Living with Scoliosis

OK, so to start off, I am currently 25 years old. I have had scoliosis since before I was 16. Not born with it, but have had it quite a long time. I'm not sure what will help me, seeing as which I have tried therapy as well as pain meds. Neither work. I am not, I repeat not, having surgery. Way too much risk involved. I had therapy for about 6-8 months and it did nothing. Pain pills tend to put me to sleep and that's it. I know that swimming helps, but I don't have access to a pool :(. If I did, I would be swimming ALL the time! I love swimming! I am currently unemployed, so its not like I can just buy a pool or vacation just to swim. How do you all deal with it? Is there anything in particular that you do to ease the pain? I can't sit or stand for too long.

18 Replies

  • I have a lot of health conditions - cervical Spondylosis and ankolysing Spondylosis and the same conditions in t1 and t2 of the spine with nerve compression of the hips, narrowing of the spinal canal and fibromyalgia. I too can't work and I find friends don't understand and you tend to lose them as you never know how you will feel next day. I tend to sleep sometimes over 24 hours hence I miss out painkillers which my body doesn't seem to miss. All I can suggest is rest. Also ask your GP to refer you to a swimming pool if u enjoy swimming. Also ask if there is a hydro pool where you are. They should have one at the hospital as part of therapy. I can give you my phone number so u have someone who understands and won't walk away like friends do that either can't be bothered with our illnesses, don't want to understand and see us as burdens and sometimes you feel alone when no one is there. I don't know where you're from but I'm in salisbury and drive so we can even meet up at some point so we can support each other and I expect you feel alone at times. But your GP should refer you to the OT and pain clinic (which I think is crap) but everyone to their own. Sandy

  • Thanks for the reply. I was wondering how many others were going through the same thing. I am 25 and since I don't ha r any work history, I was told that I can't get any monetary help. I recently quit my job due to pain, so I have no income. Im thinking of reapplying (perhaps I'll get it this time?). I have lower, as well as upper back (shoulder/shoulder blade area), and it does get quite painful. I will definitely ask my GP if there are any hydrotherapy places near me or any she can recommend. My mom used to have hydrotherapy (arthritis in her back). I love swimming, so that should work out. I just wouldn't be able to swim in cold or cool water :(. I also have anemia and sickle cell trait. So, I unfortunately have to be extra careful with cold. I live in Chicago, so...its hard to avoid it unfortunately lol but heated pools would definitely work though. Again, thank you for your reply and help :)

  • Hi erica14,

    I am a middle aged man and have degenerative scoliosis. It was first observed when I was 11 years old at the standard school medical.

    After living a very active life and had a serious road traffic accident in 2001, I find I have now got osteo-arthritis all through my spine and body generally.

    It is very much the same for me with constant and variable pain between moderate and chronic. But I have other pain issues as well.

    Same as you I can't stand or sit down or lie down to sleep for very long, I have to keep moving. Even the comfiest chair will only last a while.

    Despite having constant spinal pain from the day of my accident it took 3 years of fighting with my GP practise to obtain a referall for a spinal specialist diagnosis.

    It was a hard struggle to obtain a referral.

    I saw a spinal surgeon at the Oxford NHS Nuffield. He is one of the main scoliosis consultants in the UK.

    I am afraid the outlook is not great for anyone with degenerative scoliosis and I am just being honest because I don't see any point in not doing so.

    I suggest contacting these people. This is THE main scoliosis support group otherwise known a SAUK.

    I have several effective ways of combatting spinal pain.

    I have lived with constant severe to chronic pain for 14 years now and I still self manage my pain and treatment.

    So please talk to me and I will share them with you and share my limited knowledge of scoliosis.

    My lumbar spine is now 29 degrees anti-clockwise off the vertical. Its very visible through my clothing even wearing thick hoodies or sweatshirts.

    But yeah have a chat ?

  • This is the NHS section for scoliosis:

    ............. and I've just seen you are in Chicago, I'm sorry.

    But the UK information equally applies.

  • We have several spinal specialist and chiropractors. I used to go to one (she was a chiropractor/ physical thearapist). I will be asking my PCD for a recommendation during my next visit. It seems that the UK has more information on most medical matters that pertain to me specifically than the US does. With sickle Cell Trait, they have more information, scoliosis, etc,. I have tried swimming in the past (it definitely works if it's warm :D ). It's great to have a community that's available to talk to. I try stretching occasionally, but it doesn't always help :(. I'll see what my PCD or hopefully chiropractor says. BTW, I'm 25 and was diagnosed at the age of 13 or 15. I had considered wearing a brace, but I hear/read that they are a bit uncomfortable. I will definitely let you all know how the visit goes :). I hope you all have a good day :)

  • Oh Wow ! Yes I share a lot of what you are talking about !

    HEAT is the main relief I obtain although its only temporary relief its worth it.

    Needless to say the British winter is a pretty miserable time for my conditions.

    My methods or treatment might not help you and I am sure you will appreciate these things don't work for everyone. I've had accupuncture for over all pain but no help sadly. Too much pain for too long : damaged nerve/pain receptors.

    My regular pain relief in no particualr order:

    Microwave heatpacks. Cloth bags containing cereal grains and some fragrances.

    After about 3 minutes they have enough heat to apply to any area of pain and it does work for me !!!!! Only temporary relief but boy its worth it. Can reuse/reapply again and again. As long as you don't burn the grain through over use (easy done). So I have several and rotate the use.

    Now this one is controversial for many reasons but I'm an older guy and a biker so I'm used to the sun/weather. I use sunbeds fairly often but not too much.

    The intense heat of 6 or 9 minutes stood in a "tank" ohh !! Its brilliant, but goes within an hour. Temp pain relief and fluidity. But also feelgood factor and we all need that. SAD syndrome etc. or just feeling down with pain. I find sunbeds help me a lot emotionally and physically.

    Stretching is very good. I did Wado-ryu in three seperate classes a week when I was in my 20s and know the benefit of stretches and even remember most of them.

    But how they quite work when your spine is off somewhere else I'm not 100% sure?

    Arms, shoulders, legs and neck stretches and rotation is what I do but not often enough. I tend to do this when things really hurt or when I get out of bed in high pain with stiffness.

    But I can see how a hot pool, would be really helpful.

    The greatest progress I made in 7 years of weekly physio after the smash, was initially when I had pool physiotherapy but this only lasted 6 weeks. I know that if they had continued I would have made some recovery much more quickly.

    After nearly 6 years on elbow crutches my body was misshappen and had forgotten how to walk unaided. So yeah I know a bit.

    To follow, ultrasound therapy..........

  • Another help is wearing bodyshapers.

    Yes we've all seen TV shopping and they are available for men and women.

    I wear two body vests ontop of each other to help support my spine.

    They help with day to day activities.

  • I have considered acupuncture :) haven't tried it as of yet. My fiancé mother wears a back brace at times, but I'm not sure if it helps much. So far the only thing that has helped is swimming. Pain pills don't work either. They just put me to sleep; which I suppose could be good. If I'm asleep, I can't feel the pain, right? I'm thinking if trying perhaps heating pad again. I tried them before I was diagnosed and a few times after, not much change. It sucks not having anything definite that helps. I previously had therapy, and my spine was adjusted each session (just typical back cracks, kinda of odd feeling actually) and massages. The massage works temporarily (maybe a few days), but it feels AMAZING!

  • Also, I twisted my ankle badly about 9-11 years ago and was on crutches for a week or two. I hated it. It did not help for my back! So, I'm extremely careful not to get any back injuries or anything ha-ha. Just in case.

  • Maybe some very gentle yoga. I had back surgery in 2007 for stenosis when I was 62. I have several problems with my spine but started teaching yoga 4 years ago - and have two classes a week. I even surprised myself and wish I had known years ago that I had this ability :-) I live in Crete.

    I too love massage and acupuncture - every little helps !

  • My aunt previously lived in Crete :) ; she moved to Hawaii. Kind if far from Crete, but OK. I tried yoga before I was diagnosed with Scoliosis, just to try it out. I should have stayed with it. It definitely helps to stretch (gently) muscles and relax. I will look into it more and try it out again. Thank you :) Have an awesome day :)

  • Pain is just about managing it or dealing with it by whatever makes you feel more comfortable. Pain meds are only one small part of the management. Ive been on Co-codamol 30/500mg strength for maybe 13 years and I seem to get on ok with them. But taking a higher dosage adds to my problems with confusion and cognitive ability combined with my brain injury. Confusion is a side effect of Co-codamol.

    I am not a typical "meds" person, I'd rather not take any but can't manage without any. There are days when my head isn't working too good and I'm in chronic pain and then I just sit in a corner and shut my eyes trying to shut the pain out. Not much you can do.

    I think its best to develop all round methods which you can vary to suit. This is OK if you are motivated to do it and motivation is an issue after years of chronic pain. Although I have always had a strong mind, I find some days I just can't do anything.

    14 years is a long time to survive and I've had one or two more near misses along the way. But I am not a quitter and that is an important mindest to have.

    I went for an ultra-sound session on my lumbar spine and top of my pelvis last week.

    I find it gives significant pain relief but it is only temporary and lasts maybe a few hours and then a gradual return to usual high pain over 10 days to two weeks. Some people mihght think whats the point? but anyone with longterm pain will understand that brief reduction of pain is worth every penny ! Just for a couple of hours.

  • I saw the spinal consultant late last year and he is of the opinion that the way in which my spine has deteriorated in the previous 12 months, he thinks I will struggle to walk 12 feet in ten years time. Thats not great news tbh, but I am not an ordinary person and have achieved some pretty amazing things. My lumbar spine is 29 degrees angle away from the vertical. But I have pelvic tilt and pelvic twist too. Its kinda messy !

  • I don't remember my exact angle of my spine.

    I have unfortunately been putting off seeing a chiropractor. Thy tend to want to resort to surgery :(. So, I need to go in January. I neglected to mention that I was diagnosed, when I was 15 or 16 as having Scoliosis. Not just randomly had it then. Normally Scoliosis is from back injury or birth, so its possible I was born with it, but it never showed itself until my teen years. It sucks :(. But what can you do right? I'm not big on taking meds if I can help it. I try to sleep it away (thinking if I am asleep, I can't feel the pain), which I have a bit if insomnia, so it doesn't work too often.

    On another note, I've had Vitamin D deficiency for over 6 months now. And well, I dont always remember to take my vit D. I've been taking it once a week for about 5-7 months now I think. I sort of forgot how long it's been...I'm going to see my doctor soon and see if they have risen a smidge at least. So many medical appointments I need to make in the new year...

  • How much VitD are you taking ? You need a good amount if you are deficient. Docs inclined to prescribe too little. When taking VitD - the uptake of calcium in the gut is improved and you need to ensure that the calcium goes to the bones and teeth. So take VitK2 with the VitD. VitD is fat soluble so needs to be taken with good fats or with your main meal. You may wish to research magnesium which is also crucial in maintaining healthy bones.

  • I take 50,000 UD ( I think it is, not near the bottle). And I will definitely look into the other vitamins. I wasn't told that I would need to take anything with it. I looked up some things about it and the information also said I should be taking them as well. The things doctors don't tell you...thank you so much for the information. I didn't know about the magnesium :)

  • I think for chronic conditions that GP's can be at a loss as they do not have the time to search for the ROOT cause of so many conditions....

    Scroll down for the video in the above link and have a listen to Dr Chatterjee of The Doctor in the House - recent TV programmes.

    He also has a website.

  • Thank you so much for this :)

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