10 Things Not to Say to Someone with Fibromyalgia

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edited March 2015 in Awareness

Fibromyalgia article: 10 Things Not to Say to Someone with Fibromyalgia10 Things Not to Say to Someone with Fibromyalgia

"It’s not surprising that people struggle to know what to say." Sarah shares her top 10 things not to say to someone with fibromyalgia.

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Comments

  • jennijenni Member
    Hi, I have been having these cramps in my head and jaw. It causes severe piercing pain. I have also been having a lot of dizziness and will pass out sometimes. I have also been diagnosed with POTS Syndrome. Does anyone else get this? I don't know if I should be concerned or if its related to fibromyalgia..
  • Hi Jenni,
    I occasionally have similar pain in my jaws. I have read that sometimes TMJ can be associated with fibro. I also have the dizziness although I haven't had it so severe that I have passed out, more just light headedness (not to be confused with my airheadedness)
  • pcakepcake Member
    @jenni yes, ive had this same jaw/tmj pain for as long as ive had fibro,, almost 20 yrs now. I found myself clenching my teeth due to pain, anxiety and restlessness. Grinding, chipped teeth, ear pain and bad headaches were common. I wear a mouth guard every night and it helps SO much. Occassionally, "check yourself" by being aware if you are clenching. Massage those mandibular muscles or use moist heat and by slighlty resting your tongue on the roof of your mouth will help release those tight muscles. Acupuncture also helps wondefully!! Fibro has taken over every aspect of my life. I cant work, play, socialize normally or carry on any sense of a normal life. It sucks! But, I hope this small bit of info helps.
  • I have fm since 99 today is a bad day lots of pain and of course cant sleep
  • stonestone Member
    Hard to cope with. Unless you deal with it you will never understand it
    .No need to try to get people to understand. Just hope they never experience it. Weather is a big factor .
  • beezybeezy Member
    My personal favorite is, "SNAP OUT OF IT". like I really could.
  • HI MY FIBRO FRIENDS,
    I AM DONE TRYING TO DEFEND MYSELF TO THOSE WHO WILL NOT UNNDERSTAND UNTIL THEY EXPERIENCE IT THEMSELVES!! Most of the time I feel like I am a Prisoner in my own Home they don't egt it & Harsh words come out of the ones we love Most due to them not under standing then if you do say something then they think your to fragile & you never get invited anywhere all Because I explained a situation I would never want anyone to ever have!!
  • amy79amy79 Member
    After cooking dinner and almost passing out, I laid on the bed. Now the kids are running around and my husband is mad at me because I (to him: won't) can't get out of bed and help him. He always has something nasty to say about it. He refuses to beleive its a condition. Its all in my head and I need to get off my lazy @$$ and do something. Even though he has seen me collapse, pass out, fall into things from dizziness, shake uncontrollably from severe pain, etc., its just because Im a hypochondriac in his eyes. This is an all day every day struggle for me. It's going to end in divorce, just a matter of time.
  • artsyartsy Member
    I have had terrible jaw pain, jaw swelling and even swelling in my neck muscles. I never thought to connect it to my fibro until now! I find my self massaging my jaw and neck on the left side constantly. the left side is where most of my pain is concentrated. does everyone else have one side or area that is worse? or is this just me?
  • @artsy Hi, I was stricken with TMJ not long after being diagnosed. I went to a specialist, referred by my Dentist. You didn't mention if you have a significant other, but the simple remedy for my issue was ......told to me by specialist "trade sides of the bed with your husband". I thought, sure, ha ! But it worked !!! TMJ gone !
  • There's always my favorites...."I think you need a 2nd opinion." I have now seen 30 doctors...I'm pretty sure I've had quite a few second opinions.

    "Things have changed since you were diagnosed...I bet there's a cure now." Well, not according to my fibro doctor...there is no cure and do you honestly think I don't read every article I can find to keep myself updated on this??

    "Maybe you just need to walk more, my mom had it and was cured by walking"...then all I can say is either good for her or she didn't have fibro in the first place (found out later she had never been diagnosed."

    No one realizes we're in enough pain...these added "digs" don't help the situation any in my opinion. Some days I feel ok and can do things....some days I'm not able to get out of bed (I still do) but it's with a TON of pain and effort!

  • I'm just so proud my hand doesn't auto-slap stupid people anymore...
  • kw69kw69 Member
    I also have bouts of dizziness. Sometimes my scalp and hair hurts along with my neck pain. Anyone else have hair and scalp pain? I have colitis and it seems to be worse when the Fibromyalgia flares. Karen
  • After cooking dinner and almost passing out, I laid on the bed. Now the kids are running around and my husband is mad at me because I (to him: won't) can't get out of bed and help him. He always has something nasty to say about it. He refuses to beleive its a condition. Its all in my head and I need to get off my lazy @$$ and do something. Even though he has seen me collapse, pass out, fall into things from dizziness, shake uncontrollably from severe pain, etc., its just because Im a hypochondriac in his eyes. This is an all day every day struggle for me. It's going to end in divorce, just a matter of time.
    After cooking dinner and almost passing out, I laid on the bed. Now the kids are running around and my husband is mad at me because I (to him: won't) can't get out of bed and help him. He always has something nasty to say about it. He refuses to beleive its a condition. Its all in my head and I need to get off my lazy @$$ and do something. Even though he has seen me collapse, pass out, fall into things from dizziness, shake uncontrollably from severe pain, etc., its just because Im a hypochondriac in his eyes. This is an all day every day struggle for me. It's going to end in divorce, just a matter of time.
  • @Chelle that is the same way my l loved ones make me feel at times
  • Don't you hate hearing "oh its just a way of getting pain meds" . also those who do not have a clue what the wide spread pain feels like. Sadly when they end up with flu like aching I say well imagine I deal with that familiar pain on a daily basis.
  • It's exactly how I feel. Pol think we can do everything and nothing is wrong
  • just recently had a Rheumatoid doctor tell me it was all in my head and that i needed to quit smoking and destress ....
  • and as far as pain meds , I cant ever get them so its not about the pain meds for sure
  • Ya it hurt & stresses u when the people you love treat you like your fine, your faking it. You were fine an hour ago.
  • Ya it hurt & stresses u when the people you love treat you like your fine, your faking it. You were fine an hour ago.
  • AngelicaAngelica Member
    edited April 2015
    People that don't know about it are tired of hearing it. If they would only try & understand what we go through on a daily basic Our life won't be so stressful. The thing that makes us hurt more. Hello people get a cue.
  • I was just diagnosed at the age of 51. I could not understand why, at my age, i was in so much pain and could not sleep. I was taking my husbands Vicodin, the pain meds dont even work. Neither do sleeping pills. I got yelled at by my Dr. one time for taking Xanax and Ambien at the same time. Then she put me on Gabapentin which has helped a lot and i keep as active as I can. I go to the gym 3 mornings a week and lift weights and do the elliptical for a half hour to an hour to keep flexible. I have a 60 pound border collie mix who has to be walked every day no matter how bad I hurt and/or feel. I have good days and bad days and really, really bad days. My lower back is in agony all time but I try to ignore it until i cant anymore. My husband is an angel and can tell when I just cant do it anymore and then he'll make me rest. I am determined not to let this beat me!!!
  • I have been diagnosed with fibromyalgia since 2001, I was always a Type A, always busy, tenacious. It stopped me , I was confused and very ill. I tried medication, massage and diet. I found my best defense was to never get over tired , to sit , rest and hydrate for twenty minutes every two hours. To nap daily and to never overwork. I need rest, excercise and Whole Foods . Drink coconut water and try to be calm. These things did more for me than any drug. I know how horrible you feel. Good luck.
  • Like Many, My journey was a long and dark one...
    After years of suffering & dealing with skepticism & visiting numerous Specialist who deemed me unfixable (hypochondriac)! I finally found a Doctor who thinks outside the Box! And I have a diagnosis! I was so releived when he told me, I cried for days!! Then it sunk in and I wanted know everything, so I began my research! I decided because of the stigma attached to Fibromyalgia, I would only tell people that needed to know, for My welfare. Anyone else, I would just say, I have a muscle & joint disorder, my strength comes & goes! If I know it's a bad leg day, Sometimes I joke & say, "So if you see me stumble or fall! Please help me back up, I'm not drunk" , Lol!
    People seem to understand & are less skeptical of that explanation, I think because people can relate with muscle pain or sore joints. Also by pre warning them & joking about my situation, people are more comfortable around me & they understand why I act or walk differently sometimes without having to explain! Also, I don't feel like I drive people away with the doom and gloom of it all!
    Don't get me wrong, I'm not super human & I have very bad days when depression & pain are my best frenemies! I just refuse to be treated badly by people who are uneducated about my condition but, still feel they can pass judgement on me... I have enough pain in my life, I don't need any from ignorant people who's opinions don't help me mentally or physically.
  • @willowmay03 good for you. You are blessed to have such an understanding, patient husband. Be gentle with each other, chronic pain is a marathon. You have the support and attitude to keep putting one front of the other and be there for each other. Somedays will be better, some worse, some tolerable. Love each otther through it. Prayers from a woman who understands 100%.
  • I had a Rheumatologist pat me on the head & tell me I just needed a good night's sleep & prescribed a muscle relax as a sleeping pill! This was after spending 30 seconds poking my arm & shoulder. Needless to say I never went back to him!
  • I also had my pcp tell me that I hurt because I smoke. Because my bones weren't getting enough oxygen so they were hurting! I seriously laughed, I thought he was joking. I know smoking is unhealthy & all that entails but seriously???!!!!
  • ariari Member
    Its funny you read on here the "remedies" people have found and I am so glad you have found things that work for you, but keep in mind fibromyalgia is a progressive disease. Don't be surprised if some time in the future you find remedies that work now quit working in the future. I have had this illness since I was 3 years old and had a terrible case of the measles. My mother termed it rain pains because it was so much worse when it rained. No doctor could figure it out. My mother spent endless hours rubbing my legs, arms, and legs with rubbing alcohol while I wailed in pain all the way up to age 10 or 11. Thats when I started riding and showing horses and taking pain meds. The pain is still with me and now it is accompanied by a lot of other dreadful things and I am 58 years old. I was officially told of the diagnosis on 9-11-2003, when I was seen by the tenth pain doctor I had been sent to. Apparently I had been given the diagnosis a few years earlier but no one had told me. Then I entered the world of cynics because no one believed it was a real diagnosis and frankly I was in the medical field and I believed it was a trash can diagnosis (that is what they told people when they didn't know what was wrong with you). I still kind of believe that. But the one thing I didn't see on this list is what my daughter tells me all the time, it is because I don't eat right. I need to eat clean. I need to try juicing. I need to eat a Paleo diet. On and on and on. That is the one remedy I am so tired of.
  • @madamC If I was able to use my numb and painful hands, I would personally slap a few people!

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