The Beginning of My Story

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Pain:

Will change your life.
You will become stronger than you ever imagined.
Your heart will expand with compassion.
You will find true friends who will be your support.
Your priorities will focus on life’s real purpose.
Your new world will provide endless opportunities.
You will find comfort in balance and patience.
Your resilience will intensify.
And you will be nourished by the power of faith.

Lynne Matallana



April, 2014

My first memories of pain were when I was about seven years old. I remember waking up in the morning and struggling to get up out of bed, all the time wondering why every part of my body felt as stiff as a rock. The house was always cold and I would scramble up the hall to the floor heater where I would turn my backside to the iron grate on the floor and start to feel the warm heat make the muscles in my back feel like they were coming alive again. Yes, the pain was agonizing, but what was worse was I wasn’t supposed to talk about it! I had been told that there was NOTHING wrong with me and that actually the pain was just the fact that I didn’t want to go to school or I wanted attention or I was a “H-y-p-o-c-h-o-n-d-r-i-a-c”. A Hypochondriac!? I didn’t even know what that word meant, but I knew it wasn’t something I wanted to be!

So I was very careful never to talk about my pain. I knew that I loved school and I got plenty of attention from my teacher and friends. There were Barbie, and Mike and Judy and Peter and Jim…oh and Kyle and Devra. We would skip to school, jumping over the cracks (just to make sure that we wouldn’t break our Mother’s back) laughing and talking a mile a minute. My pain wasn’t as bad when I was with my friends and doing things like playing hop scotch or four square. I didn’t know it at the time, but many of the same things—being around my friends and being outside getting exercise, still work to help reduce my pain today, but now I don’t have to feel as embarrassed as I did back in elementary school.

I never was quite sure why I wasn’t supposed to talk about my pain.  I think it had something to do with the fact that pain was a sign of weakness. But that didn’t make sense because I wasn’t weak! I hurt day in and day out and I never bothered anyone by complaining! Ok, once in a while I would have my picture taken and I wouldn’t smile, but it’s hard to stand still and smile when you feel like someone has just dropped you off a ten story building. NO! I wasn’t weak and I wasn’t a “H-y-p-o-c-h-o-n-d-r-i-a-c”! I just hurt all the time.

Lynne at Disneyland age 5

 


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About the Author:

The National Fibromyalgia Association has been serving the Fibromyalgia community since 1997.
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Comments

  1. Lisa aguilera  June 2, 2014

    Thank you so much for starting the fibromyalgia awareness sight and the national fibromyalgia association. When I was first diagnosed I didn’t understand what was happening to my body. Thank goodness there was somewhere I could go to find understanding.

  2. DeanLynnLongo  June 3, 2014

    I know exactly what you are talking about. I was told the same thing. I was 39 when I was diagnosed after dissection and fusion of c6&7. I lived in a recliner for 2 yrs. I went from super Mom, super nurse (I worked in Nursing Homes for 20 yrs), super Sunday School Teacher for the 4 year olds, to excruciating pain every minute. I was a single Mom and my 10 year old daughter became my caregiver. I still went on field trips. DO NOT RIDE ON A SCHOOL BUS FOR 45 mins WITH A CERVICAL COLLAR ON!!! No matter what you are always a Mom even if your daughter has to wash your hair! F.M.-MPS -Sjogrens -celiac etc. etc. Takes your identity away and leaves nothing but empty pain. It is getting very hard to fake it now. I often have to grab people to help me walk. I always dress owners very bright clothes, that way people are too busy looking at my dress to notice that I have a death grip on the chair.

  3. nfadmin  June 17, 2014

    so sorry about your intense pain. I hope you will have a less intense day of pain tomorrow, and the next day and the next day…hugs to you!

  4. Katie!  June 17, 2014

    what can you do to make your husband aware of your pain? He knows I have FM but neglects my needs. I can’t get better with the stress he causes me. He has not hugged me in 15 years. I just retired after 30 years of teaching…and I could not afford to…our daughter starts college in the fall, but the FM was so bad, I could not go another day. Thank God I made those 2 excruciating years. I will say, people like us should congratulate ourselves, take ourselves out, celebrate ourselves for being so damn resilient.

  5. Cindy  June 17, 2014

    I too hide the pain, but this last year, I’ve been worse and slower, I moan out loud a lot, but working on that. I’m new to this site, I feel desperate for a pain free day. AND a good night sleep. I wake miserable, and it remember the days when it made me happy to hear the birds in the morning. I wish someone would check into the damage chemo does to your body, it excellerated the fybro. I can’t take vitimins for they make my stomach feel rotten. I have my pain meds and cymbalta, what else can help. Also my husband bought me a hot tube that helps for a short time. Thank you xoxo Cindy

  6. Cindy  June 17, 2014

    Me again, I wanted to mention does anyone feel ashamed or embarrassed by telling people you have fybro? I hope you all have a great painless week. xoxo cindy

  7. Marsa  June 18, 2014

    My spouse seems sympathetic but he doesn’t support me in any way. Expectations of others keep me pushing through the days of pain until I want to throw my hands in the air and say, “I QUIT”. But I keep enduring my personal exhausting painful experiences with this “syndrome” because I don’t know what else to do. The medication trials I’ve gone through didn’t work for me so I’m praying for a miracle.

  8. Michelle  June 20, 2014

    I try not to tell people that I have FM. I barely admit it to myself. I was diagnosed more than half a lifetime ago. I prefer to irrationally blame every physical problem on my 8 herniated cervical and thoracic/lumbar discs. I have finally come to grips with FM, but I don’t think that my public me is ready to “out” myself.

  9. nfadmin  June 21, 2014

    Cindy, your experience sounds so much like mine. My doctor prescribed a large dose of generic Prilosec to take first thing every morning. It works all day to prevent problems with the vitamins and many, many meds that I take. Cymbalta made me miserable, but Lyrica helps and so does Savella. I have had back surgery with terrible results (2009) and I take a muscle relaxer and use a Butrans pain patch. I change it once a week; it seems to work better now than it did three years ago. Just wishing you feel better. Marla

  10. Nancy  June 25, 2014

    How do you come to grips with having fm? I was just diagnosed and just don’t understand. . .

  11. Shafiq Muhammad  June 26, 2014

    I have applied for membership of NFA
    About me I sketched in few words. Kindly Review

  12. Jessica  July 7, 2014

    After receiving a diagnosis it seems like there’s still no answers or hope. Everyday in pain is exhausting and I don’t know how much more I can handle. Having such a bad flare.

  13. Traci  July 7, 2014

    Fibro puts me in bed several days a month. I eat gluten free, no artificial sweeteners, no white starches, no candy and as clean as possible. But it never fails I have flare ups that knock me on my butt and my breathing capacity keeps worse with each flare up. I honestly don’t think doctors have a clue what we are really dealing with.

  14. Sandi  July 7, 2014

    I’ve suffered for years and would just say oh I’m fine no matter how bad it was, I finally started complaining to my doctor that I hurt all the time and what’s he do pats me on the knees and tells me oh you probably just overdid it.I went through this for about four years or so, then my doctor left his practice here and thank God the lady that took over for him I broke down in tears in front on her and she knows exactly what it was. I’m just starting treatment and still have a lot of pain but at least now I know why.

  15. nfadmin  July 23, 2014

    Sandi, I understand how you feel, I had the same experience, many doctors telling me it was natural to feel like that. Until finally found the right neurologist. I still have lots of pain LOL but at least I understand more and I’ve done some research on the website to try to learn a little more about what’s going on with my body.
    Besides having pain all the time, it has damaged my relationship in the intimacy with my husband. Although he is understandable I know is frustrating.

  16. Terry  July 23, 2014

    Traci and Laura
    I too started feeling out of breath recently and like Traci said, feels like an elephant is sitting on my chest. Very soon I’ll be visiting my neurologist and hopefully he can tell me the reason why.
    What I had found to help me ease fibromyalgia pain is that every night I put LAVENDER OIL drops into the diffuser to breath and I also rub it on my face for a good night sleep

  17. Susie  July 23, 2014

    My Rheumetologist just confirmed that I have fiibro. It stinks! I take Cymbalta and Topomax 2x a day and a muscle relaxer at night. I want to get into yoga or swimming but I just feel like crap and can’t get motivated to start. I’m going to try tomorrow as it is a new day. Praying that I will have a pain free day….praying for all of you too. Blessings.

  18. Chris  July 29, 2014

    I was diagnosis with Fibromyalgia back in 2006. Since that day I been living in hell. I’ve taken cymbalta, predisone, trazadon, and tramado. I sleep for 2 to 3 hours a day.

  19. Terrie  July 29, 2014

    I understand not wanting to tell anybody about having FM. I’ve been a nurse for over 25 years and have heard doctors laugh and joke about patients like me. They don’t understand what they can’t see. It’s very frustrating but finally there are clinical trials being conducted for new medications to treat this horrible syndrome. Good luck to all. I feel your pain.

  20. Liz  August 26, 2014

    I’m new to this site, but not to Fibro. I, like many of you, have been battling this more than half of my life. I have such a hard time with medications and side effects. I hate thinking of all the medications I’ve taken, then changed due to side effects, then taken more to counter act those side effects… ugh! I really want to try a more natural way of handling fibro. Has anyone reading here tried any herbal or natural remedies vs Rx medications? If so, did you find relief?

  21. nfadmin  August 27, 2014

    Is not hugging because he’s afraid to cause you pain? My husband told me that it concerned him, and always waited for me to approach him so he’d know it was ok….. My husband “neglects” my needs also, but I think most of it is not knowing what to do. He only cooks about 3 things (my fault, I should have encouraged this) and housework is pretty much out because he has a serious back condition. It’s all waiting for me to do when I have a good day…. I have found ways to make things easier on myself. Vons (a CA safeway) delivers, so I order everything online now. I used clean house top to bottom in one day….. now I set my sites to clean one room a day….. He does the garbage, recycling, and his own wash (that was new for him, and he’s still not quite got the timing down) I’ve had to accept living in home rhat is messy, it was hard.

  22. nfadmin  August 27, 2014

    I know exactly what you’re saying, FM is that ‘unconfirmed” disease…. I don’t like telling people because they feel compelled to tell you all the “FM” things they know….. the holistic approach, the meds that actually turned out to be the problem rather solution, the friend who cured it with this or that, on and on…… I have said, I wish you could see on the outside, what I feel on the inside, then maybe you’d understand………….

  23. Donna Gulyas  September 30, 2014

    This April post was if you were telling my story. Except, when I was so cold in the morning, I would bring my school clothes into the dining room to get dressed while I prayed down on television wall to wall carpeting against terrorism long eat register that ran from one end of The wall to the other. Everything else is the same.

  24. Sheryl Stahnke  September 30, 2014

    I had hoped for many many years that all the Dr s needed to do was find out why I hurt so badly then I would be cured. I’ve been suffering for 53 years. I too was told for years it was all in my head and also still don’t tell people that I have Fibromyalgia and RA. My husband of 37 years still doesn’t get it. The severity of my pain. He just doesnt answer when talk to him about it. No support. My 2 sisters listen, sometimes and the same thing, maybe if they don’t acknowledge it it doesn’t exist? I have no friends, had to leave my job 10 years ago. I wish there was a Fibromyalgia support group in my area. On line is good but the face to face ,I think would be even better. I thought I could start one but I can’t be counted on. It’s day to day as you all know. I’ve had to turn down in-laws invites numerous times they don’t even ask about me anymore. Well that’s enough whineing for one night. Peace and less pain to all.

  25. Mitzi  October 14, 2014

    Wow.. makes me wonder .

    I was diagnosed 6 years ago. I did not cope well. Grew up with add. Now dealing with adult add and fibromyalgia. I floundered alot. Then a friend of mine told me about a physiologist in lenexa, kansas. Dude is 73years young and was totally able to teach me coping skills. I took it all in!! It helps!! I stopped taking lyrica on my own after reading the side effects such as weight gain and thoughts of suicide..I have managed to lose 40 lbs. Got on a mild med amitriptyline.. push myself.. moved to an apartment on second floor.. and yes some days I feel stronger!! We must be our own advocates!!! I enjoyed reading your blog and just wanted to get back to you. Starting to do piyo.. we will see. I don’t get the debilitating headaches anymore!! Hey.. I’ve been pretty sore all week. But. It will pass!! GOD BLESS!! MITZI

  26. Kimmy  October 15, 2014

    Im a 56 yr old lady diagnosed with FM 9 years ago, I take Amitripolin 40mg and Citalopram 40 mg also on Morphine 20mg every 24 hours,I’m on Citalopram for depression, and amitriptolin for FM, Morphine to control pain, it just makes me drowsy with pain!, I tried to take my life, I’m not a coward, neither am I brave, I just didn’t see an end to my pain, nobody understands like those who actually have this pain!, my friends are good whilst I’m the joker, when I am retreating everybody seems to just let me go?, this is when I most need the help, sorry for my story being a sad one, I used to care for the sick and nurse those with cancer, yet I can see no happy future for myself, I know I’m not alone, so then I think how do all you other sufferers get through your awful days?.I was always the funny one in a group, now I’m the one who always shies away from the group, because of..noise,light, pain, smells, fibro fog, tooth loss due to grinding

  27. Emery Nieves  October 31, 2014

    This is my 7 year with Fibromyalgia & Neuropathy, very pain full, now i have so much pain in my feet that it makes it hard to walk,i have a 10 yrs old boy and this is why this hurt the most,not been able to be as active as a child his age needs, i have try diferent treatment but nothing occurs i feel worse each time every day,it making me nervous, anxious, sad,helpless,faithless undesirable, frustrated, …whant to knoe how to fight this pain

  28. Tammy  December 4, 2014

    Hi! I’m responding to the “beginning of your story ” post and the quote / poem about pain. I’ve had FMS & CFS since 1995. Not long after as I’m sure many others have experienced many other auto immune illnesses seemed to follow. I now have UCTD along with acute chronic pain.
    I’m wondering how many people really read each line and said to themselves yup this applies to me or no way near the truth. I’m ok with everything but 1 line.

    You will find true friends who will be your support.

    Really ⬆? The longer I have been ill and unable to work all the more “my friends ” are MIA! I don’t mean just once in awhile, I mean gone for good. These are people that I’ve known for many years and we had good friendships. So yeah, I just don’t see the finding true friends. If others do, all the power to them. I think it’s great but for me they have let and lost all my information obviously.

  29. Shannon. king  January 21, 2015

    My Dr.gave this web site to me today. I was diagnosed about 15 years ago. I walk every day an swim. It helps but no one. Has pain like fibromyalgia gives your body. It has changed my life so much. Thank you for sharing.

  30. Theresa Sowards  February 3, 2015

    I was diagnosed with Fribromyalgia and sleep apnea/severe fatigue in October, 2014. 3 of my sisters and a cousin have had Fribo for a number of years. I always denied my pain until a year ago when I could no longer function. I never wanted to be identified with Fibromyalgia. My doctor feels that I most likely have had it since my childhood. I have been on Cymbalta for 3 months and feel so much better, although, I do have most of the side effects for this drug. My husband has ALS (Lou Gerigs Disease) and I am his caretaker. It is all I can do to get through each day.

  31. Amy Tucker  February 19, 2015

    Thanks for starting this and writing your story. Your childhood story sounds so much like mine I’m amazed. I use to get out of bed sore every morning and rush to the living-room in the morning and put my feet and legs on the heat vent and cover it tightly with a heavy blanket around me to get as much heat as possible for as long as possible. Doctors told me for years when I talked about pain that I was fine and if I sat up straight or didn’t drag my feet I wouldn’t have pain and that sometimes people just have pain and it wasn’t a big deal. I’m 38 and yet to be formally dx with FM, all the symptoms fit so perfectly. I can’t imagine it could be anything else. The last time I brought it up was over 10 years ago and the doctor told me that FM was something I DID NOT want so we weren’t going to address it. My previous doctor said she thought I had it but wanted to dx my sleep apnea first. It’s time to try again and I am hopeful to get at least the validation of this lifetime of pain and fatigue. It sounds like the attitude about FM has changed a lot and I am hopeful to be finally formally get my dx and see if there is more we can do to try to obtain less pain days. I feel like pain and I are good old friends at this point but would love to give it the boot occasionally and have a break. Thanks for everyone sharing their comments. Best Wishes. 🙂

  32. Lyndia  March 20, 2015

    I am a 78 yr old lady, who has fibro, and going through a very rough time at the moment. Like most of the other people on this page,I get all the same responses from everyone, ie; blank looks when I say I have fibro and am in a lot of pain [ they have no idea what I am talking about, especially as I look so fit ] doctors who really have no time for me at all because ALL MY TESTS COME BACK NEGATIVE so I must be a hypochondriac, well, we all know that`s what mostly happens, but we are still in pain, and in my case am VERY intolerant to any kind of pills, [ not helpful ] the husband who is not unkind, but really doesn’t understand how much pain you are in, especially when you try and pretend you ` are fine `. At the moment I am feeling very down, as no matter what I do to make myself feel better, it is just not working right now, even though I go dancing 3 times a week [ God knows how, but I do, and put s a happy face on ] but I am feeling totally exhausted, don`t know where to go for help next, don`t think I will ever feel well again, devastated, desperate, etc., because I really don`t know what to do, although, I am thinking of going to either Guys hospital or Harley Street for possible help, and if anyone knows of a really good consultant, please let me know. I know I probably sound like I am a complainer, but, I really really am not, I do everything in my power to stay positive, and tell myself IT IS ONLY PAIN and won`t kill me, but right now I am so tired be cause of hardly any sleep, bad fibro fog, etc., however, I would like to wish all the other people on this page, lots of hugs, keep going as much as you can, stay as positive as possible [ good coming from me right now] and God Bless you all, I KNOW EXACTLY WHAT YOU ARE GOING THROUGH, and my thoughts are with you. Sorry for doing such a BIG RAVE on here, but I really needed to get it off my chest, so thanks for listening. Lyndia

  33. Babbs  May 5, 2015

    Finally, after 30 years of suffering with myriad of symptoms and literally dozens of doctors and testing, received a definitive diagnosis just this week. Grateful to have a ‘name’ applied to the lack of quality of life that has been the old new normal. Ditto, ditto to all the mental and physical ailments you all are dealing with. Thank you all for sharing what works and what doesn’t work. Being new to the arena, I’m trying to educate myself and determine how to cope and manage this menagerie of issues. Doc suggested I get a Jacuzzi or attend hydro therapy; neither of which is affordable for me. A simple walk around the block is intimidating for fear of falling and splitting my noggin open and bleeding to death in the street. I must say, the loneliness (lack of work, friends, understanding) is the most difficult aspect. While it pains me greatly to know there are so many other sufferers out there, it is also ‘nice’ to know I am not alone in the world of FM. Onward compatriots. Keep up the good fight.

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