Sick From Showering (With Fibro)? This Might be Why.

It near never fails. I’m having a good pain/symptom day and am excited to get some things done. I hop in a shower and like clockwork, halfway through the symptoms start. By the time I finally manage to get dressed, I need to lie down. I’m dizzy, have vertigo, am light headed and nauseous, again. This isn’t a fluke, instead it’s more like one of the myriad of regular symptoms I live with, with Fibromyalgia. And once I’m down from one of these episodes, I’m down for hours.

I’m pretty accustomed, now, to living with a wide range of crazy, inexplicable and life limiting symptoms. Typically, we are never able to find a root cause, nor any successful treatment. Instead, we just add them to the list of limitations.

Enter my new Cardiologist. He has truly been a Godsend. After way too many Specialists, he was the one who finally diagnosed my Dysautonomia. So as we sat there, I decided to throw out the question: Why do I always nearly faint when I shower?

And, he had an answer!!! Oh my word!

So forgive the fact that I am neither a Clinician, nor as able to explain as eloquently as he, but here is what he told me:

One of the hallmarks of Fibromyalgia is the inability to regulate your body temperature. Dysautonomia is a dysfunction of the Autonomic Nervous System; which is also responsible for maintaining body temperature, but is also responsible for regulating breathing patterns, heart rate and keeping a steady blood pressure. (etc.)

Take two conditions that both make body temperature regulation a huge challenge and what do we do? We step into a hot, steamy, super humid shower.

The hot water hits and floods our body. So what does our body do? It pulls the blood from major organs and sends it to the skin, to try to regulate that change of temperature to the skin. With less blood flowing to the heart, lungs and brain, those feelings of faintness, nausea, dizziness and lightheadedness set in.

While he couldn’t necessarily explain the reasons why it takes me several hours to recover, my own theory is that it’s just another way that the Fibro affects us; either slowing down the recovery time or making the very incident more profound.

Either way, finally armed with an answer, here are some of the things I now do:

  • Turn down the temperature of the water
  • Shorten the shower
  • Use a vent fan
  • Leave the bathroom door open
  • Leave the end of the shower curtain open
  • Open a window
  • Leave a shower for last, in case an episode does present
  • Use a shower chair or install safety handles
  • Shave outside the shower (Terri from Reclaiming Hope suggested a Flawless Legs shaver)
  • Get to the floor if an episode hits

I can’t necessarily say that I’ve eliminated the “shower effect”, by doing these things, but I can say it no longer happens every single time I shower.

Much like everything else we do, it’s not a fix, it’s about trying to better manage the symptoms we live with, to make life better. And I have to say that not needing 4 hours to recover from every single shower is better.

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

54 thoughts on “Sick From Showering (With Fibro)? This Might be Why.

  1. Great post Space! I used to have the same problem with showering. I did some of the same things you did – turning down the water temperature, making sure the vent fan was on, and if I started to get woozy but couldn’t get out yet, I’d open the shower curtain a little. I now have a stool in my shower just in case I have issues. I also stopped shaving my legs in the shower, so that helped cut down on how long it takes me. Since I’ve started doing all these things I don’t usually have a problem anymore.

      1. I got me one of those Flawless Legs shavers. It doesn’t shave as close as a razor, but since I don’t need to use water or shaving cream it’s easier to use. Sometimes you just have to compromise….😁

      2. LOL. Ahhhhh, how right you are, Terri!!! Great suggestion, thank you so much!! Do you mind if I update my post and include this? I think your suggestions are super helpful! ❤️

    1. I don’t know what I’d do with out my chair. Kinda happened by mistake. I was trying to get the soot of the wall above my tub that the candles I burn make when I’m in the shower. So I put a fold up stool /step in my tub to stand on. I have a major issue with light Brite white . I left the stool in the tub and was going to pull it out when I thought wonder if I can shower and sit on the stool to shave. I loved it . I also have arthritis everywhere and my body especially my legs lock up I have bad knees and I’m only 55 next week. The highlight of my day is sitting in the steamy shower at the hottest setting and shaving my legs ,brushing my teeth , scrubbing my feet ECT inhaveba little routine. When I get out I’m 100 percent pain free. You don’t realize your always in pain you just don’t know till you have none for about 20 to 25 min. Every night I’m free.

      1. Sounds like you’ve created the perfect little haven in your shower. I think that’s great! Especially given it gives you freedom from the pain. And let’s face it, freedom is Heaven!

  2. Insane right? I thought I was losing my mind. I actually never knew this was part of the symptoms of fibromyalgia. Stacey you were the first one who mentioned this previously and I’m so very glad you did as I was relieved to know it wasn’t my mind playing tricks on me. I now for the past 2 years leave the door open and the shower curtain as well. I also love hot water but go back and forth with changing it so I don’t over heat. I also don’t stay in as long as I used to. As always Stacey I thank you for sharing your experiences with us as it definitely makes us feel connected and united with our fibro struggles. 🙏🏻❤️

    1. Thanks Sandy, I’m so glad you liked the post!! I was struck down for hours yesterday (after showering) and decided it was time for that discussion to become a post.
      And that’s exactly it, Sandy….I have had so very, very many symptoms that just don’t make sense: from my fingernails all lifting off (not a fungus 😉), to my hair breaking and falling out, to my eyesight suddenly becoming so blurry I can’t see.. I go to the Doctor and either they’re dismissed, quickly labeled as “part of it” or I go through a multitude of tests to arrive at no answers. It leaves me feeling like an unintelligent hypochondriac sometimes. So when I feel like this, I imagine so are other people “like me”. That’s why I share. It can be a very frightening and isolating life to live. So if I go through something, I throw it out there, because I never know who may be going through what I am. So as you have said several times: we’re stronger together ❤️ I hope you are having a manageable day.

  3. I so rebate to everything that you share. You are probably the one who has given me more Information in what I have and experience than any of the drs I’ve seen. You have no idea how much you have helped me. His bless you. Praying for you and hoping today is a better day!

    1. Thank you so much for this! I got some kind of a mystery illness and as a result showering makes me feel terrible. Now I stand in the shower with the water running but don’t get wet. I run damp hands through my hair and then put shampoo in. I wet the bar of soap and then soap up my body. When all that is done I turn the temp down to just warm and quickly rinse off. It’s a lot easier and I don’t feel as bad afterwards.

      Thanks so much for the explanation. It makes me feel less crazy to know what’s going on with my body and why showers are so difficult.

      1. Sounds like you’ve got a system down. I’m glad that makes it easier!!
        What’s crazy isn’t us, it’s the fact that the simple act of taking a shower can be disabling!!! I’d have never considered it before I got sick!
        I’m so happy the explanation helped-I often find that makes it so much easier-to at least know the why!! Sometimes explanation can help us fix things, sometimes not-but at least we know and we know we aren’t alone!!

  4. Interesting…..I shortened my showers and always open the bathroom door as soon as I step out. Like I can shower in 3 minutes, I timed myself! I would feel weird after a hot shower, but I never connected it to my fibro.

    1. Exactly what I’ve been experiencing for years! It’s not my imagination after all. I’ve learnt to shower and wash my long hair in about 3 minutes too. Who knew!

      1. Sorry for the delayed response, I was on vacation!
        I totally agree! Isn’t it crazy? I was SO grateful to get the answers and to know I wasn’t just losing my mind. I cannot even tell you how many times I had to crawl out of the shower or ended up on the floor after showering 🙄
        Definitely not your imagination, as you can see by SO many others here. Just an insanely obscure symptom no one ever helps with!
        Me too! I’ve got my shower time way down (and way cooler).
        Glad the post offered you some validation!!

  5. Crikey, Stace, that’s not fun to experience, and very dangerous too. I’m glad you had a specialist to figure it out and you’re right about how it’s a case of trying to find new ways around health issues and problems, like a challenge we need to think outside the box for. A portable seat in the shower can be great for a lot of people, too, and the rest of your suggestions of what you’ve been trying are fantastic for those who experience similar. I think there should be an asterisk by leave the door open* though – only when there are no guests in the house 😂
    Caz xxxx

    1. Oh Caz, how chronic illness keeps us on our toes! Oh, well actually, for this post, maybe not. Although as you suggested, maybe a shower chair might help keep me on those figurative toes (instead of my tush). I am going to update the post now. A few people have suggested that and it’s a really great idea. Bravo on adding the asterisk. While I’m most often alone, other people may not be, so I’d hate for there to be some awkward surprises. LOL. By the way, I just finished the book you recommended: This Is Going To Hurt. It was great!! Thanks for that! I absolutely love to read, but have a hard time finding great books. I really enjoyed that one.

  6. I appreciate the information about how our neuro system is affected. I knew about the heat regulation issues but didn’t really know if the heart rate, etc. I’ve been having waking heart rates at the doctor’s. This last physical, I had thought I may need to go on a blood pressure med, but it was fine. The doctor has passed it off as stress at certain times. But, I think it may be more due to this issue.

    1. I normally have low blood pressure. At one point, when I was taking Buspar, I got really high blood pressure-who knew? Doctor’s didnt…..It was disturbing…..It’s like one big guessing game to ever know what’s actually going on, right?
      I am completely convinced, (even if there wasn’t data to support it), that Fibro is a Neurological issue; I can literally feel my nervous system constantly on fire……
      I’m glad you didn’t have to go on more meds, Katie!

      1. Have you explored the connection between fibro and bad polio vaccines? Post-polio syndrome affects bones, muscles, nerves, connective tissues, heart. Check it out.

  7. I was diagnosed with Fibromyalgia back in the late 1980’s. I lived with it and used to love to take hot baths, when I had overall pain after a days a nurse at the hospital. It always helped me then. Then in 2008- 2010, I was diagnosed first with MS and then Rheumatoid Arthritis. I developed a sensitivity to being in hot water. I rarely take baths anymore and shower with warm water. It is how I cope with self care. Whether it is due to Fibromyalgia or MS your article really hit home with me. With MS one does have problems tolerating the heat whether in the shower or outside with warm/hot humid weather. They have cooling vests that one can wear outside. I usually have to lay down for 15-20 mins after showering to cool off and quit sweating from the exertion of just showering. Having the shower bench as a backup in the shower I also do. I wonder if it would help patients you bring up with Fibromyalgia to use a couple cold packs to help cool the body a bit faster after showering. Maybe one behind the neck, or a couple under the arm pits or stomach area. Just an idea to see if it would help here as well??

    1. Hi Joelle! I’m really glad the article hit home! Thanks for reading and responding.
      That’s a great tip about the cooling packs……Sometimes, I can’t get dressed afterwards and just have to hang out in a bra & undies until I cool off. Thankfully no one’s home though. LOL.
      I always knew about temperature regulation being a struggle with MS, I just hadn’t realized it was such a big piece of Fibro until I had had it for a few years. The hot flashes are crazy!
      It’s great to know about the cooling vests, I didn’t realize there even was such a thing-so that’s helpful to know! Thanks!

      1. Hi Stacy. Thank you for sharing your fibromyalgia experiences and tips through your blog. This is helpful. I wonder if anyone else with fibromyalgia experiences pain sometimes from wearing clothing, especially a bra? I have not mentioned this to the doctor, anticipating I would most likely be told it’s “all in my head.” Remaining hopeful while seeking helpful information.

      2. Hi Anita,
        Thank you so much!! I’m really happy you like my blog-I hope you’ll sign up to follow it. 😁
        This is *not* all in your head!! In fact, it’s called Allodynia! How’s that?! I’ll even name it for you! While I don’t personally struggle with this (right now), I know tons of people with Fibro do. It’s pretty common and pretty difficult, for people with it, to find clothing that doesn’t hurt….
        It’s so tough to be told “it’s all in your head”, I’m sorry. That phrase makes us question our sanity and mistrust ourselves-which isn’t fair at all. We know what we feel and experience.
        I’m happy to meet you and happier still you find my tips helpful.
        Hang in there ❤️ Stace

  8. Hi Stacey, came across your posts and all I can say is yes, yes & yes to all these things. I have been struggling with all the many symptoms of fibromyalgia for a while now. Seems like it’s always something new. Lately it’s the squeezing or tight feeling in my ribs. I don’t hear many people complain about that I don’t know if it’s just me. I completely relate to the shower thing. I wait to take my showers at night so usually my husband is in the bedroom, just in case. I think I have changed almost my whole wardrobe thanks to fibro. If it’s not soft or stretchy I won’t wear it. Anyway, just wanted to say your tips are great and thanks for the helpful info.

    1. Hi Tara! So great to meet you!
      What you’re describing sounds like Costochondritis…..? I’ve had it diagnosed a couple of times, but am fortunate that it hasn’t turned permanent. With every new symptom, that’s always the big fear….I know of a lot of people who have/had it though-so it’s pretty common.
      I totally get it. I spent almost 18 months either unable to shower with help, or unable to shower without supervision. But I can finally do it alone now, very carefully. If I’m not up to it, I’ll wait until my Husband is home. What can we do, really?…..But I had enough episodes of laying on the bathroom floor to have finally learned not to chance it anymore. 🙄 The last time, I had to rely on my Schnauzer to wake up my Husband for help!
      I’m lucky enough to not be stuck with Allodynia, for now. Which is good, because I’m stubborn enough that I still like to somewhat dress the way I used to-although I do miss heels and work clothes. But jeans and Chuck Taylors are still cute. I cannot tolerate anything even remotely scratchy though.
      I’m really happy you liked the tips I offered and hope you’ll sign up to follow my Blog.
      Thanks SO much for reading and commenting, Tara. Be well ❤️

    2. That feeling could well be costochondritis it’s another hand in hand symptom of people with fibro. I had it diagnosed 4 yrs ago. The pain took 8 weeks to diagnose and it progressively worsened to a point where I couldn’t swallow. I was admitted to hospital for a week and they gave me steroid injections around my heart ( between the ribs) costochondritis cannot kill your but boy is it painful. It’s basically inflammation in f the cartilage between the bones.
      Hope this helps. I’ve not had to have any other hospital treatment since but I do have deep tissue massage often and I invested in a sea salt hot tub at home. That helps a lot.

      1. That was what I suggested, too, Claire. Costochondritis. Thanks for telling people about your ordeal.
        I have had it twice-but not the way you’re describing. Wow, as painful as mine was-you had a much worse time of it. It’s incredibly difficult to breathe with it.
        Hopefully you’re through with having bouts with it.
        We had considered getting a hot tub (I hadn’t heard of salt ones before), but I struggle with body temperature regulation and regular hot tubs always give me UTIs (for some stupid reason)……

  9. I am so glad that I am not the only one going through this. I was diagnosed with fibromyalgia and I am 43. Went to so many doctors before they finally found out what it was! I myself find that taking a shower or a bath is very difficult! It seems strange to others. They think my goodness it’s just a shower! For them..maybe but not for me! I have to have room temperature water, not hot and I just get in and get out as quickly as possible! Some of the easiest things for others are so difficult for us! You feel guilty and if I hear one more person tell me you need to get out of the house more, I think I’m going to just give them a piece of my mind. They know I have fibromyalgia but they don’t understand how it works! Thank you so much for this post Stacey! It really means a lot to know you are not alone! It sucks to have this illness but it is what it is and either people can understand it or just stay away from me! I have good days and bad days and I’m grateful for the good days but on my bad days I just want to be left alone! Thanks again Stacey and God Bless you my dear! Praying for you and all those others who suffer from the same thing!

    1. Hi Selah!!
      You are definitely not alone! It’s astonishing how easily we can go from working, independent individuals to people who need a nap from a shower. Crazy, isn’t it? But I’m with you! And believe me, it drives me crazy.
      As for the getting out of the house thing, oi vei!!! It makes me nuts! Believe me, I never wanted to live in a tightly controlled bubble-but that’s how I get any semblance of life! It’s incredibly insulting and deprecating for people to suggest that some fresh air, yoga or celery will cure us. But i think people just don’t know what to say when we’re so sick for so long and Doctors can’t help. A decade later and every time I speak with my Mom she asks me the same question: there’s nothing the Doctor can do? I know she means well, it’s just frustrating for us; like we don’t do enough to help ourselves or that getting better is optional.
      As you said, I focus on the good days and try to no longer cry away the bad ones. It’s an ongoing battle.
      It’s great to meet you! I’m really glad you liked the post and hope you’ll sign up to follow me for more posts. I truly appreciate your comments!
      Be well ❤️

  10. Exactly! Always something new. All these tips are great. I too feel squeezing in my ribs on right side and a lot of like pressure left side behind breast. Loose soft clothes are the best. This blurry vision is a pain. I often feel a lot of pressure behind my left eye. I always shower with the door open and at times I have sat in the shower because I got too weak. Again all these tips are great.

    1. Thanks so much, Tracy! I’m glad you liked the post! Thanks for reading and commenting on it. It’s always nice to hear other people’s experiences. It reminds us that we’re not alone as we battle a pretty rotten illness.
      It’s great to meet you! Be well ❤️

  11. Stacey! Thank you for naming this crazy fibro affect that doctors don’t know about. Its sad to know others are hurting with it but also a relief that i wasn’t losing my mind. What a wonderful validation and helpful info you are sharing 😀 thank you!
    For me it was 3 years of supervised showers with Luke warm or cool water to avoid all these symptoms. All my joints cried out for hot water but they had to ache cuz it was better than fainting, nausea etc.
    I’m so glad you are sharing this info with people who are suffering. Fibro is a really hard existence. Praise God ive been set free of this and many syptoms, in Jesus Name. Its my heartfelt desire to help others experience healing too. I really encourage anyone to check out awmi healing center and the healing is here conferences, 2020 was absolutely amazing. God is so good. I learned so much, so life changing. My prayers are with you and all the Beloved people here desperately looking for relief from endless suffering, countless unexplained symptoms and pain that won’t quit, depression and money issues and oh u guys know and my heart breaks 💔 😢 praying for you all for completehealin, full health and long life. Abundant blessings to you Stacey and all those coming to you for guidance they can’t get elsewhere.

    1. Sorry for the delay, we were on vacation!! (including a technology vacation)
      You’re welcome, I’m so glad I could help. I have often found that I end up teaching my Doctors. They may have the medical degree and education, but I have way more time to focus strictly on my own health and the research it requires to have any quality of life.
      Many times, I get answers accidentally. Like from my Cardiologist.

      I agree having Fibro is incredibly, incredibly difficult and often depressing. It affects so many facets of life……It’s not an easy existence for any of us.
      Thanks for reading and commenting! I’m glad the post was helpful ❤️

  12. Hi STACEY I appreciate this comment section so much I have learned that I am not alone. Having Fibromyalgia is so difficult and isolating. I have so many symptoms that are unexplainable and I suffer alone like many fibro warriors. For years I have had temperature issues and I didn’t even relate it to Fibromyalgia. I often get cold chills in the middle of summer and it usually happens when I am warm in a comfy chair or couch and go upstairs and lay in my bed to sleep. The temperature change from being warm to walking upstairs and getting in my cold sheets totally sends my body into cold chills that hurt every muscle in my body. My husband knows when I say “oh o it’s happening again” he runs to get 3 or 4 thick winter blankets and piles them in top of me. After about 10 minutes of cold shakes my entire body feels like a huge fibro flare and the recovery can take days. I also get this in the shower but it’s a little different. In the shower when the warm or hot water hits my skin it burns. The entire section where the water falls on feels like a burn on my skin …this is the only way I can describe that feeling. It goes away rather quickly but it’s difficult to take a shower the water has to be really warm almost cold and if it’s to cold than the shakes begin. It’s definitely not easy. For me living with fibromyalgia is isolating and very sad. The only one I have is my husband and it must be hard on him too. I look forward to these articles to know I am not alone and that their is hope. Thanks so much

    1. I’m very unwell today, Mitchelle….so I have to save a proper comment for tomorrow (or when I can get back on my feet), but for now…..I just quickly wanted to say you are NOT alone. Even when it feels that way…..there are SO many of us, just like you. So I will write you back, but until then, I’m sending you some love and strength. ❤️Stace❤️

    2. Okay, Michelle….I’m semi alive. I was just too sick yesterday to put two words together.
      Oh gosh, honey. I wish I could hug you (gently).
      It is so isolating, I completely agree with you. Very lonely and very isolating….and unless you live with it, you can’t understand. I’m sorry.
      I agree, the symptoms are so widely varying and seem all encompassing…..As soon as one calms down, a new one seems to manifest. The new symptoms alone are exhausting.
      I’m really happy your Husband is supportive. That makes a huge difference. Yay on him!!
      I have to admit, I haven’t heard of the extreme temperature struggles. That is certainly *not* to say others haven’t, but it’s not something I’ve personally dealt with (yet).
      Although I do struggle with either end: super hot or super cold. Just not as bad as you seem to. That all sounds awful.
      I think it’s so compassionate and intuitive to understand how hard it is on your spouse. While, clearly, he loves you and takes good care of you; this isn’t the life we planned. Your Husband or mine.
      But he’s still here, just like yours and that speaks as loud as can be.

      I’m so grateful you found me/my Readers. They are SO amazing ❤️

      You are NOT alone, Mitchelle. Even when it feels so suffocating, know we all feel the same.

      I hope you’ll enjoy forthcoming articles and will continue to find all the comments just as helpful.
      Welcome home, my new friend.

      All my love,

  13. I too have a problem with hot baths or showers. I love a good hot bath most of all. My hear rate tends to go up considerably while in the tub. I can’t remember where I got my information from, but I was either told, or I read it somewhere that drinking really cold water before, and even during my baths would help with this. It tends to help with not getting over heated, which in turn helps keep the heart rate from jumping up too high. I drink really cold water before my baths and showers, and it really helps me.

  14. I appreciate your article. I have the same problem and will use your suggestions. It’s just nice to hear from people having similar situations. So many people don’t understand. Thank you.

    1. I’m glad you found the article helpful, Cassandra! I continue to use those same tips and it continues to help. Thank God. I spent way too much time laying on the bathroom floor!!
      And it really is a comfort, isn’t it? ❤️

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