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.
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
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
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 🙂 I’ve also made a YouTube video about how scoliosis affects my everyday life. Please give it a watch, like and share!
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Louise X
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I had scoliosis surgery in 2010 and blog about my experiences living with scoliosis. My aim is to raise awareness of scoliosis and help and inspire others with the condition.
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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
Hi Linda,
Thanks for your kind comments. I’m glad you enjoyed reading my blog, it means a lot to me that people read it and find it helpful 🙂
Louise xx
“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.
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 🙂
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.
Thank you Sharon, your comments mean a lot to me. Anytime you want to talk feel free to email me.
Louise X
I have congenital scoliosis in the lumbar region and my vertebrae were essentially fused together in that area since birth. It is nice to read other’s stories. I never had surgery and lost 4” in my torso. I am 59 and have led a pretty normal life. I wore a back brace from 2-6 grade. I am now at a point where I am starting to have more back pain and need to get on an exercise routine. I have never had any numbness. I do get neck/headaches from my condition. Has anyone out there gotten any relief by hanging from a bar to stretch?
my daughter is 3 yrs old and was born with congenital scoliosis, congenital heart disease and a displaced kidney. She had surgery at 14 months for a tethered spinal cord. She now wears a brace pretty much 24’7. Curve is at 52 degrees. She complains of pain in her right leg, all the time. Docs say there is no reason for it that they can see. Wish I could do more for her. She gets PT 3x/week and speech therapy because she has some speech issues due to nerve damage from Bell’s Palsy. Any advice? Surgery seems imminent.
Hi! I’m 65 years old and was diagnosed with scoliosis at age 14. I never had surgery but wore a brace for four years while in high school which was awful. All the correction I got from wearing the brace is gone. My curvature is back at 52. I am uncomfortable and have pain pretty much all the time. It’s exhausting. I am sorry for all of us who are suffering with this condition.
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!!
Thanks Lorraine 🙂 xx
I so get where you are coming from!
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)
Kisses,
Annie.
Thanks Annie, that’s so kind. Comments like this are so important to me and really make me determined to keep posting on my blog. Thanks again! 🙂
Louise
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.
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
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.
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
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.
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!
Hi Stephanie I am 40 and just had spinal fusion to correct my scoliosis. You should see a spinal surgeon and get some recommendations to see how your scoliosis should be managed. Having surgery was the best thing I ever did for health and i feel so much better for it. I’m only 7 weeks post op but I feel so much more comfortable in my body. I still have pain but it’s early days and the pain is less then before surgery. Good luck with your scoliosis journey i hope you reach out and seek options. Take your power back and control what happens to you and your body x
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.
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
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.
Great attitude Leslie 🙂 thanks for taking the time to post a comment, I really appreciate it. It’s good to hear from others in the same boat.
Louise x
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
Thank you for your comment Sara – I’m really glad your chiropractor is helping you 🙂
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
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,
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.
Just found this blog and I already love it!!!
I was diagnosed five years ago when I was eleven.
Thank you Juliana 🙂 I’m glad you like my blog x
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.
Hi Em,
Thanks so much <3 I'm glad you have enjoyed my blog. It makes it worthwhile when I receive nice comments like yours.
Take care and if you ever need a chat, let me know
Louise x
I’ve had scoliosis my entire life, I’ve also had to wear a brace when I was younger and had to have 2 long surgeries. I’m only 23 and I’m always in pain in some sorta way or form, I just live day by day and hope one day the pain will subside into nothing
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
Thank you Sherry – you are definitely not alone. If you ever need a chat let me know. I’m glad my blog has helped you in some way.
Take care,
Louise x
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!
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!!!
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,
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
Ah thanks Christine <3 xxx
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.
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!!!
Aww this means a lot to me, thanks Cristina xx
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!
Thanks so much Jessi xx
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
Hey Louise,
I myself have had two spinal fusion surgeries when I was 12 & 14. I have a rare form of scoliosis that grew with in two years to two 75 degree curves in my spine. I was able to correct some of it, resulting in growing four inches in one day and then loosing 75 % of my flexibility. I had to have a second fusion because my spine curved 13 degrees afterwards and broke the lowest fusion. I’m now about to turn 21 and can’t believe i’m approaching my ninth year of dealing with this all.
Your post resonated with me so much, especially right now when living in Wisconsin and the weather being crazy everywhere. It means a lot to me that there are others struggling with the same pain as me. Not everyone really understands that there is a lot of other pain that comes with the chronic physical pain.
Honestly the hardest part for me sometimes is the balance of it all. It takes so much energy to make it through the pain that I sleep more than the average person. Plus being a college student and with work makes it very difficult to have time to make the preventative lifestyle changes I so desperately want to.
Thank you for posting!
Hi, my name is Cumorah (pronounced exactly how it is spelled) I have scoliosis, an S curve and am only 16 but found out I had scoliosis at about 13-14. I have pain in my back and breathing problems, but only because I heeded the orthopedics advice and wore a brace that was supposed to prevent the scoliosis from progressing anymore. While it may have helped that it made the pain in my back to appear in the first place. I also never had trouble breathing before I wore that brace. To me the pain for me feels like there has been a sharp knife sliced down on both sides of my spine and that the wound won’t close and it feels like the knife is repeatedly being poked with the knife. That personally is my pain that I feel, but I won’t try and get surgery. I may not be able to do exercise at the moment due to my breathing problems, but I can wait. I have been researching ways to fix my back with limited pain, and without surgery. I found something that can help. This website I found can help people who have scoliosis even if they are around 60 years old. I know they can’t help people who already have had surgery but if you had researched alternate ways you might have preferred this way instead. These people help you by re-doing your muscle memory so that your spine is fixed naturally instead of force and without pain or with the least amount of pain possible. Scoliosis is a genetic disorder so I am gonna put in the website I am talking about in case you have kids in the future and want to prevent this problem for them. I am not quite sure how to put a link in so I am just gonna put in the website here: https://www.treatingscoliosis.com/
I really think you should look into this, and I am not only talking about who wrote this article I am talking about anyone who reads this. PLEASE I AM BEGGING YOU TO LOOK INTO OTHER OPTIONS BESIDES BRACING AND SURGERY.
You have no idea how much reading this makes me feel like I’m not such a “medical weirdo”. Everything you describe going through daily is exactly what I go through. I found out I had scoliosis 9 years ago (45% curve then) and fusion was 4 years ago (60% curve along with a twist within the curve so that my ribcage was twisting into my lungs). I just recently figured out how to trim my toenails easiest (sitting on steps) and still can’t put a pair of tights on in less than 10 minutes and easily get winded because of the effects it had on my breathing. One of my shoulder blades protrudes all the time and makes it so difficult to sit in chairs which my Dr just says to carry a lumbar pillow for……becaise THAT doesn’t draw more attention to you. There are so many people who don’t understand that I don’t have full range of motion in my back….or even what full range means. When I explained to someone I had to relearn how to put on pants and how to even go to the bathroom by myself they were so surprised and confused “but it was just back surgery”. Thank you for posting and making me remember I’m not the only one who feels this way!
Hi there!
I am 21, I got diagnosed with scoliosis when I was 2, I’ve gone through 5 surgeries that have not corrected it, as I have a severe case, 81 degrees. Your post related me to so much!! I never thought anybody experienced this pain both physically and emotionally either, but reading the comments made it more clear! Thank you for writing this, I’m glad that your surgery corrected it a little for you.
I am 63 years old. As a teen, I was told to stand up, etc. for the most part I did and no one noticed at had scoliosis, even when my mother had to practically remake the bodice of my first formal do that it would fit my strange build. I was not until I was in labor at age 22 that a nurse noticed my condition while I was bent over and the doctor was struggling to inserting the needle to administer a spinal block. It took 13 attempts, I counted. I have had problems off and on and used to get relief from a chiropractor. For the most part I lived a normal life. Orthopedic surgeons described a long involved surgery with many risks of complications. None recommended I have it. I could work hard in the house or in the yard without consequence. As I have aged all that has changed. I had to have a total hip replacement at age 50 and the second hip replaced at 60. I now have daily chronic pain. I have a double 50 degree S curve with plenty of rotatotion. I feel like I have no torso. It is difficult to find clothing. I daily pain on one side and I have many knots, trigger points. I have been through aqua therapy and land therapy and dry needling. It did not help at all. I had to give up mopping, vacuuming get, raking and sweeping years ago. I have to take several breaks while cooking and other daily tasks. I know I could accomplish so much if I could just “get better”. I know that is not likely. I save the limited amount of pain pills I can get for social engagements, holidays and other events so that I can have a half way decent time. I try to get to the gym and do what I can. I just wish there were injections to kill the muscle plain. Pain management just referred me to my general doctor for pain medication. 40 pills for 90 days and you must go back to the doctor for a refill. I have been making them last longer. All the new rules in regulations are costing me more for unnecessary doctor appointments and now I am being told I will all be subjected to a random urine test once a year to make sure I am not taking other pain medications. Ridiculous! That is a result of the war on opioids. Well, wish I could write a more positive experience, but for now this is my reality. Take care. Denise
I love everything you said here especially with the emotional pain part and exercise. I don’t feel like I am such a crazy person. I am 25 years old and have congenital scoliosis. Doctors discovered it when I was 3 because of another rare syndrome that I have. I wore a back brace from age 10 through 15. I always figured that the emotional pain would go away when I stopped wearing a brace, but the emotions just change. It has completely weakened my self-esteem and I try to let it go but it’s hard when clothes don’t fit, can’t get comfortable, and just knowing you look different. I try to tell myself everything is fine, but it’s not that simple. Exercise is hard too. I get so winded when I run, which can become very frustrating. Thanks again for all the words. I really appreciate it.
Thank you for this blog. I have rib hump scoliosis and I can relate to much of what you said, especially the never being able to get comfortable. Being out of the alignment causes so much extra stress on your body. Not to mention it is hard to breathe when you bend forward with a rib hump.
Hey Louise!
I really enjoyed your blog post. My name is Cassandra and I’m 28 years old. I also live with scoliosis since I was 13/14. I had an S curve, 45 degree top and I forgot the bottom curve degree. Basically my lungs and rib cage were being pushed / crushed together, and it hurt so much to move at times. I finally had the surgery when I was about 17 in 2007. I had trouble laughing and breathing afterwards due to my lungs being placed into their correct position. I even went through depression because I couldn’t do anything after my surgery, I was stuck to a bed. It was definitely a long process I had to go through but I’m so happy I did. It’s truly relieving knowing that I’m not the only person who understands the feeling we go through everyday. Prior to surgery I was in constant pain, to a point where I couldn’t get out of bed some mornings. Thankfully after surgery it has gotten better but I do have my daily knots in my back that my muscles create when they constantly tug and pull with each other. Or the muscle spasms that i get from time to time. You are definitely spot on about the emotional pain we go through having to deal with the daily pain. It’s tough at times being the only one in your family or relationship that has constant chronic pain because it tends to feel like you’re just complaining so you try not to. I also have a hard time getting comfortable in bed, that is definitely the worst for me.
I’ve always loved to dance as a child to eventually joining a hip hop dance team in my early 20s, it definitely helped my exercise I needed but there were the obvious moves that I couldn’t do because of my back being held up by the bar in my back, it sucked but I got through it. I notice that if I exercise in the gym or go on a hike, later in the evening i suffer with pain. So I stopped working out for awhile and i gained weight. After gaining weight I noticed the pain came back even more. So it’s a constant battle with myself of being active, working out, and being healthy so I can reduce the pain I have. Sometimes I do wonder what will happen when I decide to have children, will I be able to have a normal delivery or need a C-section. The things we have to think about or deal with is so much better when you have others to talk about it with!
Thank you to everyone who wrote their comment, it’s so uplifting to know you are not alone!
Hi Cassandra,
Thank you so much for your comment. I sympathise with having pain after exercise, but like you say it’s a constant battle and we can’t win sometimes as we get pain either way! The hip hop dancing sounds amazing though 🙂 I’d love to try that.
Thanks again for reading my blog, I appreciate it 🙂
Louise x
Hey Louise,
I loved your blog!!
I am 14 years old and only found out i had scolioses a few months ago… it was and is really hard for me as you said more emotionally… but it does help me to talk to other people with these problems… and relating to a lot of this… I was in a clinic in Germany for it and now I have lot’s of friends that understand but they live a way away… I enjoyed reading your blog very much and thank you for sharing your story.
Ella
Thank you Ella <3 I’m glad you enjoyed my blog.
Hi , I really enjoyed the info , I am 69 yrs and had my surgery when I was 12. I had the Harrington Rods put in but had them taken out a few years later because it hurt my neck.
I too am very self conscious of the clothing styles that I wear .
Thanks for sharing
Thanks Kathy 🙂
Yes! It affects the whole body and is so hard to get comfortable.
This is an interesting blog. I am from Australia and was diagnosed with and S curve scoliosis when I was 17. A chiropractor discovered it when I saw him about a sore ankle I sprained playing netball. I am now 61 and I believe the curve between my shoulder blades is 47 degrees and lower back is 38 degrees. I was told I was too old for surgery when I was 17 but doctors said basically the curves balance out so I shouldn’t have many problems. After reading the many responses above, I think I am doing OK. I have to have remedial massage every month which helps with the stiffness and soreness. I understand a little about breathing. When the muscles tighten I feel it when I take deep breaths. I can relate to clothes not fitting correctly, bras are uncomfortable. Long necklaces always hang crooked. Vacuuming causes a very sore back. But beyond all of that, I feel like a hypochondriac because the pain is not always the same, and it moves!!! Because it is mostly discomfort I think is the best way to describe it, no one really understands.
So thank you for the opportunity to vent but also to read what some others are really going through. It puts everything into perspective for me.
I understand how you feel, except I haven’t had surgery. I try to stay active too, but sometimes it gets the best of me. I’m 26, I’ve had scoliosis since early adolescence. I have a right thoracic curve. It definitely causes psychological problems and depression that you have to push through, and resolve to not let it beat you. It is also very scary, as you may find yourself worrying about the future. It is equally scary thinking about surgery. I agree that being uncomfortable 90 percent of the time is extremely frustrating. Everything about this condition is very frustrating and confusing. The pain, nerve pain and numbness, clothes not fitting properly, not being able to keep up with other people, being uncomfortable standing, sitting or lying, and also the fact that most people do not understand. I am definitely no stranger to feeling judged. It is hard. For those of us with scoliosis we have to continually learn how to live with it, and make the best of our lives. I have found that yoga and staying active in general truly helps. We must accept ourselves as we are, and refuse to give in. I hope everyone living with this condition finds peace and understanding, and chooses to keep moving foward. Never give up!
Thank you Kimberley, it certainly helps to know that we are not alone. Thanks so much xx
I am 77 and have known that I have scoliosis since my youngest daughter was diagnosed when she was 7 years old.I have never suffered until about 5 years ago when suddenly I developed a hump on my right side.After xrays I was informed that I have an s bend and my lower vertebrae are fused .Within the last few weeks I have had stabbing pains where my bra fastens which has made wearing one impossible.Thank you for your blog,it has made me realise that I am not alone with this problem and also that my fear of needing a hip replacement may be sciatica instead.I sympathise with those who have suffered from an early age,unfortunately this is hereditary mine and my daughters came from my paternal Grandmother.I wonder if research will ever be able to eradicate this debilitating problem
Thanks Janette, you are definitely not alone in this x
Hello
I have a spine fusion too. I had surgery three years ago. Like you said, it is much better now but still..I can fell the pian. My back still hurts. It’s not something that goes away after the surgery. It’s just a different kind of pain. However, in last few months I’ve been feeling consistent pain in my back. I don’t let my condition beat me but sometimes I can’t just ignored it. My body tells me when I have to stop and lie down. It’s the only way I feel relieve.
Thank you for sharing your experiences. I don’t feel I’m alone and I know that there are other people that understand how I feel.
Thanks Belen, you are definitely not alone x
My experience with scoliosis was completely different. I had the surgery in 1975 with the old style Harrington rod. Maybe that was better….College, jobs,marriage, two kids born naturally except that they wouldn’t give me an epidural due to the scoliosis (I apparently cursed out the obgym for that) and I rarely had pain until I hit my 50s -something about scar tissue aging faster than other tissue. In any case, I never talked to others about it or complained. I tied to live as I would have without scoliosis . Attitude means everything! Thank you.
Thanks Catherine. I certainly agree that attitude is so important. Thanks for sharing your experiences. 🙂
Hi, I’m 16 years old and yesterday I got the results that I got scoliosis. It’s only 13,5° but it hurts so much (but also mentally) and I don’t know of it’s right because most of us have a degree between 20 and 50 or even more. My doctor said that the curvature can be worse in the next year(s) because I still grow. You’re blog is so beautiful!!
Ahh thank you <3 xx
Hello. I just found your blog. Thank you for writing so openly about your experiences. I have often felt alone and even isolated in my own. Its refreshing to hear someone else who relates. I was first diagnosed at 10 years old but at that time they thought I would just grow out of it. By the time I was half way through high school I had so many days of struggling to keep up with my peers and what seemed like failing joints with my shoulders, hips and especially in legs. Back in to orthopedics finally and the surgeon recommended nearly emergent surgery to be scheduled just a week out from our meeting. I never got to fully process what my body had been going through. Fast forward to my mid/late 20’s and I started experiencing more problems never thinking for once it could be the scoliosis again. It was. I went back in to adjust the first surgery. I came out of it much worse than anticipated but I have pushed through everyday thankful to be standing on my own. Its not everyday but there are days that I grieve for things that I know I can do but my body holds me back. On those days I remind myself that I am still standing on my own. The pain remind me I’m still alive and fighting but its exhausting.
Thank you again for your bravery and story.
Thank you so much Shelly <3 xx
I’ve been living with scoliosis since I was twelve years old, I’m 63 now. I can honestly say I don’t know what it’s like not to have back pain everyday. I had a mild curvature and it was decided physical therapy and observation would be enough. They now know that this doesn’t work and the curve always progresses. I wish my curvature had been corrected during my adolescence, maybe I wouldn’t be living with chronic pain now.
Hi I’m now 54 yrs old. I don’t know exactly when I first suffered with scoliosis, I’ve just always had back pain. I remember my mother saying that it was because of the way the doctor strapped my arm, which was broken during a difficult delivery, at birth. Then complicated when I fractured my leg at around 6 months old (a very large and active baby).
I have a vague memory of my mother taking me out of primary school for a doctor’s visit and her saying no to a back brace. She didn’t want me to be different from anyone else. Please remember that this was the early 70’s not now.
I can relate to everything that you said in this blog and wish that people could understand the reality of living your life in constant pain. Now I am suffering with problems with the upper thoracic curve which causes constant headaches.
No wonder that assured with depression as we get older
Hi Louise
How wonderful to come across your blog!! I received a correction Harrington rod at 13 and 45 years on have hardly ever spoken of my pain or challenges except a wonderful lady I met in my ophthalmologist rooms 2 weeks ago who encouraged me to search online.
So we grow and learn!!
Blessings to all carrying their hidden disability. Proud to be part of this team ♥️
Bent not Broken !! My new banner – blessed to have discovered it
I came across your page as I’ve been trying to lookup why after q6 years after I had surgery when I was q4 and now 31 I am leaning to my left and forward. I hate it and try to catch myself. My spine was an S, had 2 rids and 25 screws put in. I still have a hump on my right side. And I swear one of us needs to create a bra for us with scoliosis cause it’s frustrating! Your blog made me smile and gives me hope, I catch myself shutting down and sleeping because noone understands and tells me I’m “fixed”. God bless you.
Ahh thanks Felicia, I know what you mean about the bra situation – very frustrating!! Thanks so much for taking the time to comment.
Louise x
Has anyone else had issue with disability I live in the USA and im 35 I’ve had it since I was born with levo scoloisis my parents wouldn’t do surgery when I was born as it was to risky at about 33 after contracting covid I’ve gotten to the point I cannot take ot anymore started seeing a spinal specialist and they refused to do surgery and referred me to pain management however without wanting narcotics im left with limited help with daily pain and issues and limited mobility mom of 8 and 10 and 18 year old I feel so helpless I can’t do things they love because of the pain it’s so horrible because it’s not just physical it’s emotional mental as well