something i wouldn't wish on anyone. imagine being in pain all the time...for no reason at all. i could be fine one second, and hardly be able to walk the next or be able to move, and sometimes so tired i can barely stay awake and sometimes i can't sleep at all. so fibro is pain that we can't control.