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Sep 27, 2014 11:47 PM

I was diagnosed at age 14 with moderate scoliosis. I have a 30-degree curve. I am now almost 21. I have always had a lot of pain, but I got/get by with regular pain meds. The trouble is, of all the doctors I have seen since the diagnosis (5 or 6), none of them actually know very much of anything about scoliosis, except that it is a back condition. Time after time, I have been told that scoliosis shouldn't cause me any real pain for the most part, then I was given a print-out of stretches to do along with well wishes for a full recovery. A couple of the doctors were "known for being good with treating scoliosis", but they really didn't know much either. The first one did an x-Ray, and told me that I would just need to keep exercising and it might get a bit better over time. The second one did an x-Ray, then she said "Well, assuming that I added up the numbers on the x-Ray like the book says to, then it looks like your curve really hasn't progressed much more." Then she offered to prescribe extra-strength Ibuprofen, as well as give me a print-out of stretches to do. That was last year. Neither of them showed my x-rays to me either. A few weeks ago, I finally went to a chiropractor, thinking he could really help me. while in his office, he had me walk up and down the hallway a few times. Then he said he thought my right leg was a half inch shorter than my left leg. He even acted as if I didn't actually have scoliosis, that it was just my leg length difference that was causing my pain. He even knew that I had x-Rays somewhere that prove I have scoliosis. So he gave me a shoe insert and said that it should help solve my problems. It did help some, but not a whole lot. That's the thing about scoliosis though, my hips are uneven, which gives the illusion of having one leg longer than the other. And despite what they have all said, I feel worse than ever now. I keep having more and more trouble. Getting up, getting active, walking; a lot of things. I never know from one day to the next whether I will even feel up to doing anything. But I can't just take a sick day. I have several obligations, including school, that I can't get out of. I have also had a lot of trouble sleeping lately. I have probably gotten 20-25 hours of sleep total in the last week. I'm looking at getting a mattress topper, but I don't really have the money for one right now. My family doesn't understand what I'm going through, they treat me like I'm lazy and that I do nothing but sit around all the time. I try to stay active, I do, but it's hard. They say things like "If you got a job and started working all the time, you would feel better." Some of them even tease me about it at times. It's almost like I'm not allowed to feel pain, or if I am, it's only for a little while. Yes, my family is good to make sure I'm okay, but I feel like they don't even try to understand. I'm sorry to go on and on, I'm just tired of feeling defeated all the time. I guess what I'm getting at is, should I find another doctor? Like an actual back doctor who KNOWS what they are doing when it comes to scoliosis? Would it be worth getting a new opinion on the matter? Any and all advice is appreciated greatly!

Sep 28, 2014 3:02 AM

It could be more the just the scoliosis. I would find a new Dr. I know it's hard to get them to lisson but you need to get to the source of the pain. Have you gone to a rheumatologist Or someone els that knows about the back. I have sleight scoliosis but I also have hypermobilty syndrome witch is the source of my pain. My joints go further then they are supposed to. Very painful. Its taken me 10 years to get this far. Good luck on your search I hope you find one that will lisson.

Sep 28, 2014 7:18 AM

Hello Hollybelle, my friends often call me suzibelle so I feel a connection, even if it is superficial. although I don't know much about scoliosis, I have been reading about it because of you. you are much too young to be suffering in pain. have you been to a spine center? there seems to be many across the country. how about a physiatrist? they specialize in physical medicine and rehabilitation (PMR) and can provide direction for your recovery including referrals to specialists such as a neuro surgeon.

Sep 28, 2014 2:11 PM

I have not been to a rheumatologist or any of those other doctors. I've been looking at trying one out, or going to a spine center somewhere. I have thought about the possibility of there being something other than the scoliosis itself. I know scoliosis has many unpredictable effects on the body, but it still seems like it's too much for just the scoliosis alone. I plan on talking to my parents about finding a new doctor soon. I really appreciate your help, and I wish you both good luck and good health in life! p.s.- I think it's really cool that your friends call you Suzibelle!

Sep 29, 2014 8:46 AM

my thoughts and prayers are with you Hollybelle.

Aug 24, 2017 1:50 AM

Just checking, did you get help ? I hope you are doing fine ? I am exactly in your situation . Feels like no one understand the pain.

Aug 24, 2017 10:41 AM

I've had scoliosis since I was in 9th grade. I've gone to a chiropractor since I was in my 20's. I always thought my back pain was from the scoliosis but it ended up that I have fibromyalgia too. They also told me that the scoliosis shouldn't cause me that much pain but that's all I could think of I'm my non-medical mind. Finally at 40 years old I found out I have fibro. It might be worth seeing a rheumatologist. With the sleep disturbances and pain it sounds like fibro too but it would be worth getting checked out. 👍

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