5 Frustrations With Fibro

May is Fibromyalgia Awareness Month (with May 12th being awareness day). Today I thought I’d cover some of the frustrations with fibro. Okay, so the frustrations are potentially limitless, but I thought I’d pick just 5 to explore. Let’s not be greedy now! Perhaps you experience these too, or maybe they will help give an insight into life with this condition.

1. It’s unpredictable.

Plans are made to be broken with fibromyalgia. It’s a different experience for everyone, but you may have some tolerable days, maybe even some good days. You may have unpredictable flares that last anywhere between an hour to several weeks. You may have more unbearable days than you can count. I can’t tell you how I’ll feel in a few hours, let alone tomorrow or whether I’ll be able to follow through on plans for the next week. This can have a knock-on effect to mental health, relationships, friendships, social life (what social life?) and family. Just like with stoma problems and migraines, symptoms of fibromyalgia can be hugely unpredictable; it’s highly impractical, not to mention monumentally frustrating. 

2. There’s no cure. 

Okay, so maybe we’ve already given up hope for a magic bullet of a cure, but it’s disheartening to think this situation is ongoing. It’s frustrating not finding things that can help symptoms, or prevent flares. There’s no cure, and there’s very little help for managing things day to day. It’s hard to accept that when you just want to feel better and reclaim some semblance of the life you used to have, only to find there’s no way to ‘fix’ the problems, only manage the symptoms. I get frustrated feeling like I’m missing something, frustrated when doctors and specialists say it’s ‘all part and parcel of fibromyalgia’ and therefore nothing can be done. We have to advocate for ourselves and keep pushing if we think there’s more to the story, whether that’s another medication we want to try, or other diagnoses/deficiencies alongside fibromyalgia that haven’t been adequately investigated. 

3. The relentless chronic pain & exhaustion.

Exhaustion is overwhelming. It’s bone deep. Those with fibromyalgia and/or ME/CFS will likely know this all too well, that it’s just not being ‘tired’ or worn out. It’s shattered beyond belief. Brain fog and problems with concentration are part of this and are hugely frustrating; I find the inability to think clearly, make decisions, write, focus in general to be some of the most annoying issues, perhaps because I’ve always been more brain-oriented with writing/reading, rather than sports-oriented or hands-on with my interests. In addition to that, chronic pain can be a longtime companion, forever irritating in its relentlessness, bringing you to tears at times, making you question your ability to keep going.

4. ‘But you don’t look sick’.

It’s an invisible illness. For the most part, we probably look fine. On the outside we’ll put on a smile and try to keep going, showing the world what we want them to see. On the inside, we may be crumbling. It’s hard to be believed sometimes, by those around us or medical professionals. We can also worry too much about what we think others think. I find it incredibly difficult to use a public disabled toilet for this reason; I look fine and others must think I’m just jumping the queue of the normal toilets, rather than that I need this one because I have a stoma. I’ll be the first to give up my seat to someone else on the bus, and that’s expected as I look ‘fine’, and I won’t ask anyone else for a seat when it’s busy even if I’m in agony and about ready to fall over. It can be a very isolating experience. 

5. I feel guilty. 

I feel guilty for so many parts of this experience. For not doing enough, for not achieving anything with my life. I feel guilty for losing my job due to stoma surgeries and that fibromyalgia changed the playing field once again to keep me out of work. I feel guilty not knowing where to go from here with money/jobs/career. I feel guilty for days when I just get by. I feel guilty for feeling frustrated or miserable about it when I know others have things much worse. I feel guilty for times when I smile.

A purple butterfly, the symbol for fibromyalgia.
The butterfly – The symbol representing fibromyalgia.

Do you have experience with these frustrations? What would you add to the list?

Caz  ♥

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75 Comments

  1. May 4, 2019 / 3:36 pm

    I’m so sorry you have all these issues to deal with. I can’t imagine. I wish I could wave a wand and you’d have none of these issues.

    Big hug. ♥

    • May 6, 2019 / 3:28 pm

      Thank you, Sandee, that’s very sweet of you. I know others have things a lot worse than I do, and I’m grateful for everything I do have and am able to do. I think there’s still quite a lot of uncertainty around what fibromyalgia can really be like for people though, so I wanted to post this in the hopes of providing a little insight (while hopefully not sounding like too much of a moan!) I hope you have a good week ahead 🌷
      xx

    • May 8, 2019 / 4:08 pm

      I tried it for you Easter It was not possible to comment 1000000 times I thought I should not visit you anymore. (blog) All the best for good, for Easter.(((se/nz)

  2. Ashley
    May 4, 2019 / 4:16 pm

    It’s so sad that in so many people’s minds there seems to be this hierarchy of the conditions in which people are “allowed” to be ok and those in which they’re not. Fibromyalgia has got to be bad enough without having to face people’s uninformed opinions.

    • May 6, 2019 / 3:29 pm

      You’re absolutely right, Ashley. And those uninformed opinions can be really damaging. Thank you so much for sharing this, great comment! xx

  3. May 4, 2019 / 4:28 pm

    If I may offer you one thought is this – give yourself permission to – just be you – you didn’t bring this on yourself on purpose. You’re doing the best you can and even more. You’re sharing your story with other who I’m sure find a lot of comfort, hope, and are inspired by you. You’re a strong woman, but of course at times it’s normal for you to feel guilty, or any other emotion you’re going through, just let it pass and remind yourself and give yourself permission to – just be you. Give yourself permission to love yourself with all your imperfections, you’re wonderful. <3

    • May 6, 2019 / 4:21 pm

      Give yourself permission to just be you – that’s a powerful suggestion. Thank you so much for your wonderful comment & your compassion, Masha. You have a very kind heart.  ♥
      I hope the week ahead treats you well 🙂
      xx

  4. May 4, 2019 / 4:34 pm

    I’m 48 and have been going to my GP for more than 25 years, the list of ailments endless…always the same diagnosis, depression. Just 3 years ago I finally got a rheumatologist diagnosis of fibromyalgia…and everything fell into places. My GP has bent over backwards since my diagnosis, and I’ve been able to understand what’s happening to my body. I hate having fibromyalgia, or as I call it, the life sapper! No two days the same, ever! Great post.

    • May 6, 2019 / 4:28 pm

      I’m so sorry you’ve had so many years of being fobbed off and struggling with so many symptoms. I’m glad you found that rheumatologist and that your GP has been compassionate since the diagnosis in trying to help. The problem then comes with having no cure, and just having to try to manage it. The ‘life sapper’, a good way of putting it! How are you finding management, Andrew? Have you been referred to anything like Pain Management (I was referred via my rheumatologist in the UK)? Thank you for sharing a bit of your story, I really appreciate it & I’m glad you liked the post, I’m just sorry you know these frustrations all too well yourself. x

  5. May 4, 2019 / 5:48 pm

    Too much to deal with. I think the ‘guilty’ part being the worse. We shouldn’t and yet….

    • May 6, 2019 / 4:29 pm

      Exactly, we know on some level we shouldn’t but it’s hard to not feel guilty for various aspects. Thanks for the comment – I hope this week is kind to you x

  6. May 4, 2019 / 5:59 pm

    I have rheumatoid arthritis and I thank God every day that it’s not fibro. I have a friend with it. She smiles, does her best, is unreliable and I love her. I hope a cure arrives.

    • May 6, 2019 / 4:31 pm

      I’m sorry your friend has it, too. I’m with you in hoping for a cure in the not-too-distant future. Got to have hope.. 🙂

  7. May 4, 2019 / 7:10 pm

    This was so heartbreaking to read and I’m so sorry. I can relate to a lot of the things you’ve said. I also hate cancelling plans due to unexpected pain and I also completely understand feeling guilty. I feel, like you, that I’ve lost so much through my illness. But I’ve also gained a lot too. I hope you feel the same. Keep pushing.

    Coralle xx

    • May 7, 2019 / 4:00 pm

      I’m sorry you can relate, too, but I hope that helps in knowing you’re not alone. I do feel the same with knowing I’ve gained, despite having lost a lot. Sometimes we need to change our perspective and remind ourselves to look at those things, especially during the darker times. Thank you so much for the fab comment, Coralle 🌷

  8. May 4, 2019 / 7:56 pm

    WOW! What a timely message! People have told me, “You don’t look sick. You must be feeling great.” Even though I may not look sick on the outside, when my arthritis pain flares, I feel very sick. Thank you for your messages of encouragement and hope. Have a blessed day!

    • May 7, 2019 / 4:02 pm

      It’s hard to know how to react to comments like that, isn’t it? What do you tend to say? I’m sorry you know some of the frustrations there with invisible issues like arthritis, which I imagine can be very debilitating. Just because we may look fine (what does ‘sick’ even look like?) it certainly doesn’t mean that’s how we feel. Thank you for sharing, Melissa 🌷

  9. May 4, 2019 / 8:20 pm

    I don’t have anything to add to this because I don’t have it, but I think it was brave of you to be so honest and give us a glimpse of what it’s like. It must be difficult not to be able to plan, and I guess some people are more understanding of that than others, so you find out who your real friends are.
    Please try to ask for help when you need it though. I don’t know how it feels to be doubted because my disability is visible, and anything else I might struggle with is automatically assumed to be connected with that. There will always be ignorant people about, sadly, but that shouldn’t stop you getting that seat etc if you’re not having a good day. There are plenty of kind people out there too. XX

    • May 7, 2019 / 4:17 pm

      You’re right, there will always be ignorant people around but we shouldn’t forget that there are also plenty of compassionate, helpful people out there too. Thank you so much for the lovely comment, Kirsty, it’s much appreciated  ♥
      xx

  10. May 4, 2019 / 8:44 pm

    It’s amazing how good people can be to each other – yet how awful we can be in a flash. Great heads up, Caz, for all of us to always err on the side of compassion

    • May 7, 2019 / 4:19 pm

      Very temperamental and changeable folk, eh. There can be a lot of ignorant people, but a lot of helpful, lovely people out there, too. Thanks for the great comment  ♥
      xx

  11. May 4, 2019 / 9:08 pm

    A fantastic summary, so well penned Caz! I can relate to every part of it and empathise with you completely. When I get really frustrated I try to remind myself to refocus on what I’m able to achieve, not vice versa but that’s often impossible when the frustration level is high. Loneliness would be another frustration or similarly battling brain fog/inability to concentrate when trying to prep for classes. Do you write for magazines? If not, you should! Marie xx

    • May 7, 2019 / 4:37 pm

      That is very kind of you, thank you Marie! I don’t write for magazines – anything that I could generate an income from would be very much appreciated since losing my job, though I never thought I’d be capable of writing anything well enough. It made me smile that you think I could. I’m just sorry you know these frustrations all too well, and you’re right, loneliness and brain fog are definitely strong contenders for that list. Brain fog is actually one of the most annoying things for me, perhaps because I’ve always been more brain-oriented (ie. writing rather than sports). I should have emphasised that more on the list. Maybe I’ll make an adjustment to the pain/exhaustion point… I’ll do that now. Thank you so much for your brilliant comment  ♥
      xx

  12. May 4, 2019 / 10:44 pm

    This invisible illness can be so disruptive to one’s life. Meanwhikle everyone around you lookat you and think you look fine.
    Thank you for sharing this.. I must admit I have been naive about fibro.

    • May 7, 2019 / 4:39 pm

      I think fibromyalgia is something that’s only more recently unravelling in terms of the extent of the condition. You’re right, invisible illness can be very disruptive and yet those around you may not have a clue what you’re going through. Thank you for the comment, it’s much appreciated =]
      xx

  13. margaret
    May 5, 2019 / 12:32 am

    I don’t have fibromyalgia but I have been dealing with a physical issue that is causing all of these. 1 through 5. I was thinking about you today after you left the circumcised comments hehehe 🙂 I wrote it all down in a draft, my “invisiblyme” post. 🙂 What my diagnosis is, the issues, and here I pull up my reader and you have covered them all right here. It is phases too. Like right now my exhaustion is debilitating and nobody gets it because they aren’t feeling it. 🙂 So, 3, 4, and 5 on the list above are in high gear. The exhaustion too goes past the physical at a point and becomes mental exhaustion too. If that makes sense. Thank you so much Caz for all you do to bring awareness to things that people don’t get unless they go through it 🙂 I thank God for you Caz. I ask HIm to bless you and to continue to use you to help other people 🙂

    • May 7, 2019 / 4:49 pm

      I’m sorry you can relate all too well with these yourself. I wrote this with fibromyalgia in mind but they do of course extend to many chronic illnesses, sadly.
      Mental exhaustion is, in my opinion, as bad (perhaps even more frustrating when you’re more brain-orientated in what you do day to day), as physical exhaustion.
      Margaret, your comment is so incredibly kind and I’m so grateful to have you here and for your support. You mean a lot to me. I’m always here if ever you need to chat.  ♥
      xx

  14. May 5, 2019 / 1:05 am

    Sending lots of love, Caz. If love was the cure, you’d have it…
    xoxoxo

    • May 7, 2019 / 4:51 pm

      Aw, lots of love to you too, Carolyn. If only there were cures for so many illnesses… just imagine how much brighter the world would be!  ♥
      xx

  15. May 5, 2019 / 4:38 pm

    That comment “you don’t look sick” is a sign that someone isn’t understanding what’s going on INSIDE the body doesn’t always show itself OUTSIDE the body. Frustrating, yes. I felt that when I was in a severe depression. You’re spreading amazing awareness about fibro here, Caz xo

    • May 7, 2019 / 5:04 pm

      Just being more mindful and open to the fact that the outside doesn’t always represent the inside would go a long way I think. Thank you for the lovely comment Christy! xx

  16. May 5, 2019 / 5:25 pm

    I know the exhaustion, though I guess the exhaustion I know is different. Constant, bone deep, but, mental rather than physical.
    I’m sad about the guilt you feel along with it. Just know that no matter how you feel, you are awesome, and that people love you.
    You inspire me (yeah, seriously, though it’s not a fair thing either)
    Love, light, glitter and lotsa hugs

    • May 7, 2019 / 5:29 pm

      I have that too with mental exhaustion. I think it can be just as bad, if not more annoying, as physical exhaustion, especially if you’re more brain-oriented (like with reading/writing rather than sports or hands on interests).
      You are very kind, your comment really made me smile – thank you so much, Eliza, you’ve brightened my day. You’re pretty damn awesome yourself, never doubt that!  ♥
      xx

      • May 14, 2019 / 6:09 pm

        I’ve been planning on replying for like forever…..
        Sending bear hugs your way…
        I hope that you have a bit of a break…
        Love, light and glitter

        • May 16, 2019 / 5:13 pm

           ♥ I hope you have a lovely Friday & weekend ahead. Just read your recent post & it sounds like you’re doing well on the not-using front & on eating well, you should be proud! xx

  17. May 5, 2019 / 5:33 pm

    I truly hate you have to go through so much! You are amazing because no matter what you are going through, your courage and strength shines through in all you do!

    • May 7, 2019 / 5:32 pm

      I hate that you have your own struggles, too, Alyssa. We just have to “keep on truckin'” as they say! Thank you for your incredibly kind comment 🙂
      xx

    • May 14, 2019 / 6:12 pm

      I just wanted to ditto this Caz.

  18. May 6, 2019 / 4:49 am

    Yes, I understand this very well. Hugs! 💕💕💕

    • May 6, 2019 / 10:37 am

      I’m sorry that you do 🌷
      xx

    • May 6, 2019 / 2:54 pm

      Such a beautiful image, thank you! 🙂

  19. May 6, 2019 / 7:14 pm

    I have a friend with fibro. She does have a problem with people thinking she looks healthy, the inconsistency (ruining plans), and the rest of them. The invisibility of it has a social cost.

    • May 7, 2019 / 5:33 pm

      A ‘social cost’, that’s a good way to word it. Very true, sadly.xx

  20. May 6, 2019 / 9:27 pm

    Thank you for sharing this.. Awareness is the key to compassion and respect!

    • May 7, 2019 / 3:15 pm

      You’re right, it’s vitally important. Thanks, Richa! 🙂

  21. May 7, 2019 / 4:13 am

    Mommy agrees, what social life? that ended long ago. Altho’ cuz she looks fine, nopawdy unnerstands. Sendin’ purrayers

    Luv ya’

    Dezi and Raena

    • May 7, 2019 / 3:10 pm

      I’m so sorry you understand it all too well, too. You’re right, ‘nopawdy unnerstands’, I think it’s hard to unless you’ve experienced it yourself. Thank you so much for the comment  ♥

  22. May 7, 2019 / 7:40 pm

    Thank you for sharing this, Caz. I definitely don’t know enough about fibromyalgia and your post has given me some insight into what you have to deal with on an ongoing basis. Please don’t give up on a cure being found: over the years, cures have been found for all sorts of illnesses that were once thought of as untreatable. And above all: never, ever, ever feel guilty for smiling. Instead, give yourself a pat on the back every time you manage to smile through another difficult day.

    • May 8, 2019 / 4:44 pm

      If I can reach just one person to raise a little awareness then I’m incredibly pleased. If one day I can learn to swap the feelings of guilt for a pat on the back then that will be a good day! Thank you so much for your lovely comment, Liz, I really appreciate it ♥
      xx

  23. May 7, 2019 / 9:17 pm

    What a fabulous post Caz! You do such a wonderful job of describing some of the many frustrations of living with fibromyalgia. If people could see how we really feel it would be so much easier. Your post can help them to “see” what our outer appearances don’t show them. Sharing on FB and Twitter. Sending hugs your way!

    • May 8, 2019 / 4:22 pm

      It really would help to ‘see’ the issues, the symptoms, the huge knock-on effect conditions like fibromyalgia can have on life. Thank you so much for your lovely comment, and for sharing! I’m really pleased you liked the post 🌷
      xx

  24. May 8, 2019 / 4:10 pm

    I tried it for you Easter It was not possible to comment 1000000 times I thought I should not visit you anymore. (blog) All the best for good, for Easter.(((se/nz)

    • May 8, 2019 / 4:46 pm

      Oh no, I wonder why you couldn’t comment? I’m sorry you had such problems. I know you have to access the blog directly (not through the WordPress reader). This comment definitely worked though 🙂
      I hope you’re having a good week so far.x

  25. May 8, 2019 / 6:52 pm

    Hey Caz,
    I know it’s hard but you need to look after yourself regardless of other’s opinions. I’m certain that people would give up a seat if you said you needed to sit down. But, I can imagine that you don’t want to ask, you don’t want to be your illness contrary to your public persona which is, at least to strangers, that of a fit and capable young lady.
    You can’t control people’s prejudice.

    As an aside have you tried omega 3/6 supplements? I’ve found them so helpful to my particular brand of brain fog!

    Take care lovely xx

    • May 9, 2019 / 4:14 pm

      You’re right, we should look after ourselves more regardless of what others may think, or what we think they may think. And absolutely, we can’t control people’s prejudices. I use to take Omega 3 a few years ago but stopped. I actually bought some the other month & I have this huge tub of gel caps sat on my desk that I haven’t opened yet – thanks for the reminder! It’s great they help you with brain fog, I’ll have to open mine & keep my fingers crossed they improve my brand of brain fog too! 🙂
      xx

  26. May 8, 2019 / 7:58 pm

    sad to hear of the suffering this conditions brings to you and others!
    may there be some ease offered with peaceful, conscious breathing,
    and a medical breakthrough in effective treatment, soon 🙂

    • May 9, 2019 / 4:05 pm

      Conscious breathing & being mindful, grateful of the small things, can all help bring our souls a little peace and respite. Thank you for the lovely comment  ♥
      xx

    • May 9, 2019 / 4:04 pm

      What a lovely thing to do, Pamela, I think this new award is a brilliant idea! Thank you so much for the nomination 🙂
      xx

  27. May 9, 2019 / 4:15 pm

    Thank you for liking a couple of posts on my blog – because that led me to yours 😀 I use my blog differently and have chosen not to refer directly to my own invisible health issues over there but that doesn’t mean I’m not interested in how others manage their lives with these challenges. I’m looking forward to following along 🙂

    • May 12, 2019 / 4:22 pm

      I understand you keeping your health issues separate from your blog. Thank you checking out mine & the comment, it’s much appreciated! I hope you’re having a lovely weekend, Sandra 🙂
      xx

  28. May 9, 2019 / 6:52 pm

    This is an awful disease. I admire your strength in dealing with it as you do.

    • May 12, 2019 / 4:24 pm

      I don’t think I do a good job of it a lot of the time but it’s a constant learning curve and work-in-progress. Thanks, Aixa!  ♥
      I hope the weekend is treating you well! xx

  29. May 10, 2019 / 3:30 am

    Guilty, guilty, GUILTY, that’s my number one! We so shouldn’t but do! Perfect 5 to pick, Caz. I was nodding in agreement with all. 💜

  30. May 10, 2019 / 12:58 pm

    Caz! I hope my previous comment made it on… with your billion followers! This is the post I need to re-blog. I don’t see an option… I’m going to copy/paste the entire blog post and link it back to your site! This must be read by everyone for Fibromyalgia Awareness. I’m also going to share this on FB, our group needs to read this! Here I go!

    • May 10, 2019 / 1:46 pm

      Aww thank you, Kim! You rock! I’ve taken another look & I can’t see a reblog button either, though I know I added a plug-in for this after earlier feedback about people wanting one. Hmmmm. Will investigate & see if I can try again!xx

  31. May 10, 2019 / 10:18 pm

    Caz, absolutely outstanding post, as always!! Thanks so much for this, you captured what so many of us feel and deal with on a regular basis. ❤️️ Stace

    • May 11, 2019 / 3:07 pm

      Aww thank you so much, Stacey, I’m really glad you liked it. I’m just sorry you know these sorts of frustrations all too well yourself 🌷
      xx

  32. May 12, 2019 / 11:41 pm

    Thanks for sharing about your experience with Fibro! I experience fatigue, but it sounds like it might be more debilitating with Fibro than FA! I also hate that, because it’s an invisible illness, you don’t feel justified in using handicap accommodations. A funny thing I’ve noticed is how spirited friends and family of disabled people get about people parking in the handicap spot who “don’t look handicapped.” Righteous indignation in our honor, haha. I’m the disabled one, yet I’m the one saying, “They could have heart issues or something we can’t see!” I’m glad that you are positive despite the circumstances and can fight the fatigue enough to be a blog writer and, more generously, a blog reader, too! Hugs ♥

    • May 13, 2019 / 3:50 pm

      “Righteous indignation in our honor” haha, love it! I do struggle quite a bit with keeping up with things, especially on the blog front, but it’s important to me and the only thing I have now really, so I try to put whatever little energy I have into it and reading other blogs too. Thank you so much in sharing your thoughts on this, even though I’m sorry you understand the fatigue and the invisible illness frustrations all too well yourself, too. I hope the week ahead treats you kindly, Lily 🌷
      xx

  33. May 31, 2019 / 11:22 am

    I can relate to your medical problems very well. I have neuropathy pain, joint and other nerve pain from chronic Lyme disease. It is a show stopper. People don’t think I am ill and can’t understand why I can’t get around. They think I am being lazy, hypochondriacal, and that I would be fine if I went to the gym. Western medicine has no cure. I am just now getting expensive treatments at the Morrison Center in NYC that help tremendously – for the first time in over 10 years.

    • May 31, 2019 / 11:53 am

      I’m sorry you know pain & illness all too well. That’s the problem with invisible illnesses, when you can look fine & nobody understands; I don’t think anyone can really understand such conditions & symptoms unless they’ve experienced it all themselves. It’s awful you’re having to spend so much to go to the Morrison Centre, what kind of treatment is it you’re getting? It’s wonderful something is able to help, which must be a relief after so long, but it’s devastating that there’s typically so little help or support when it comes to pain and chronic illness. Thank you for sharing  ♥

      • May 31, 2019 / 12:08 pm

        https://www.morrisonhealth.com/ Their site can explain it. The idea i to get my bodies immune system to start kicking in. Vitamins, medications, vitamin C drips, and diet. It is working and I feel about 70% better. I was housebound, had no energy. Now I can walk for short distances. I feel liberated.

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