What Does Fibromyalgia Feel Like?

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edited August 2016 in Awareness

Fibromyalgia article: What Does Fibromyalgia Feel Like?What Does Fibromyalgia Feel Like?

"I’m a week into a fibro flare-up at the moment, so I’ve been keeping notes on how it actually feels." Sarah shares 18 things she's felt during her flare.

Read the full story here


Comments

  • I got a big heating pad and it's become my best friend. Applying heat to the pain has made a difference.
  • Today my fibro is ... giving me pain in my entire back,blurry vision,sensitivity to the heat,neck pain and stiffness.Oh how I wish I could lay down,I'm on my break at work and praying I make it through the rest of my shift. My feet and back are CRYING.No one knows about my fibro at work,don't tell them,what's the point,they don't get it.Thanks for listening!
  • # 14 is me today...I so often say my head too heavy to hold up.
    Just gotta think positive thru it all-some days that is more difficult.
  • Fibromyalgia makes it feel like my muscles are burning and achy. If I use my hands too much, they stop working properly. I have clinical depression, anxiety and insomnia and sometimes I cannot find the right words to use during a conversation. I've turned into a bit of a hermit because trying to act "normal" around people is exhausting. I would like to meet new people, date and do the other stuff that 30-something year olds do but who has the energy for that? I am thankful that I do not have all of the symptoms that some people do. I wish you all a day as pain free and lovely as possible. Hugs
  • @nydiam I use heating pads too. Every day! Heat definitely helps me. =)
  • I am always exhausted even after waking, some days are worse then others. My joints ache from the tip of my toes up. Musles feel weak, body feels weighted. Some days I feel as if I have poison running through my veins. Constant migraines! Some days my head is a bowling ball, others foggy and dream like, then sometimes like it is in a vice clamp. Elctro schock zaps in random parts of my body. Just a few months ago the itching started.it felt like fire ants or someone poking me with a thousand needles at a time and all I wanted to do was scratch until my skin was raw and burned and felt bruised. New pains! Last week I woke up and it was my Elbow. I didn't do anything to it but it hurt down to my hand. Still can't grip or lift anything heavier then a cup. Forgetfulness and a spacey brain are no fun. Insomnia is gone thank goodness! Oh and let's not forget if you over do it you feel sick for days. Yes and that anxiety for no reason. The worst ! Plus ifyou are not experiencing it then you don't understand and even your family will blow it off like it's nothing or you are lazy or a hypochondriac.
  • Some of you may be surprised to find out that all of these symptoms may have come from taking an antibiotic. Levaquin, Cipro, Avelox and floxin are antibiotics called fluoroquinolones. They are routinely given for sinus infections, bladder infections, bronchitis and others. They all have black box warnings about causing devastating adverse reactions that doctors are not aware of and then diagnose the patient with fibromyalgia. Look up fluoroquinolone toxicity and find out for yourself. Check with your pharmacy to see if you have ever been prescribed any of these antibiotics. They all have generics which cause the same reactions. Your pharmacist will know.
  • It's a hard path to walk, but coming to terms with it in our minds is huge! I have experienced many flares over the past 15 years, and truly understand how each of you feel as I've experienced all the symotoms mentioned. My latest is difficulty in breathing, as if I can't catch my breath or take a deep breath. It's so frustrating, but my faith in Christ is what keeps me going, He is my strength when I have none, which seems to be all of the time in the winter. Winter is the worst. It is true that others don't fully understand if they haven't experienced it, but we're all in this together.. Prayers for all!!
  • I have had this disease for 31 years. It is not coupled with psoriatic arthritis. I need at least ninety minutes to get my hands usable so everything I touch doesn't get dropped. I have piraformis syndrome and chronic sciatica.
    My skin often feels like it is on fire and should peel off of my bones. My hip sockets feel like they are on fire. My muscles in my left leg have become so we the leg will drag and my foot flop if I am on it very long. My muscles in my shoulders are so tight I feel like my head should snap off. The bones in my feet hurt. Wind or air blowing over my skin can
    Make my skin hurt for hours.
    I have an ever increasing number of allergies to everything. I got cellulitis from tree sap and a spider bite. I have started having trouble swallowing and spinchter failure in my stomach and common bile duct. Cold is painful and so is barometric changes. The hair on my head hurts, so do my teeth. Even with medication the pain becomes so great I vomit from the pain.
    On the outside I look fine. On the inside I am a wreck. I am willing to try anything and have.
    Then to be told I use this disease as an excuse. It's not an excuse it's a reality I wish I didn't live. I still cry because I need a handicap parking sticker.
    I walk like a duck to compensate for the weakest leg.
    I am tired of this and sincerely pray research will be investigated and find the cause which can lead to real help.
  • Omg I just joined your blog. I feel for you because I feel almost the exact same things you having going on. Stay strong it will pass.
  • I was diagnosed with fibromyalgia in 2003, after being submitted to various test, medications and specialist. The pain was so bad I could not get out of bed in the mornings and I had to use a quad cane to aid me in walking. Any type of work with my hands caused them to be swollen and so painful I could only eat finger foods.
  • Oh my gosh. #7 is what bothers me the most. It's why I can't work anymore. I'm a RN but have been unable to practice because of my lack of memory, concentration, and focus. I have to be totally alone, with no surrounding noise to pour my own meds and I still make mistakes.
    I'll deal with feeling every muscle in my body, my head hurting because my hairs getting to long, my constantly sticky weeping eyes, my weak upper extremities, I WANT MY BRAIN BACK! Nursing has been my whole life. I'm totally lost being unable to practice.
  • There are times, during flare-ups, that every hair follicle on my head, eyebrows, and eye lashes feel like each one is a straight pin that's been jammed into my skull! One of the myriad of painful symptoms I experience.
  • @Paula_1231 So sorry, I've had people give me that look when I pull into a handicap parking space. So far, none had verbally said anything, just waiting for that day.
  • This has been one of the hardest things I've had to deal with in my life. I'm 47 years old, naturally birthed 4 children (my youngest will be 21 in a matter of days) was extremely active in their lives,up through their senior lives, sent them off to college, got two of them married off, have 4 grandchildren and own a multitude of businesses. It all started crumbling down when my #3 daughter was a senior in high school. I woke up one morning and had zero energy, what the heck? I'm a BALL of energy, there was nothing I couldn't do, nothing! I passedbit off as "well I'm getting older", but heck, if this is how it feels now, what on earth is in store in the next ten years, and ten years after that? I suffer with tremendous guilt for not being able to do as much for my younger two as I did for the two oldest.

    Every. Thing. Hurts. Why?
    Why has this crap invaded my body, why did it seem to take away my senses, i can't think straight, I can't remember words, names, why I walked into a room even though I repeat it in my head the entire time I'm walking towards my end goal. It's ridiculous! I get my feelings hurt over the dumbest things, I'm mean for no good reason. Pain wreaks havoc throughout my entire body! I'm on so much medicine it's embarrassing, and more than anything..:.I'm tired.

    My family "kinda" tries to understand, but if I had a dollar for every time one of them told me it was "due to my diet", or if I'd just "go to bed at a decent hour", or if I'd just "be more active", or, this is the best one, "get off all that damn medication", I wouldn't have these so called flare ups.

    I feel broken, physically, emotionally and mentally broken. How do you all do it, how do you make family understand that this isn't in your head, that it's real, and very painful....
  • I've been in pain for 5 yrs. A dr thinks it's fibro but didn't really diagnos me for fibro. My whole life has changed. I do nothing because of pain. I can't take pain meds because I vomit or am nauseated all day and with this pain I can't be hanging over the toilet. I lay around and walk around my home when I hurt to much from laying down. I am on depression pills. This isn't my life. I was active and now I'm a shell of my self. If I have a good day I get excited and will go visit family but the next day I'm so sore and tired and depressed. This isn't how I thought my life would be.
  • @Netta I have the same thing going on and I think often of the song Every breath you take! I use that to take breaths in and out. I do breathing exercises and have given up my bra! I am a lady who cares very much how I look but found I like the no bra so I can breathe! Soft Hugggs and smiles and prayers!
  • I have had this invisible horrible diease for over 30 years! I am divorced because of many reasons but this disease can not handle criticism or judging. I chose to survive unfortunately my mother had this many years ago and found she couldn't handle it anymore and committed suicide. I have walked in her shoes and I am so proud of her for lasting as long as she did. She learned to get Vitamin B shots and going to a health spa and have unending massages works. I have found belonging to a health facility which has a warm water therapy pool makes my life work. I aerbocise in the pool and some days just relax and breathe and pray. I highly recommend soaking in the hot tub with Epsom salt and baby calming bubble bath with baking soda! We are all lacking magnesium and that it is best absorbed thru the skin. If you can't do a tub there is a lotion that you can get . I also recommend massage therapy with a masseuse that understands fibromyalgia. I found that my doctor writes me a prescription for 3x a week. I of course can't afford that but I am now doing 3 or 4 a month. It has made a huge difference! I take supplements to help vitamins B, D, and a multiple extra strength with eye vitamins included. I am also taking Tumeric in pill form after eating something with black pepper as it is absorbed better with it. Since we have blood pooling in our heads over our central nervous system it helps to thin it out and circulate it where it should be. I blog with several fibromyalgia sites supporting others including myself to help with handy tips to make a difference in their own lives. After all we are all here to help one another! Soft Hugggs and smiles and prayers!
  • OMG You just described my daily life! What is this and why did we get it? Wish someone could figure it out!!!! Mentally and physically frustrated broken is the best way I can describe it!!!
  • I have had symptoms since I was 12. I know it gets worse, I'm almost 70 and have more flare ups and more pain every year. Used to keep house clean, walked 2 miles every day than did a dancing to the oldies tape for an hour. Now I have all I can do to take care of my husband, he is disabled and now on hospice. I just wish family and friends would understand. That would be great.
  • WOW! You did a great job of describing! I have experienced all these 18 you describe at one time or another. Some of them are mainstays, and, as you so aptly stated, others change, come and go... and I get surprised by something brand new just when I thought I had this fibromyalgia thing down.
    And number 17 touched on what is the biggest 'teacher' for me from this insane experience (since 2009 also)... why am I no further along? Why can I not get to the bottom of this? figure out my personal 'trick' for ceasing the pain right in its tracks?
    Thanks for really paying attention and writing this so simply but so clearly.
  • cosmoblivioncosmoblivion Member
    edited February 2017
    @Paula_1231 Really appreciate how detailed you describe your symptoms, because it is validating for my own experience. I cannot even believe the way my body is 'carrying on' some days. Even when I am having a strong energy day, I have to be ridiculously careful or the proverbial other shoe will drop. When I read your comment, I read it as a cautionary tale.... take all this seriously, regardless whether my healthcare providers do.


    Paula_1231 comment:
    I have had this disease for 31 years. It is not coupled with psoriatic arthritis. I need at least ninety minutes to get my hands usable so everything I touch doesn't get dropped. I have piraformis syndrome and chronic sciatica.
    My skin often feels like it is on fire and should peel off of my bones. My hip sockets feel like they are on fire. My muscles in my left leg have become so we the leg will drag and my foot flop if I am on it very long. My muscles in my shoulders are so tight I feel like my head should snap off. The bones in my feet hurt. Wind or air blowing over my skin can
    Make my skin hurt for hours.
    I have an ever increasing number of allergies to everything. I got cellulitis from tree sap and a spider bite. I have started having trouble swallowing and spinchter failure in my stomach and common bile duct. Cold is painful and so is barometric changes. The hair on my head hurts, so do my teeth. Even with medication the pain becomes so great I vomit from the pain.
    On the outside I look fine. On the inside I am a wreck. I am willing to try anything and have.
    Then to be told I use this disease as an excuse. It's not an excuse it's a reality I wish I didn't live. I still cry because I need a handicap parking sticker.
    I walk like a duck to compensate for the weakest leg.
    I am tired of this and sincerely pray research will be investigated and find the cause which can lead to real help.
  • CarrCarr Member
    edited February 2017
    Wow. Just about everyone of these I have and tried to explain to everybody.
    I was diagnosed in 2010 with lupus SLE and hypothyroidism. Although many years ago with hypothyroidism and my rheumatologist thinks that I've had the lupus or quite sometime before then.
    I just recently was in and out of the hospital because of some nerve pain and they're saying that it is caused because of the low thyroid and I also have a bulging disc in my neck.
    Everyday is a struggle for me to get up and get myself ready the way that I want to be or to look so that I can go to work or do any of my activities with my family and friends.
    I'm so thankful that I finally found somebody that knows my symptoms physically and emotionally. Everyday I start out thinking well maybe I'm going to have enough spoons for the day and then I end up with none but I pray each day to keep going on and wish they could find a cure for all this.
  • Does anyone else have a lot of neurapathies. Feet, hands, legs and arms, and even on my face?
  • My mom who also had fibro, would say "I'm just a nervous wreck". Now I understand.
  • Your description of what you are going through eases my mind....crazy I know but it was like looking into a mirror! This is truly frustrating and looking for some relief, only to awake to find my day is once again as you described.....
  • @Judyk22 I'm a Rn also and haven't worked in almost 5 years......nursing was who I was and struggling with trying to find and wrap my head around this "new" me!! All I wish is to wake up normal again.
  • i have the sensation of being on fire. my skin feels like it is burning. my back if i move at all. down the inside of left arm, both legs and arms torso, my right foot feels so hot but then when i touch it it is cool to the touch. they increased one of my meds but it hasn't helped are these some of the other symptoms for fibro. i have the fatigue and muscle soreness besides the burn, no energy ,as well as others was just trying to figure out what is going on?
  • Exhaustion and fatigue topped with excruciating pain deep in my muscles. My skin feels so thin and irritated like a severe sunburn And I try to carry on the simplest of conversations but can't find the words to convey my thoughts. I feel trapped in a useless body.
  • I think one of the hardest part for me is that I am allergic to Lyrica and Lyrica is considered to be the best way to treat Fibro.
  • There are so many fibro diagnoses, you would think there would be something out there to help with the symptoms. My worse flare ups are the week and painful knees, shoulder pain, fatigue and the burning in my feet and hands. Praying for all of you and that one day there will be a cure.
  • @cjessen yes!!! I remember being given Cipro years ago and having an allergic reaction to it. That was before my symptoms started. I was having bronchitis and sinus infection. Before I got sick I was an active mom of two small kids , full time college student , went to the gym 5 days a week and kept a clean house. After that the pain, fatigue, headaches and total exhaustion came. My life went from full speed ahead to an abrupt halt. I slept for 12-18 hours a day and my skin hurt all the time and the headaches were relentless. Dr's diagnosed me with fibro and arthritis. I was also having thyroid issues with 3 nodes on my thyroid from 1-3cm each but dr's said my thyroid numbers were fine. 3 years ago a dr finally put me on thyroid meds when I lost my voice and was choking on food and liquids and couldn't breath. I've also developed psoriasis. The first few years of my diagnosis dr's had me on 8 meds a day from OxyContin to antidepressants and anti anxiety and muscle relaxers. Those meds were slowly killing me. I'm off all those meds now and actually doing better as long as I count my spoons and watch what I eat. Sugar is a killer. I also do not take any antibiotics or prednisone anymore. I use only homeopathic remedies like colloidal silver (best thing ever !) wild honey , turmeric , vitD, vitB, magnesium. I still suffer from all the symptoms but they are far less than before. I sleep more normally , walk with a cane because either my joints hurt or I feel unstable (I've fallen several times). Family can not understand any of this , ever. I've explained it for 8 years and they still don't get it. Yes, the depression and anxiety come and they say take a pill. No thank you. So I just do my thing as best as I can and if they don't get it it's their problem not mine. I have enough of my own.
    Thank you for bringing to light the issue with those antibiotics !!!! When I read that about cipro a huge light bulb went off in my head. The memory of that drug and my reaction came flooding back. Now I can pinpoint with complete accuracy when and why my problems started. Thank you soooo much.
  • I do not know anyone who only has FM! It seems to create many more illnesses as we go along. I have stopped trying to explain this to anyone who does not have it. I have had it for 38 years and for so many of those I wore myself out even more trying to come up with ways to explain it! It is not possible and it is not worth my energy! I just do the best I can, which is not acceptable to me at all, and try very hard not to complain! I appreciate this article so much because it comes closer to what I experience everyday! It does help to know I am not alone and have a safe place to discuss it! Gentle hugs to you all! Thank you for your words of comfort and encouragement! Keep a smile......we are NOT WIMPS...........we are all in this together!
  • Everything you described. Just woke up and hobbled into the bathroom. Now sitting up in bed and my upper back feels like it's in a vise. Have to work in one hour. Thank God I telework today but even that is tiring
  • @csd50854

    I get that burn in my legs. Like a match just got lit under my skin
  • Yes you just described how I feel! My neck, shoulders and arms feel like I tried to pick up a house! Stairs are a nightmare!! I was recently diagnosed with Rheumatoid Arthritis so I'm trying to distinguish between the two which symptoms go with which ailments. I dread getting dressed every day because I know I will be completely wiped out when I get through. All of this compounds my depression!!
  • I'm sitting here in tears as I read this for so long I thought all of this was in my head as the doctors first described it and my husband is the worst to criticise me still today. I have been fighting this for so many years I cant remember when it started. It got so bad I had to retire at 59 because I was about to loose my job due to inability to keep up. I had worked there for 25 years but no sympathy from the upper management so I just retired, so glad I had some retirement it got me through till my disability went through. I was lucky it went through the first try. I hated being at home as I could not do anything there either. I have cried for 2 years now about how my job retirement went. I didn't realize I was so sick till I did quit. I put all the blame on management but now I see it was due to my failing health I just couldn't accept that fact. I have all the same symptoms that all of you have posted. I just wish I could get my husband to understand. I feel so alone.
  • One of the comments I read mentioned the feeling of your skin burning. (I think the username is Rarmom) I too have that and it is painful and annoying! I've been diagnosed with fibro for about 10 yrs now. I suspect I've had it since a child. I remember hearing my mom always tell me to stop being a hypochondriac! She had no idea and also was dealing with my terminally I'll brother. My dad took me to the doctor one day because my mom refused to. She didn't think anything was wrong. My hips hurt sooo bad. I don't remember the exact age but somewhere between 9 and 12. Of course the pediatrician couldn't figure it out.
  • @MaryGarr I'm sorry you have to go thru that with your husband. Would he believe or understand if a specialist explained ? Fortunately for me, my husband has 2 siblings with fibro and he's more used to it. I don't think he or anyone truly gets it tho. Especially children! If you look ok on the outside ...that's good enough for them lol!
    Support groups and friends are helpful. I'm a person that believes in prayer so that comforts me alot!
    I will say a prayer for you!
    Janey
  • I have just recently been diagnosed. I am happy and sad at the same time. Happy because I am not going crazy. Sad because this is the worse. I have been reading the comments. I wanted to say thank you. They have been very helpful. I do have a dew questions if anyone can answer. How long does the flair ups last? Does the weather change make anyone's worse? Any feed back would be helpful. I can't sleep at night, it seems to be worse at night. My neck burns so bad feels like I am on fire. My hips feel like I am a 500lb person. The spasms last doe hours, they come back to back like contractions. I feel like I am losing my mind. It is nice to see that their are other people that are going through the same thing. Sending prayers for everyone. Thanks for letting me share.
  • I was officially diagnosed in 2011 but know I had it years before that. Just like the article says, I am constantly surprised by new pains and sensations. It is unreal. I have more of the bruised feeling all over where it hurts to be touched with any amount of pressure. But I have foot pain and one shoulder in particular that feels sometimes like it might burn right out the back. I have TMJD, endometriosis, And IBS. My IBS is always out of whack and it doesn't matter what I eat because it's so unpredictable. I get headaches almost daily. I am so blessed to have an understanding husband who supports me as much as he can. The author of the article talking about how her fingers hurt like they've been broken and haven't healed properly is exactly how my fingers feel most of the time. Then recently I had a month of major breast pain and thought "what the heck is going on?!" I looked online to see if other fibro people have it and sure enough it's just one more pain that can show up. Chantilee- I definitely notice flares with weather changes and flares for me can last a week or a month or longer. There's no rhyme or reason. They can worsen with stress. Our daughter recently had spinal fusion surgery and I went into a major flare from the stress but I had to push it aside as best I could because she needed me but it takes every ounce of energy I can muster and tons of prayer. It is so nice to know that I am not alone. Prayers for all of you out there with fibromyalgia and chronic pain. Keep hanging in there!
  • @Chantilee I responded to your question in my comment but wasn't sure if you'd see it so I thought I'd reply to your comment too. But yes I definitely have more pain and issues with weather changes. And flares don't seem to have a defined length of time. It seems to vary for me often depending on what's going on in my life. The breast pain I had lasted a month but the foot pain I have has been ongoing with very little relief. My sleep goes in cycles too where I have times I can't sleep for anything and other times I sleep pretty good but can barely drag my body out of bed. It's really a daily struggle and every day is different or has a different pain or has something new to experience. But if you have faith in God you can get through every day. Doesn't mean there won't be tears or frustrations but you know you aren't alone!
  • Exhaustion, miserable, tightness, pins and needles, memory loss, lack of fight... daily struggles. It's everything I can do to make it thru a 10 hour work day. When I get home, I'm basically useless. It's so unfair- to me, to my hubby, to my grandkids....I think back to when my children were young and the energy I had then, though I pushed myself then. It's only gotten worse over the years. I do not like it, I do not like it here, there or anywhere....
  • JennJenn Member
    edited April 2018
    Do any of you have pain in the upper\mid back that makes it hard to breathe deeply? I have mostly had pain in my lower back but now its near my right shoulder blade, rib area front and back along with my chest. Its also sending pins and needles everywhere. Also my right ankle has been painful and swollen for months after my dog caught my feet with her runner cable and knocked me down. The drs do pretty much nothing except give me muscle relaxers, cymbalta and tell me to work out. Ive been walking alot more since its warm now but sometimes even walking is too much. Im 33 and have had this diagnosis since late 2016. Lost my job, and most of my life since then.

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