What does fibromyalgia feel like?

Last week was the start of my fibromyalgia flare up and it struck me that I use that phrase often but it doesn’t really mean anything to a lot of people. Fellow spoonies probably identify with it and those close to me know it as “uh oh, something bad happened” but what does it actually mean? How does it feel?

So this week, every time I experienced pain too noticeable to ignore I thought about what it actually felt like. Here are some of my feels from during the week:

1. I feel like I’ve trapped a nerve in my neck; I can’t turn it to the left so I’m a bit worried about driving to and from work.

2. I feel I’ve just had a tetanus shot in my right arm. It aches, but I can identify a sharp, bruised pain right in the middle of the ache.

3. I feel like I’ve slept on a cold, hardwood floor for two nights. My lower back hurts and the rest of my body aches – it feels like I need a good stretch.

4. I try to stretch but bending feels like I’m trying to bend a plastic ruler, I can’t really do it and I fear if I force it, I may snap.

5. I’m itchy. All over. My arms and legs are itchy, my eyeballs are itchy, the palm of my hand is itchy.

6. I feel like I’m walking through treacle. It’s not impossible by any means, but it’s hard work.

7. I feel tired. So flippin’ tired. Like I went for a really long country walk that ended with a hike up Scafell Pike.

8. I feel like I’ve been in a car crash. Not a bad one, but my bones feel bruised all over.

9. I feel like I walked in to a table and bashed my knee. Both knees actually.

10. I feel like my muscles are made of jelly, like they have no strength. Please don’t ask me to lift anything.

So that’s what it felt like this week. And all the while, I’m smiling and working and no one would have a clue to look at me that inside, everything’s just a bit sore.

I’m not telling you this so you feel sorry for me, but just to show you that – for many of us with fibromyalgia – every day is a bit of a struggle but more often than not you would never know. There have been many many blog posts addressing the “but you don’t look sick” mindset. It’s true, most of us don’t. But that’s mainly because we’ve managed to perfect the ability to manage our pain and our day-to-day life. We don’t do the things that make pain worse, we just do the things we need to do to get by. And quite honestly, I’m feeling pretty proud of all of us right now.


53 comments on “What does fibromyalgia feel like?

  1. I have been following you for a bit on FB but rarely get a chance to ready your blog. I just have to say, this list is totally me. Everyday. My flares make me crawl in bed and not want to leave! I needed to see this as I am currently struggling being in a new country, with 4 kids and a husband working in another city. It is so frustrating not being my old self enjoying everything about living this amazing life. A single weekend visiting the world’s most amazing Ice and Snow festival put me in bed for three days. 10 days traveling Japan put me back three weeks. Glad you can share… I find it so hard to share my struggles!

    • Hi Kat, thanks for taking the time to comment and welcome to my blog! I can’t believe you’re managing fibro, a new city and FOUR KIDS! It’s no wonder you’re exhausted. I’m a firm believer in taking the time to adjust your routines, it will get easier once you’re back in control. I think it’s just so difficult when it’s all change because you don’t know how to keep your flares at bay. Good luck, and I hope it gets easier. Feel free to share your struggles here any time! x

    • I lead a similar life with similar pains 🙂 Kat. We should become online pen pals. I have no friends anymore since I’ve left home and can’t get out anymore so a new friend with similar understandings would be great. Just a thought 🙂

      • You guys totally should! Also I highly recommend getting involved with twitter if only for the spoonie community. It’s a really good way of making new friends who understand what you’re going through, and chronic pain ‘twitter chats’ take place each week so you can all follow the hashtag and have a group discussion. Definitely a great way to feel sociable without having to leave the house! 🙂

  2. #4 is right on, and something I experience daily but NEVER knew how to put into words. Thank you for that!

  3. You describe it so well. I hope you get over this flare and back to feeling as well as possible soon.

  4. I recently quit my job because I am fortunate to have a loving husband that understands and supports me. I work in call and after just one shift my body feels like all of it. The itchy palms cracks me up…I get it in my arms too and sometimes my it bands, Eve my mid back like my skin is stretching or pulling. I hate being felt sorry for or I mystery putting a name to all of this, especially one that gets so many eye rolls and isn’t taken seriously. But I am grateful for blogs like this and people likebyoubwho can put words to what people feel. If anything it’s nice to know I’m not alone

    • Thanks Sarah – and you’re totally right. It *is* exactly like a stretching or pulling feeling that makes me itch! Good description! x

    • Beverly Runnels

      December 2014 I broke out in a rash that lasted for 14 months. It had to be connected with Fibromyalgia because it was diagnosed by the derm dr. as pysriosis and that is brought on by stress. Well, my life is a 24/7 stress!!!

  5. Walking through wet sand or deep snow … so much more work than simply walking should be. I keep learning that symptoms I have may be related to the FM … I assumed my neck pain was due to an injury when I was young. The back/hip pain and the migraines are the worst. Thank you for spreading knowledge about this disorder.

  6. Mary Delaney

    I thought I would post that I started Low Dose Naltrexone (LDN) 4.5 mgs. It is working. Cheap. Get a script for it and fill it at a specialty compounding pharmacy, as it is not available at this low dose. It seriously reduced my pain. Not the weakness, but I am telling all of you… I feel pretty darn good. $33.25 for one month. Total! It is a new treatment that is used for MS and HIV. I started it last night, so this is day one. Web MD talks about it.

    • Thanks Mary. I’m in the UK but I’ll check it out.

    • So interesting Mary that you mentioned Naltrexone. I have some in my cabinet! It’s actually an old drug used to treat alcohol & narcotic addiction. But, my research discovered if combined with another drug ( cant remember name) it created a new drug called Contrave. I presented my research to my psychiatrist & he agreed that it would work for my Fibro. Sounds like this low dose might be better. I was on 50mgs 2X/day. I’ll find out more. Thank you!!!

  7. Excellent post! We need more of this type of ‘personal perspective’. Not only for those who don’t understand, but this is wonderful encouragement for those of us who know exactly what your talking about!

  8. I have lupus that when it flares it affects my muscle tissue and joints primarily. This sounds similar. The fatigue closing my flares is overwhelming and a bad flare fatigue can keep me in bed. To others I just look lazy or hung over. Lupus means very little to most people. I too at many times get only the bare essentials of life done. Which can leave my house messy, my kids missing me, and my kids disappointed if I’m too tired to take them to their events and can’t find them a ride. When the flares are over, a bad flare can find me feeling better but a house in absolute disarray, bills waiting to be paid, maybe some parking tickets, and overdue errands to run. There is very little help. Most people don’t know and wouldn’t understand even if they did the significance especially of a bad flare or multiple smaller flares strung close together and all of the hurdles they bring, even and sometimes especially when you are feeling better.

  9. Sally Dyde

    I agree with Kristine. Being able to relate to the ‘personal perspective’ makes you feel less alone. I find the simplest way to describe it to others, “it’s like having the flu, but without the cold.” (proper flu!) Most people can relate to that feeling of every little part of your body aching and hurting, so bad, you can’t get out of bed. Obviously there are so many symptoms, but to say more does sometimes sound so exaggerated. I’m very lucky to have an understanding partner and friends.

  10. Heather Jordan

    I cannot believe the complete exhaustion that comes over my whole body that it is so full of pain that it actually makes me throw up and then I think I have the flu but it is just sheer exhaustion from the pain and doing any little thing exhausts you! It is a thief of our independence because sometimes I can’t stand straight but also I cannot sit in a tub because it hurts to bend that way and you can become stuck!!

    • I have exhaustion now really bad and it feels like my deltoid are being punched. I do get so tired I feel nauseous. I also can’t win , I have RA to. And a back and neck injury . My back was bad enough then be told I have fibermyalgia. I feel sleeping is my worst enemy , but it’s also good. I live reading everyone’s posts. I’m newly diagnosed , and not taking this so well. I struggled to become a nurse at 46 and at 52 I began to feel this pain. I to have lost friends and become’s hard to socialize when you only feel good one day a’s have a caring doctor now and my treatments begin. Thanks for letting me have yall on my block.

      • Oh Cynthia, I feel your pain. (Literally!) It’s really tough at the beginning but even if the pain doesn’t ease, the coping strategies and knowledge of your body makes it easier to cope with. Find those friends that understand and keep them close, and socialise doing things that don’t make you worse. I hope the blog helps you find some activities for a life less physical! x

  11. Lorrayne Royce

    I have fibromyalgia, and I hurt all over the worst. I also itch like crazy. Tonight it’s my elbow, I scratch it and it hurts, and the itch don’t stop. Sometimes my bones even hurt, aching and throbbing. I even have a hard time combing my hair, it hurts my head. Everything you described is exactly right on, how it makes us feel.

    • Oh Lorrayne I can so identify with what you are saying – sometimes I itch so much that I scratch until it bleeds but still no relief.I have scratched one of my palms so much that I have a callous built up because I scratch. The best thing I’ve bought has been a back scratcher which can get to the places on my back that I cant reach. I can also identify with Heather – I should love a bath but when I had my last one some seven years ago I got stuck for some time trying to get enough energy to get out!! The fatigue knocks you out I know but just have to have a snooze to help.

    • Has anyone tried FIBRO BY WELLNESS PEOPLE? I have been on it for a month and am getting my life back. I heard about it on Facebook. I also take magnesium, niacin, B-1, B-12 Liquid (CVS Pharmacy), Fish oil, Vitamin D and MSM everyday. I have been able to go out and actually shop at two stores in a row. I am very tired and have to lay down after, but before the Fibro I couldn’t even get out of the house. I do everything I can to get the most sleep. That also determines how I will feel the next day and stop when you are tired and lay down, not just sit.
      It is a miracle for me and I hope that they never stop making it.

      • I’ve never heard of this Marie. I’ll check out!

      • I have heard of this but because I already take a lot of supplements I decided against it. Question – what does and form of magnesium do you take? I started on 850 mg about 6 weeks ago. Life changing improvement – far less pain, virtually no fibro fog, and more energy and better mobility. Sadly, I had to cut back to 600 mg because it upset my stomach (very unusual for me). So now instead of 90% better I am only 70% better. But I’ll take it!!!

  12. Hi. I can relate to all of you and your ailments. I have been suffering this now for 6 years some days worse than others, but I have never had a diagnosis of any sort. I feel as if the doctors think its all in my head and I get so frustrated with them its depressing me.

    • Oh Barbara, I know the “it’s all in your head” feeling so well. It takes most sufferers between 1 and 3 years to be diagnosed and even then treatment and support is patchy. It gets easier to manage as you start to understand your body and your triggers. Good luck 🍀

  13. Much love and support from another! #2 is how I have been trying to describe my right arm for two weeks now….and this last Saturday just dived into a full blown flare. I am glad I ran across your page and wish you the best. The struggle is real!

  14. Great post! This is such a good idea. I think I may try something like this to share with my partner.

  15. Hi ! Is the Harrah on Twitter spoonies? I never correlated the itchiness to the fibro. I keep a back scratcher in my living room and my bedroom. Saves steps…lol…I also have psoriatic arthritis and I always have contributed that sheer exhaustion from that. It has been under control for almost a year with a change in a drug but that’s when I noticed just how bad the fibro is (10 years). I even moved to south Florida from Delaware a year ago to get away from the cold!

    • Moving away from the cold is on my wish list! I only recently discovered the itching was linked. Is your question about the twitter hashtag? If so, yes, search for #spoonie but there are loads. I’m actually doing a post next week with lots of links to hashtags and good forums so keep an eye out!

  16. Jeaneen Moore

    I could cry reading this.

  17. Pingback: Your fibromyalgia toolkit | A LIFE LESS PHYSICAL

  18. Susan Cruickshank

    This is a good description of how I feel.

  19. I feel like someone took a baseball bat and beat me from the base of my neck to my hips. Just when I think I may be able to get up and around, the baseball bat comes out and it starts all over.

  20. Yes, this is great! Not the flare bit, I’m so sorry you’re going through one at the moment. What a great way to document what it feels like though. I think I’m going to have to do this myself

  21. After a year of them telling me it was peripheral arthritis from borderline IBD they told me 2 weeks ago that they think it’s Firbo because after a year they still see no signs of inflammation. So I am trying to figure all of this out. I work full time and have 2 kids. For me, it all feels like joint pain – like bad tendonitis or a sprain. And I never know which joints it will strike or when. Or how many in a day. Some days I feel great, but some days my hands hurt so bad I can’t hold a toothbrush or a cup or squeeze a bottle of shampoo or help my daughter zip her coat. Or I can’t use my hands to pick up my kids and I have to hook my arms under their arms and pick up with no hands. It’s hard to work, fold laundry, cook.. If it’s my shoulders, it’s a stabbing pain like a rotator cuff injury. Or if it’s my knees, every step hurts and stairs are really difficult. Some days it’s just 1-2 joints, but some days it’s like everything. I am looking for natural ways to treat because all of the drugs (Cymbalta, Lyrica) scare the heck out of me.

  22. I go to work everyday and look normal. I wish people knew how strong I am for looking like i’m not sick because I don’t have flareups anymore. The pain and fatigue never stop. I just hope there is help for us someday.

  23. Stefanie Harris

    I appreciate your descriptions. I often can’t find the right words to describe how I feel to others, mainly my family. I feel terrible that I can’t be the mom and wife that I used to be, and I feel worse that I can’t tell them where or why I hurt and why I’m so tired. I sometimes think that they think that I am just being lazy, which makes the depression that much worse. I am an elementary teacher, so I am pretty good at “fake it til I make it” while I am at work. I don’t have the energy to do it at home too!

    • I think that’s so common Stefanie. We fake it at work, and then we’re so exhausted when we get home that we don’t have the energy to pretend any longer. And really, around the people who love us most, we should have to. I hope this helps your family to understand. Check out my Fibromyalgia Toolkit which has some links to some great blog posts that help explain things to those around us. Good luck!

  24. I also think we are great actors.

  25. Hi there!
    I’ve been blogging about mental health for about a year, and I’ve newly been diagnosed with fibromyalgia (last month), so of course I’ve started to search for fibromyalgia blogs. I found yours and am really enjoying reading through it; I can relate to a lot of what you write – this post really hits the nail on the head!!
    Being able to read others’ stories is really helping me accept and understand this diagnosis – so I guess I just wanted to say hi, and thank you. 🙂

    • Thanks so much for your comment Lily. I’m so glad you’ve found my blog useful. Sorry to hear of your diagnosis, but sounds like you’re totally doing the right thing but trying to learn more about this very weird condition. Will go and check out your blog now! x

      • Yes, weird is the right term for this condition! I’d love for you to stop by my blog 🙂 It’s private, but if you request access I’d be more than happy to let you in (due to the sensitive nature of some of what I post about, it’s private just so that there’s no danger of people who I know in ‘real life’ discovering it). xx

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