May 12 is International Fibromyalgia Awareness Day!

 

In addition to my lupus, I also have fibromyalgia. One of my best friends was recently diagnosed with it as well. I love her. I feel that although pain and fibro is something I know a bit about, I can not help her acceptance of this diagnosis. I have seen her in pain both emotionally and physically. I have watched as her life has been drastically changed by this condition. Hopefully this awareness day will bring light to an often misunderstood condition.

fibro ribbon May 12Fibromyalgia is a chronic condition characterized by widespread pain in the muscles, ligaments and tendons, as well as fatigue and multiple tender points—specific places on the body at which slight pressure causes pain. The intensity of symptoms may vary. Although there is no cure for fibromyalgia, it is not progressive or life threatening. Doctors do not know what causes fibromyalgia. Fibromyalgia is more common in women than in men.
(mayoclinic.com) You can find more information about Fibromyalgia and the May 12th International awareness movement at www.may12th.org

What are you doing for Fibromyalgia awareness day? Comment below or join us on on facebook at www.fb.com/bydls or www.twitter.com/bydls  remember to use the hashtag #spoonie and #fibro to find others who are in the same community you are!
-Christine

©2017butyoudontlooksick.com
  • veronica

    Hi Mary,

    Can you please tell me what supplements you use for your fibro?

    Thank you,

    Veronica

  • Carlund Williams

    Jan, I also had breast cancer. I was oadmin of a fibro group and I told the members of the group, you know I can beat breast cancer but you can’t beat fibro. My friends thought I was crazy for saying that. My fibro friends understood. After my treatments I got so much worse, especially the neuropathy, well actually everything. I finished treatments the middle of 2014 and was sick as a dog and so weak and I’ve been that way since.

  • Carlund Williams

    So man of you are so right and I posted o the Spoon article. There is another article out there in the FB groups and probably you cn google it. There are 6 stages of fibro. #1 being where you are 1st diagnosed to #6 being mostly bed bound, not driving anymore, no housework, cooking. My Dr says pain meds don’t work. I haven’t found anything that works. I take gabapentin 600 mg 3 time a day and I thought that was high til a friend just told me she takes 1200mg 4 times a day. My neuropathy is so bad but I also had breast cancer and took chemo and that made it that much worse. So much nerve damage. All those back problems listed above. Stomach problems every which way I turn. My hair and skin hurt. Yes it is progressive and we don’t need a Dr to tell us that. Also my Dr said that after fibro gets so bad it just goes right into chronic fatigue. And about it not being deadly, I also read an article where suicide is the #1 killer of people with fibro. The pain will drive you crazy

  • Mary Schmalshof Calcagno

    Hi, I am a 26-year-diagnosed fibromyalgia survivor. I prefer to say survivor, because every day that I manage to finish, is another day survived. I was fortunate, a doctor gave me some good advice early on and I started taking some supplements that I think lengthened the time before full onset began. Five years ago, however, due to work stress, and more insomnia issues, my symptoms got worse, so my doctor increased my medications (cymbalta and gabapentin). What I know now is that the side effects of those two medications magnified what I was experiencing with the extreme fatigue. Even though I slept, the sleep was not restorative sleep, or the pain in my shoulders and hips would wake me often. I lost my job due to a company reorganization, and stress hit big time. I basically spent 6 months in bed. This is not who I am. I started a home based business to provide the flexibility to work when I felt well enough to do so, but getting and keeping momentum was hard. Affording the medicine was even more difficult.

    Now, the happier part. I have found products that have allowed me to decrease my medicine dosages, and number of prescriptions, I have lost 31 pounds, and I have energy, focus, and less pain with nearly no rebound days. I know we all look for the magic pill, or lotion, or juice. I can’t say it works for everyone. But the Doctor who has been using this to treat his medical patients claims 70% of his patients improve. The key is controlling inflammation in our bodies by what we eat and do, and then providing additional nutritional supplements to allow our body the nutritional elements that it needs to heal naturally. I would not have believed it until it started working for me out of the blue. Every day I can do more, and experience less pain. It is a learning process, to test new limits, and I admit I am using my body as my own lab rat to see what works and what doesn’t. I was tired of giving up pieces of my life to this condition. I am still alive, and I wanted to be able to act like it! Not sitting at home mindlessly staring at the television or my phone.
    There is hope, there are ways to lessen the suffering with fewer pharmaceuticals that cause more damaging side effects. If you would like more information, let me know. I am on a mission to help other sufferers start getting their useful lives back, too!

  • Aurora WindDancer

    I’m not sure about the “not progressive part”, as I was diagnosed 12 years ago, and it had very little impact on my life or ability to function, until quite suddenly and traumatically five months ago my symptoms exploded starting with an 11-day migraine, and I developed a whole host of excruciating and debilitating symptoms I had never had before. It may not be “life threatening”, but the sudden extreme increase in pain levels and types and fatigue have caused me to feel that my life is unlivable and for the first time in my life I’ve had suicidal thoughts. I do not entertain them, and have no wish to do so, but when the pain is so bad and there’s nothing that lessens it sometimes my mind feels like giving up. I’m trying to learn why my symptoms suddenly increased and how to manage it, but so far it’s not going well.

  • Mary

    I agree with you, Lorre. I too started with FM when I was 39-40, and am now 59, and it IS harder to live with and deal with FM every day. I am trying to get back to stretching and slow walking or using my stationary bike, but find it hard to make it a regular thing. Just doing the daily basics of life are hard enough with FM! Hang in there!

  • Jenimc

    You don’t believe every thing you read on the internet, that’s what you do. I am 16 years since onset. And yes, for me it sucks. But I never let anyone else’s experience define mine. Live. Love. Do it to the best of your ability. Don’t give up!!

  • Nervousanon

    Fuck. I was diagnosed today. I’m only 27. Is this what is in store for me?

  • Shawn

    I, also, agree wholeheartedly!

  • Rich Goldberg

    I’m glad to hear you’re doing so much better

  • Elaine

    Oh my gosh, I feel like I wrote this. I 100% agree and relate .

  • Lorre Baisch Hopkins

    I have to disagree slightly with the fact above that says Fibromyalgia is not progressive or life threatening. This was the pep talk my doctor gave me when I was diagnosed 17 years ago. I was 39 years old then, and I am now turning 56 in a couple of days. I am dramatically more disabled than I was at 39. If the disease itself isn’t progressive, the symptoms of the disease surely cause worsening over time. Being in pain without energy to manage daily functions has definite consequenses over time. My muscles have de-conditioned from my inability to stay as active as I was before. My fatigue has forced me to stop doing many of the things I once enjoyed. The inability to stay active causes isolation which only deepens depression and mental fog. My flares no longer have marked gaps between them. I am mentally and physically worn down from this disease, and I can understand why Dr. Kavorkians first victim had Fibromyalgia (though of course I do not support what he did!) It is hard to hold on to hope when you are in pain 24 hors a day, and your friends and family no longer call you to do things because they know you will probably say no. I have exhausted myself with Doctors, new treatments, and pie in the sky hopes for healing. Aging seems much harder and more accelerated with Fibromyalgia. So NO, I do not agree this disease does not progressively get worse, and though it isn’t fatal, depression is….and it is very hard to avoid depression facing life each day through the pain and fatigue of Fibromyalgia.

  • Bill

    I was just diagnoised in Aug of 2012. I am doing great on 30 mg of Cymbalta a day. I may becoming of them in a few weeks. One of the things I think haas helped me is my diet. My wife and I reserched it and it said to do glueten free,give up coffee,soda,and night shade vegtables. They include;tomatoes,bell peppers,eggplant,they say there is a chemical in them that can trigger pain. Also,try going vegan. Studies have shown that people who do a vegan diet have a better outcome. Without getting to religous,I have also startred praying more,not so much for myself,but for everyone in chronic pain. I hope this info helps you all. Good luck

  • Brittany

    I’m not sure if to post on this you are required to have been diagnosed with fibromyalgia, but I feel I have to tell my story to someone or I will go nuts. Ever since I passed out at my first job a little over two years ago, my life has never been the same. A bunch of tests were done, but they could never figure out why I randomly passed out. I didn’t work for a year because i have a severe concussion, and luckily I went to an alternative school and graduated right on time. When I got another job after that, I was fired because my till was short over and over. And I knew I was good with money and careful about it. The most previous job I’ve had, I almost passed out a few times but I know how to see it coming so I stopped it and had to stop working. The point is, it took me forever to convince my parents that I was getting very sick. Just working for a few hours doing what everyone else did made me feel sick; I was in pain, I lost my vision, my muscles weakened, and the worst part was the fatigue. Of course there are a million symptoms now, but that’s just how it started. A short list of things that I could be imagining or theyre just something else that can be easily fixed. I don’t want to go on forever, but to let anyone know that is young and isnt feeling like they used to, dont ignore it. I was 17 when all this crazy stuff started happening, and I’m 19 now. You’re never too young. So keep fighting for yourself, because no one else is going to understand you unless it’s, of course, someone on this site. Take care of yourself.

  • Angelinamaria00

    I was on meth for months…it helped some with pain, but was not worth the severe sedation, tooth decay, and esp. Scary tremors I had in my sleep. I would make odd sounds and lift my arms during sleep as if twitching! My bf would not sleep w/me!!!

  • Walshsa66

    My girlfriend has Fm, she currently takes many pills for the pain, none work. She now has an appt with her Dr to discuss methadone, Does anyone know if this will work? What are the effects, will she get addicted, will she be high all the time?

  • Believeandachieveitworks

    Breaks my heart to hear so many people suffer with FM.  I am a new distributor with a company that has a product that has helped several FM sufferers with the pain of FM.  If interested in checking it out please do http:believeandachieveitworks.myitworks.com.   I don’t understand it all…..all I know is I have heard testimonies from actual people how this detoxing has gave them a new lease on life.

  • Tammy

    I have just recently been diagnosed with fm. This recent “flare up” came on quite suddenly and very aggressively. Looking back I suspect Ive had for years now just noone knew what to say it was. It has always been a running joke “you know its just Tammy”. I am in so much pain right now I dont know what to do. I am currently on 30 mg of cymbalta and 200 mg of lyrica and still feel like a bulldozer hit me repeatedly. I have gone from working 10 hr days to 4 hrs. I think i could handle the exhaustion if i could just have some way of minimizing the pain. I struggle everyday to understand what is happening to me and then trying to get everyone else to understand. I read the spoon theory last night and it gave me such encouragement.

  • buttakittin

    It’s nice to know that I’m not alone when it comes to the fm. Diagnosed early in life did my secondary schooling through distance education…walking from class to class was a nightmare especially when my legs gave out for no reason. I’m now doing community college (Tafe) by distance education. I can pace myself better this way and there is no impact on my body…I’m now 34 and I dream of being able to work from home as I have never been able to hold a mainstream job. There is always hope. I believe that I can do whatever I put my mind to but climbing everest is definitely not on my to do list lol…

  • Stephanie D.

    Hi everyone. It is a struggle to get through every day, especially in school. Life definately is not easy with this but we do what we can when we can. I get called lazy all the time. I’ve had this since i was 14, dx at 16 and now I’m 24. We just have to do our best and never give up. All of you give me hope and inspiration!

  • eFab

    Its not enough, apparently, for me to be newly diagnosed with Fibromyalgia and trying new drugs that wack me out at night so I can sleep but leave me dragging most days along with the fog, anxiety and pain… I had to experience the most painful day since my diagnosis on Fibomyalgia Awareness Day – how ironic is that?!

    I’ve just found the site and hope to find community and suggestions to help me get through.

  • matt peake

    two back injuries chronic pain ostoarthritis compartment syndrome and a LOVERLY pilo nidal sinus spondylosis and spurs sciatica YEEEHAA owch but have hypermobile joints . good days and bad–but still work so all is well 🙂 and bipolar type 2 and depression and an addict…………………oh well life lemons lemonade etc 🙂 blessings to you all >.<

  • Cheryl Snopek

    I was also diagnosed w/ Depression , panic attacks and generalized anxiety. So i do know in some ways how you feel Sarah HI. When i am in a state of anxiety , super stressed or very depressed it is so much harder to cope w/ the pain. The frustration can seem insurmountable sometimes. However, one blessing among others, is that i am so acutely aware of how much i took for granted. And when i do have good days and can jog, or work in the garden or simply do some house work with out having a few days of sleep or rebuilding time , i am over joyed!! I even smile now when i can sit outside in the pollen filled air and enjoy relaxing in the grass w/o getting a major allergy attack that leads to acute / chronic bronchitis. ( yes, for some reason after all of this started i could not even go outside w/ o getting extremely ill ) . I used to joke that i should live in a bubble. So now , after a day like today when i can walk about and take photos of the blooming flowers it makes me smile. So through all the downsides those glimmers of joy keep me going and knowing that there is a purpose to all of this. And the spoon theory is pure genius !!!!

  • I was diagnosed with Fibro/CFS when I was 17. I’m now 33. I’m getting better at managing it. I’m also bipolar. When I’m manic, I don’t feel the pain so much, but I tend to do too much and don’t sleep, so I feel it hard when I cycle down. I’m a very ambitious person and being chronicially ill has really caused so much frustration, as I cannot do the things I want to do. Some days I cannot do much at all. I am so thankful for the spoon theory, my husband really gets the analogy!

  • Cheryl Snopek

    I am so thankful for this site. And thank you for publishing your thoughts. I was diagnosed w/ Fibromyalgia in 2006 (36 at the time) . I had struggled w/ an unknown illness for 4 yrs prior to that and when my one Dr. Told me Fibromyalgia i thought ” oh great, like anyone is going to take me seriously if i tell them this. ” Everyone meaning , my now ex-husband , my family and friends. And i was right . They did not. 2002 is when my life changed a full 180 degrees. From a marathon racer active in my own business as a massage therapist and i don’t think there was a day that went by that i did not garden or run or just do something in Nature. I have had to make a whole new life for myself and i still find it hard to accept. I ended up in divorce and no job , living in a new area. I am sooo grateful for the few that understand and have helped me along my journey. And i am so grateful for this site and the people who share on here. Thank you all from the bottom of my heart!!!

  • Patricia Crego

    I have had fibromyalgia for years and I agree with most everything everyone else has said here except for one thing you said Christine. Not sure if it was your personal opinion or something you copied from somewhere else. But the statement (fibromyalgia, it is not progressive or life threatening) is not true. Granted that statement is what most doctors will tell you but do they have fibromyalgia? No, most don’t. But I am here to tell you it does progress. I have been told that it reaches a point and doesn’t get worse. Well I am still waiting for that point where it stops getting worse. Every time I think this has to be the worst I have ever felt (BOOM) it rears it’s ugly fibro head and shows me how wrong I am. I have had this for years and it has not stop progressing yet.
    As for the part about it is not life threatening,,,well maybe not directly. But think about this, most people including myself don’t sleep because of fibro. It keeps you from getting that deep sleep your body needs to heal. And what happens to the body when it is deprived of sleep? It affects the entire mind and body in a very negative way. There have been many sleep studies on young healthy people where they kept them awake, would not let them sleep more then 4 hours at a time. And they found it caused even in these healthy people lack of brain function, raised blood pressure and lots of other things as well. And if your brain and other organs are not getting what they need from sleep then what will happen to them when they become overworked and stressed from lack of sleep? Everything can be affected by fibromyalgia in the long run. So those who say it is not life threatening I say to them, *&^%@# because it is. It is like a big snowball that just keeps rolling out of control. Maybe some people are able to keep various medications in their system and on hand. But not all of us have that luxury. Many of us are very sensitive to medications and unable to have our choice if any at all. No 2 cases of fibro are alike and no one person can compare their illness to someone else’s.

  • Kelly Plexico

    I struggled for years before being diagnosed (a year later Multiple Sclerosis was added to that!). It is hard to explaing (as is MS and many other conditions I am sure!) to people, especially my 7 year old daughter. Life is not what you plan it to be by a long shot. But it can be enjoyable none the less. Finding places like this web site helps so much. It gives those who don’t get it a little glimmer of what spoonies go thru.

  • Janlking

    I’ve had pain all of my life – when I was growing up, our old family doctor called it “growing pains”. At first they thought it was RA, since that runs in the family. When I was a pre-teen, I was on a regimen of 8 Bufferin a day. No wonder I have such severe stomach problems now.
    I’m 47 and was only diagnosed with Fibromyalgia about 10 years ago. It physically hurt growing up and not being able to do things my other friends did and being called lazy.
    I’m functioning at a full-time insurance analyst’s job, but there are days when I can barely make it through the 8-hour day and just plain crash when I get home. I live with someone that suffers from post-polio syndrome, and some days neither of us is capable of even putting the dishes in the dishwasher.
    I take Lyrica for FM, but I’m also dealing with diabetic nerve pain as well.
    Some days it’s a complete struggle, but I’m trying to enjoy life, the nice weather (now that winter’s over), and keeping a positive outlook – even though everything I’ve said above doesn’t sound that way!
    It’s a wondrous thing to know that I’m part of a community like this – the support and understanding is precious and priceless.

  • Sparkle

    I too was diagnosed with Fibromyalgia actually just last month. I have been dealing with it my entire life just thinking I had a bad back or this hurt for this reason. I never understood why massages always hurt and just assumed they were suppose to. I didn’t understand why when someone “pokes” me in jest, it’s always hurt.

    I’ll never forget the day I read The Spoon Theory. I read it to my fiance outloud and just couldn’t stop crying. I know he still didn’t get it fully, but it does help people to understand. I have had some people not interested enough to read it, but that’s okay, I’m not interested in knowing people like that.

    Every day is a struggle for all of us and I am thankful to this community to feel like I have a place, an escape where people really do understand it.

  • Dale

    I too had FMS/CFIDS from about 8-10 yrs. old & now almost 65. After reading all the posts, I have to say I admire each & every one of you! I had a terrible time in school & disliked learning because it was always so difficult. Same now, so many yrs. later. The only comfort I find is knowing that others DO understand what I deal with & that it is very real! We’re the only ones who understand each other. I feel like I have been cheated from a normal childhood, into adulthood, into my senior yrs., but after reading these posts, it makes me grateful to know this condition is finally recognized as a young person’s illness now.

    Wishing all of you well & know that I admire all of you. You WILL succeed in school, even if it takes longer. Be proud of that fact that you will be getting degrees despite this. I ended up on disability in my 40’s, after yrs. of working in the med. field. It makes me smile when I realize that I did make it through those yrs. of working & trying to live a normal life. In those days “this” didn’t even have a name & I felt SO alone. You’re all very special, & admired so very much. Gentle hugs to all of you

  • Jan Koelsch

    I was just diagnosed with fibromyalgia at the end of last year. Took a while to get that diagnosis. Some docs have thought that this was all in my head. Others were just baffled. Most in fact were just baffled.

    At least knowing is better than not knowing and at least knowing means you can discover what will work for you for quality of life.

    Having having breast cancer and on aromasin the fibro doesn’t seem quite so bad but neither is good.

    Prayers for all.

    Hugs,

  • Oh my gosh! I’m entering into my fifth year of school, and hopefully I’ll be able to graduate next year. I always feel weird since I’m not graduating with my class. It’s hard to explain that my fibromyalgia makes it impossible for me to take more than 12 credit hours per semester, and even that was hard at times! I’m glad I’m not the only one who has had to take longer to get through school because of this thing. No, I’m not saying I’m glad you have FM…just glad that I’m not alone and that someone else understands! I am so thankful for simple things like my shower chair and wheelchair that makes eternal walks across this small campus possible. Now I don’t have to worry so much about *how* I’m going to get somewhere and the fact that walking would use a precious spoon, but that brings with it another set of problems since I am also totally blind. Anyway…enough ramblings…it did help to read others’ comments that I could resonate with…thank you for helping me to see that I’m really not alone in this fibro/school battle. And I’m determined to win it!

  • Joy

    I also have Fibro. plus I was just diagnoise with lupus last year. It just so hard to explain to anyone why u feel so tired and sore. I missed out on my grandchild when he was a baby I would come home from my work as being a certified nursing assistant on an alzeimers floor. I would be so sore that I could barely make it to my home. My arms were so sore and tired that I could not hold him as a baby. Sometimes I think they thought I did not want to babysit. It hurt me so much because at the time I did not know what was wrong with me. Because my job did not have insurance so i could not affordable a dr. or get the test necessasry to rule out what it may or may not be. My legs gave out while at work. Luckly I didn’t have a resident in my arms.That was when I had to quit my job because I didnot want to hurt anyone. It took have to get a state medical card in order to have tests and xrays that I needed for the diagnoses. You are an amazing woman. Thanks you so very much putting your feelings for us to take note on.

  • Chris

    I, too, have had fibromyalgia and RA for 11 years, but I got the good news when I was 52. I know what you are going through and it is a struggle. My doctor put me on a low dose of an anti-depressant, which has helped a lot with the fibromyalgia pain, but you do have to change your whole lifestyle. It was hard for me to accept at first too, because I had never been sick and always very active. Now I really have to be careful how much I do because if I over-do, it brings on a flare or I pay for days after.

    I thank God that I am blessed with a wonderful husband who understands and does everything for me so that I have the energy to go out and enjoy myself now and then.

    It is hard when people don’t understand that you are not well…because “YOU DON’T LOOK SICK!” Hopefully, more and more people will understand. I congratulate all of you who are dealing with this condition and trying to make the best life you can, while dealing with the pain.

  • Tara

    I as well started with Fibromyalgia at a young age and was finally diagnosed with it at age 16 too! I am now 23 almost 24 and completely understand Pam what your talking about. I have been struggling through the last couple of years with my disorder because it seems to be worsening. When i read “But you don’t look sick” I cried through the whole story because for the first time I even understood what I go through everyday. No one realizes the struggles and pain people with Fibromyalgia endure. I just graduated from college and it took me six years because I could only take 12 hrs a semester or my body couldn’t handle it. I am really glad my brother sent me this site because it has helped me realize I am not the only one struggling.

  • Pam

    I started with fibromyalgia when I was 11 and was officially diagnosed when I was 16, I’m now 24 and have had my life changed drastically by this condition. Its hard to find out so many things I want to do I now can’t because it would hurt or worse still it would hurt the following day and the day after that and the day after that…I try to remain positive but its hard when I see my able bodied friends do so much stuff I can’t do and the worst thing is, they don’t get my condition, they don’t understand how it affects me so they assume its something and nothing.

    Today for Fibromyalgia awareness day I went shopping with my boyfriend and my best friend who has Lupus, we acted like normal healthy girls and for a few hours we were because we understand what its like to grow up “different” I think its the most fun I’ve had in a long time. 😀