5 ways to describe scoliosis pain

5 ways to describe Scoliosis Pain

5 ways to describe scoliosis pain

Living with a chronic back condition such as scoliosis is tough. But what does it really feel like living with scoliosis? What does scoliosis pain feel like? For those of us that live everyday with the condition, it can be hard to explain to those close to us how it feels. It can be difficult for others to understand what it’s really like. I tend to just get on with things and I try to take control of the condition by being as active as possible. Because of this though, many people just don’t realise what I deal with everyday and how scoliosis has affected me.

I thought I’d attempt at articulating what scoliosis pain is like for me – if you can relate, please let me know in the comments below. It’s good to talk and support each other 🙂

It’s more than just back pain.

Scoliosis Quote - Scoliosis is more than just back pain

What a lot of people don’t realise is, scoliosis affects the whole body.

The result of having a curved spine has an impact on EVERYTHING ELSE, not just the back.  I don’t just get pain in one part of my back. My rib cage is twisted round, which can affect my breathing.  Bras and tops don’t fit properly and I feel self conscious in skin tight tops or tops that show my back/shoulders. Scoliosis also affects the nerves so I often get random sharp nerve pains in various parts of my back. I also get numbness down my leg and tingling down my arms and in my hands.

Scoliosis causes muscle imbalances in the back, so mostly my scoliosis pain is caused by tight muscles down one side of my back (the “weaker” side).  As a result, I get regular muscle spasms down one side of my back and around my shoulder blade where my back just feels tight. Since surgery, this is MUCH BETTER but I still get it, usually after doing some intense activity like running or if I’ve been walking round all day.

It’s uncomfortable

For me, this is the worse than the pain. My scoliosis makes it so hard to get comfortable EVER. Don’t get me wrong, it was worse before I had surgery as I had a large rib hump which meant I found it uncomfortable leaning against pretty much any chair.

After surgery, it’s different but it’s still hard to get comfortable. I still find it uncomfortable leaning against most chairs as I still have a slight unevenness to my ribs. I also have a protruding shoulder blade and screws that stick out of my back. All this makes it painful/uncomfortable to sit on most chairs without a cushion.

In addition to this, as my back is now fused “straight” I can’t mould my back to fit to any seat/chair. I sit poker straight which means it can be uncomfortable when I’m in a car or on public transport.  I don’t mind this, I’d rather this than the alternative (have my scoliosis getting worse) but I can’t really remember a time that I was truly comfortable.

It can be frustrating

I try to be as active as possible, I think as a way of controlling my condition and managing the pain. But I find it frustrating sometimes that I can’t do as much as everyone else. I try my hardest to go to the classes I want to go to at the gym and and to go running. Sometimes though it can be hard to keep up and I get frustrated. I wish I could run as fast as everyone else without injuring myself or causing a new pain for example. Every time I think I’m getting somewhere with my fitness, my back is there to remind me to slow down. Whether it’s a new injury, numbness or back pain. When my back starts hurting though, I tend to push through and do as much as I can. I refuse to let scoliosis beat me.

The emotional pain can be far worse than the physical pain

Scoliosis Quote: The emotional pain caused by scoliosis can be far worse than the physical pain.

Even though scoliosis is a physical condition, the emotional pain it causes can be far worse.

Being diagnosed with scoliosis at 14 and growing up with a physical deformity was tough. I was constantly paranoid that people would notice my rib hump so I would wear baggy clothes and avoid activities where my back would be on display, like swimming. At 14, I felt like a freak and would often cry in my room at night. The psychological impact of scoliosis is often overlooked. Without a doubt though, having scoliosis has crushed my self esteem and self confidence, which still impacts on me today.

It affects you 24/7

Scoliosis Quote - Scoliosis affects you 24/7

Having scoliosis is a huge part of my life. It will always be there. It can’t be cured, it’s a chronic condition. I don’t like to use the word disability because I don’t see it that way. But in a way, it is a hidden disability. To look at me, you wouldn’t know what I go through everyday. As soon as I get out of bed, I have pain and stiffness. I find it awkward to do basic tasks, like tying my shoelaces and putting my socks on or getting comfortable because my back is fused. I’m used to it now and I just get on with it, but it affects me every day.

How does living with scoliosis affect your everyday life? Please share in the comments below 🙂

Louise X


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42 thoughts on “5 ways to describe scoliosis pain

  1. Hi Louise

    My name is Linda I am a young 62 year old and have been living with scoliosis since 13.
    I found your blog very uplifting, just hearing someone else talking about the symptoms you are experiencing and I am without realising it was due to my back.

    I had my op in del a pol hull wen I was 16yrs long time ago now I also cried and got called names and was very self conscious. Nowadays I’m too old to care I wear what I want I have my hair longer at one side in purple or whatever colour I fancy living with the pain is hard but at least I’m still alive lol.
    So glad I read your blog.

    Linda xx

  2. “I often get random sharp nerve pains in various parts of my back. I also get numbness down my leg and tingling down my arms and in my hands.”

    Do you still get this pain now after 6+ years post op? Sounds like sciatica.
    I get that too in my lower back, but without the numbness or transmittent pain. It feels like someone just pinched or stabbed my lower back, and then after a few seconds I begin to feel ok again.

    You also say you have a hard time tying your shoelaces, clipping your toenails, washing your face in the sink, but you also say you can reach to touch your toes? How are these tasks so much harder post op if you can still reach your toes?

    Do other post op scoliotics with an L3 fusion have the same difficulties as you?

    Thanks for your informative blog.

    1. Hi Jeremy,
      Thanks for your comment 🙂 The numbness down my leg is a fairly recent thing, I think it’s sciatica too but at the moment I’m not sure what the cause is. I’m going to physio next week and have been referred back to my surgeon so they can check it out. I did have some numbness in one of my thighs right after surgery but this improved over time. The sharp nerve pains and tingling/numbness in my back I’ve always had, even before I had surgery. Most of my back is numb! The tying shoelaces/washing face etc is awkward, I can do it but I have to do it in a different way to how I did it before surgery. I can’t bend and touch my toes, unless I’m sat down 🙂 I couldn’t do that before surgery though, I’m not very flexible!!
      Louise 🙂

  3. Can’t begin to tell you just what it means to read your blog. I have had my scoliosis from birth, part of my spine has no joints , so has always been in effect fused. Never had surgery, just had to live with it. All those odd pains and problems, both seen and not that you described were my experience also. Unfortunately, as I get older (just hit 60), the scoliosis is getting worse, as are the symptoms.
    I resent my scoliosis for making me wonky, I would be 2 inches taller and not over weight for my height.
    I am very thankful that halter neck dresses have gone out of fashion.
    Sad I can no longer go bra less (you are so right they never fit right).
    Hopeful that it gets no worse.
    Grateful for the chance to vent with people who understand.
    Thank you.

  4. This is the first time I have read about the pain, both emotional and physical, that truly describes how I feel. It made me cry as your explanation is validation of what I have experienced. I have spent my life trying not to appear weak or in pain. I am 61 and had my surgery at age 14. To this day I am so self conscious of my rib hump that I always wear loose jackets and sweaters trying to cover it. When I see a hard backed chair I know I am going to be uncomfortable and when someone tells me to look behind I struggle cause I am unable to twist around due to the fusion. Minor challenges but nevertheless lifelong ones. It’s always comforting to know you are not alone. Thanks so much for sharing!!

  5. I really want to thank you for this blog, I have scoliosis since less or more five years, because of my war with eating disorders and too fast growing up, it started like that, then i was siting not good etc.
    I am from Poland and we dont have actually that kind of blog, this is why i feel now speachless and i dont know, what too tell you to describe how glad i am for this blog on internet. Scoliosis give me much more emotional pain that physical and from several days it is difficult; this is great that you share about it.
    Thank you very much !
    (And sorry for my English)

  6. Hi Louise, I will be 40 in Oct and have had scoliosis since my early teens. At that time we were told it wouldn’t progress, if they only knew. I’m now on disability bcz of my severe curves (I have 4) and I too have a laundry list of things that if affects. The worst, as of late, is having to use a cane to help walk. The looks I get in public are emotionally tolling bcz they have no clue! I hate it. It has caused me severe anxiety to go out in public. I’m lucky if I leave my house 2x’s a week. I have to use a chair for the simplest tasks now: showering, cooking, dishes, getting ready. I’m not allowed to vacuum, sweep, mop, rake, anything with that motion. Can’t lift anything over 5lbs. Stairs are incredibly hard for me!! I HATE this. And the worst part is what it has limited me on what I can do with my kids (16 & 11). I can’t be a “normal” mom.

    1. Hi Carla,
      So sorry to hear of your suffering 🙁 Is there anything that the Drs can do to help you? Have you seen a Dr / specialist about your scoliosis recently? If not it may be worth it, just to see if anything can be done to help.
      Take care,
      Louise x

  7. I can definitely relate. I’m 56 years old with lumbar scoliosis and now, the beginning of osteoporosis. I’m constantly in pain. My peers and others judge me for taking the occasional pain pill to help with the horrific pain but they haven’t walked in my shoes! I do the best i can to live an active life but its a balancing act. I totally understand.

    1. Hi Gina,
      Thanks for your comment. I’m sorry to hear of your pain 🙁 I wouldn’t worry about people judging you, as you say they won’t understand and if occasional pain pills help you to manage a bit better then that’s a good thing. Keep going it sounds like you are doing well 🙂
      Louise xx

  8. I was told in 6th grade by the school nurse I had it and I had to take a note home to my parents who did nothing for it. I had no idea what it was until in high school when I was in colorguard and the instructor kept telling me to put my shoulders down. I wasn’t putting them up. So I looked into it. As I’ve gotten older it has gotten worse now it’s an S shape a chiropractor told me.
    I get random numbness and tingling in my hands and feet. I have really bad plantar fasciitis, sometimes where I can not put my left foot all the way down without pain. Sometimes I get a pain in my upper back like it needs to be popped but nothing works. Always have lower back pain. Plus it causes other issues for me. Headaches, migraines, depresstion, anxiety, stress, ibs, weight gain..no matter what I do I cant lose weight and probably more i am not aware of. At this point being 31 almost 32 I feel like there are no options.

    1. I am new to this blog, searching now because I am having pains, but I am sorry you didn’t get surgery when you were younger, but I think that if you go to an orthopedic surgeon you will be a candidate for surgery. You will be laid up for at least a month, learning to walk again, as well as swing your arms (in my case), among other things. I think they’ll probably give you the Harrington Rods (which I had installed at age 14 in 1993 at Valley Presbetarian in Los Angleles by Dr. Bernstein… who made me get up and DANCE with him in the ICU post op, right when I woke up, to make sure every thing was working correctly!). I have the best posture now tho, and grew 2 inches after my S curve surgery, waist to neck basically. I am looking at this website now that I am almost 40 yrs old, because after the surgery my right leg was shorter than the left, and finally my right hip is starting to hurt me in my older age 😉 they gave me a ‘lift’ (a piece of cork Formed to my foot that was about 1/2” tall to put in my shoe) to even my legs, but I live I California! So I only wear flip flops and Uggs! So I lost that lift years ago. It’s catching up with me. Anyways!! Go get surgery, it’s better than not. You will be shocked. It’s worth it, and don’t let them make u shave your ribs, it’s unnecessary and painful unless your back if super uneven…… good luck and thanks for letting me share and hopefully help!

  9. Just read your blog and can relate to a lot of your issues. I am 46 now and had the rod operation at age 13. They have since been removed. I also had a decompression op 5 yrs ago due to loss of feeling in my left leg which worked great.
    I think because I am very active people don’t appreciate how much effort things take.
    I can definitely relate to the clothes issue but have been lucky enough that my mom is a tailor so have a lot of clothes altered.
    I always wake up stiff and in pain and often say that I feel I need to be stretched on a rack
    Thanks for the time you have taken writing the blog it’s nice to know there are others.

    1. Thanks Hazel I’m glad it’s not just me – I agree with you that because I’m active people don’t really realise how bad my scoliosis is and the issues I have as a result. I hide it all well! Thank you for your comment 🙂

      Louise x

  10. I am thankful for your post. I am 30 years post op this year. The random numbness and pain are absolutely the worst. Running exacerbates my pain and numbness and it is so completely freaking random.I also am like you and breathing is just a pain in the booty when I exercise. I feel like such a dork when I can’t breathe… Really, breathing is something I am bad at? As for what other people think. I could care less. I have a severe case of the other people can kiss my twisted ass. So head high and emotions off.

  11. Thanks so much for writing about how scoliosis pain feels & I feel the same as long as you are active people don’t realize you still have some limits as to what you can do.

    I’m 43 & only found out in January that I have it. I had been going to chiropractors since I was a child & apparently it kept it from getting to bad. I was getting so tired of going all the time cuz I thought I just always had a bad back. I have the S so I’m on the mend….I found a fantastic chiropractor & im so excited as to how much relief I’ve already gotten. I eat healthy & take good herbs & vita mins to hopefully help grow back some of the cartlidage. I’m taking Ginger root & also Protandim from the Lifevantage company. If I have extra pain that I can’t handle I just take an extra Protandim that day. I’m feeling better everyday! Praise God! I’m sorry so many of you have it much worse I can tell! But I didn’t realize in the beginning how it was handicapping it can be till summer came & I wasn’t strong enough to just sit on a bike without it bothering me. I know some people don’t get it cuz last summer I was doing more but it had gotten so bad that I knew something wasn’t right & it was more then just a bad back. So I pray you all will find good help! But chiropractors can do wonders that’s for sure my chiropractor said if my parents would not have taken me as a child I would’ve been a serious case. I’m hoping to do more yoga for it. I do some but not a lot yet.

    Sending prayers for all of you! Sara

  12. I just went to the doctor and he never mentioned anything about any of the problems I have, but he did tell me I could not have more pain meds so I am a little upset with him and the president for that. I had surgery on my neck in 2001, did not help I have headaches and my arms go numb, tingling in my fingers, my head feels like it in a vice. So now with my back the doctor doesn’t really talk about any of the problems that are bothering me, I know I should find another doc but that would mean driving somewhere away from home and I don’t drive away from home . Have a bad phobia, with just about everything. Wouldn’t leave the house if I didnt have to . So that would be another doc I really really need lol. So I dont know if I should stay with him or check around here to see if another doc could help plus I am 62 years old so my poor old bones are getting brittle. I would like to meet the person that called old age the golden years , I’d kick them in the ass lol . Well I think I got off subject do thank you for listening

    1. Well I found out the pain in my side is from my scoliosis everything getting smashed on the left side of my back. My doctor wants me to go to another doctor but I can not afford to go. This is a bad time of year my husband’s work has slowed down. So on top of headaches and neck pain my scoliosis is giving me fits. Sometimes the spasms in the left side are a little more than I can take but I do,

  13. Hi Louise, I enjoyed your blog so much I can relate totally. I have only suffered with Scoliosis for about 15 years. I am 78 and still working part time. Afraid to quit because I’m afraid I might give in to it. People don’t understand when you’re crooked, you want to hide from the world. Thanks for yours words.

  14. I was diagnosed when I was 8 years old and had to wear a brace from 8-15 yrs old. I had one surgery at age 11, the MD hoped it would help straighten the bottom curve since I was still growing. But at age 15 the MD decided to do a second surgery to correct my bottom curve. I am in my 30’s now and I am so glad I had my surgeries. I know over the years I have learned I need to stay active as well. It is frustrating when you try to push your body but you can’t physically do what others can. I am never comfortable sitting either, my one shoulder blade digs into chairs. I hate riding in cars, I feel like I’m constantly adjusting my seat. I still get back spasms but they can last anywhere from 30sec-20min but then it just goes away. I enjoyed you blog and I know I can relate. I have never met anyone in my life so far that has had scoliosis or atleast had a brace and surgeries as I have. I am glad to read what you have said and know I don’t only have these problems as an adult.

  15. Louise…thank you for your blog…it was really helpful to have it voiced for me…i am 65 and had my surgery at 14…mine was an experimental fusion, not Harrington Rod but a bone was removed from my leg, ground and fused into my back…it is still holding but my ribcage is still twisting badly…i have tried to ignore having scoliosis but the emotional and physical pain is much more now…thank you again for your article…it helps me feel less alone in my struggle

  16. You nailed it with your description of scoliosis pain. My story is in your blog. I am 63 now and retired in June. Not a minute too soon! Lower back pain and fatigue have always been a problem, but recently I have had weeks go by with pain that has jumped from a number 4 to a 9. When I hit that level of pain I can not hide it anymore. I have been to the doctors and it’s always the same. Do the strengthening exercises and the stretches. I do them, and have always been active, but lately they seem to be part of the problem. Over stretched my abductors twice. Extreme pain comes the day after. The window of opportunity for relief is getting harder to find. We’ve all heard, when exercising, don’t go past the point of pain, which of course is what most people with scoliosis start off with. Oh well. Have to keep trying!

  17. This was very uplifting almost to just read others stories and similar situations that they’ve felt so close to my own. I have struggled with scoliosis since I was 12 and am now 36. I had the rods put in at age 12 and then removed at age 22. For whatever reason my body rejected the stainless steel years after surgery and I became very ill. I don’t have a day that I don’t wake up and wish I still had the bars inside the pain now from EVERYTHING I do and don’t do!! My curve didn’t stay in place and I have actually shrunk in height since. My bone graft site is almost just as painful as the rest and I can lean into something and it’s a sharp pain that seems to hang around for hours. I was always active and moving and am a single mother who didn’t see my life as is I did attend school and have debt for days and my pain has become so life altering that I can’t even find full time work or make enough to make it by!!! The physical side of this I fee inside my mind is noticeably obvious and hate hearing “u look fine” what’s wrong or your back again or your weak feelings on the legs from forcing myself to stay stood up. It’s misserable and not to mention all the opiate issues this world is having now all the sudden I am not ever able to find relief without going outside of norm for what I should have too. I’ve tried it all and even too myself off opiates before there was a issue years ago and used tramadol since that’s “safer” we’ll its not I had seizures and lost my ability to drive for month!!! Constantly have upset stomach from over doses of Tylenol or Advil to just try to calm the pain temp. I fee like a lost cause or worthless many days more then not and so it’s nice to know I’m not all the way alone out here. Thanks for sharing your stories need more awareness for scoliosis!!!

  18. Well I found out the pain in my side is from my scoliosis everything getting smashed on the left side of my back. My doctor wants me to go to another doctor but I can not afford to go. This is a bad time of year my husband’s work has slowed down. So on top of headaches and neck pain my scoliosis is giving me fits. Sometimes the spasms in the left side are a little more than I can take but I do,

  19. Thank you so much you have put into words everything I am unable to express myself.
    At 70 gravity has certainly set in and the pain really does get worse so be prepared. I was supposed to be 5ft 10. So I am lucky my 110 degree is spread out. I have kept fit all these years but breathing problems because of the crush makes exercise difficult but I believe keeping the muscles in my back etc has helped tremendously. We are special people xxxxx

  20. Hi my name is Julie I to had my back done not once but twice 1st back in 84 .i had the Harrington Rod Technique done 35 years ago in Houston Texas. I was fused from 1T to L4 .Had a21 curverture it was fixed to a 14 .Don,t remember much about it except I had a cast on for 3 months then Go get it off got to take a hot shower then to have it put back on next day a new cast .On for another 3 months. several years later in my life I met a great man that in tern became my husband. 2016 I was having back issues again so I went to a back dr.and went through several test and they determined that I needed to get what is called a cage in the lower back.Had surgery done.I to have pins and needles on back down legs.Legs are still numb and some of back.I to go to gym to keep up so muscles don,t go weak.I am still weak.But doing ok.They did leave in the rods from 1st one.I do understand what you and everyone is going through it is real tough but you have to be a strong person when you go through it.

  21. Hello! I’m from Spain and I was told I had scoliosis when I was around 12, but they didn’t explain anything about it to me, they just said my spine was a bit curved in a S shape and that I must do certain exercises every day to control it. I grew tired of it and I didn’t even know why I was doing them, so I stopped and my family forgot all about it.
    Now I’m almost 19 and two years ago I noticed how I could see what it meant to have scoliosis: uneven ribs and shoulders, pain, not being comfortable when sitting in chairs,… I did my research and understood what it is and it was difficult. I hated my body so much (I have some more problems besides scoliosis) and I felt so ugly and weird.. but now I’m mostly okay, I’ve accepted it and I’m learning to deal with it and love myself. I’m starting to exercice to gain muscle and feel better, and I’m trying on different types of clothes to see how they fit that I’ve never had the guts to try before hahah.
    You’re really inspiring, and I could relate to everything you said here, I hope to be as strong as you someday. Let’s keep fighting and live each day to the fullest!!!

  22. Thank you for this post! I was born with scoliosis and it always feels like I’m alone in the pain I have to endure but hold a happy face and active lifestyle through the pain. It’s so hard not to just give up sometimes. While I never want anyone in the same boat I am in, I’m glad I’m not alone. I look forward to your future posts!

  23. Hello , hello from the other side of the world , am from Egypt
    I’ve been suffering for years now from alot of different symptoms but just discovered that it was all bec of my S scoliosis , i discovered that from a year but was greatly affected from it for around 5 years
    It mostly affect my breathing , left shoulder and legs
    Am still trying to understand it more and know how to deal with it , i use ur way of being super active always and try to forget about it
    U r totally right , its very hard and noone understands it , noone knows how deeply it affects everything and keep u in pain all the time
    Thank u for ur support ❤
    At least i felt like am not alone and am normal ,, i will keep searching and reading about it

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