This is my first post because I didn't know what else to do, so ill keep it short&sweet.
Im 18 and since I was 14 ive had chronic back pain, when I was 14 a doctor told me I would be in a wheelchair by the time I was 21 without diagnosing me with anything. For years I have battled for a diagnosis with the NHS and last week was diagnosed with Scoliosis. Im happy to be diagnosed but now im at a dead end. Im constantly in pain, for at-least one day a week I cant walk and maybe the worst of all I cant take part in any college activities like days out and group activities because either im not aloud for health and safety reasons or because im in too much pain. Ive become isolated and lonely and constantly in pain. The doctors give me co-codomol and it makes me feel drunk all day.
I need a back brace but I cant afford one, and I dont know if the NHS could get me one but I dont know what else to do.
I'd appreciate any reply's, thankyou
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chloeanne95
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Hi Chloe. Welcome to this site. You will find a lot of support and information about chronic pain here. So you now have a diagnosis, which is often useful. I'm not sure how severe the scoliosis is, its a condition which can be mild at one end of the scale and some may not even know they have it. Physio can help on some circumstances. You sound to be being treated "conservatively', is, with pain killers. The co-codamol might become more tolerable in time. The back brace should be on prescription; ask! Also, is there a treatment plan? Are you being referred to a specialist? Have you had xrays, a scan? A Pain Management Programme could help. Has surgery been suggested? Does a hot water bottle help? A TENS unit? These are all things which can help.
Hi chloe, Welcome to the site I am sorry you are suffering and at such a young age.Calceolaria has made some excellent points and suggestions of things that could help you.Do you have support from your family ? Maybe you could have a talk to someone at college such ad a councillor and tell them how isolatef and lonely you feel, There may be others in your college or place where you live who may be having similar problems and perhaps you could link up . Sometimes for example when I was in quite alot of pain and knew I couldn't sit through a whole evening out I would just go for part of it so if it wad a meal out I would join them for a drink for an hour so I didn't feel completely left out.Are there any activities you could take part in just for a short period of time on your better days? Is there anyone you can confide in about how lonely you are feeling as sometimes people are so busy getting on with their own lives they dont realise how you are feeling. Sometimes libraries have info on local groups whete you can meet people. Perhaps a different painkiller would help you without making you feel poorly.Even if you cant get out often is thete anyone you can chat to on the phone or email or text so you feel you have some contact.Coulf you invite college friends to your home occasionally so its not as hard for you ? Follow up on all the ideas Calceolaria has given you regarding your treatment , take someone to the doctors with you for support . Keep coming on the site and let us know how you are going on, sending you a hug..kim x
Chloeanne95 I really feel for you. The place that you find yourself in, the pain, drugs that make you ill, isolation is a very familiar story and probably something everyone on this site has been through. Who diagnosed scoliosis? Was it a specialist? Have you had MRI scans? If the answer to all of those is yes, then you must insist on your consultant referring you to a pain consultant. If you can get your pain under control, (& I'm really sorry to say that it's quite likely you'll always have pain, but a good pain consultant will help you find a way to live with it), then other things, like having a life, seem more achievable. You also need to learn about 'pacing', which is, when possible, spending time resting before a trip out and learning how to manage your activities so you don't do too much all on the same day. I wish you all the luck in the world darling. It's so unfair that you are suffering at such a young age. I estimate it takes about two years until you get yourself sorted following such a life changing diagnosis. But don't give up and how fabulous are you sticking it out at college when you're in so much pain. That's a remarkable achievement. You will find out who your real friends are now. That can be hard, my circle of friends of over 10 years couldn't drop me fast enough when I was no longer able to "run with the herd" as it were. But the friends I have now are wonderful, way better than the stupid, selfish women I was friendly with. Good luck honey, you'll be fine, it may just take a while!
Welcome to the site. My pain started at 16 and I'm now 41 and still in pain! You've had great advice already, the only thing I'd add is research your condition so you become the expert and then you can tell your GP what you need. Ask for physio, spinal surgeon and pain clinic referral. Also find out who the best surgeon is for your area and see that person x
"Rarely, scoliosis is caused by spinal lesion or tumor. Patients who are usually younger (age 8 to 11) than typical scoliosis patients will experience symptoms such as pain, numbness and a left-curving thoracic spine (levoscoliosis). A physician who sees any or a combination of these symptoms will order additional diagnostic tests, such as an MRI, to rule out the possibility of spinal tumor or other lesions as a cause of scoliosis"
My curve is on the left and my pain started at 13/14.
I havent had a MRI but after reading this I am going to tell them I want one
So sorry to hear about your pain and isolation - I know what that's like - I was homebound for around 2 years before i started getting slowly better. I actually have a chairback brace that I had after my fusion that I don't need anymore, if you happen to be in London? It's a size medium, though not sure if that is the type you need.
Definitely demand to be referred to a consultant (both pain and also spinal surgeon who specialises in scoliosis). Try to find things you enjoy doing that don't aggravate your pain and learn about pacing.
So very sorry sweetheart!!! Have you been to a pain clinic? They maybe able to help you more than a doctor. I pray you get some relief soon. You are so young to have such health issues. xxx Mitzi
Hi There, have they told you what your angles are, as far as your curves? I had scoliosis and at 19, while in college, had the surgery...rods inserted in my back. I had it done in June and literally went back to college in September. It is now 32 years later...and they're still intact and all good. I have been very active throughout my life...done kickboxing, skiing, golf, aerobics, yoga. Now, my spine does not bend, so no back arches, but who needs a back arch?? I had a 60 degree curve on top and a 45 degree curve on the bottom...so surgery was necessary. Good luck. Oh, by the way, I was not having pain yet. I only had some numbness down my arms.
I am not making recommendations as I do not know the place. However it has had interesting reviews. You need to have a look at the NICE guidelines and discuss them with your GP.
Hope this helps
Hello
You need to discuss the brace with your GP and Specialist, possibly, I may suggest that your spine is still forming and possibly this may be the reason that this type of support may be to heroic and they are waiting for the spine to become more formed.
For you I would recommend that you discuss any alternative treatments, sometimes if they restrict the spine to early problems could follow, also I do not know the thoughts of your medical team.
The back brace itself will be issued on the NHS although I feel with you being so young a physio may be able to give manipulation and exercise that may help you.
I can understand why stronger medications are not being prescribed and a possible pain clinic may help with ortho treatments and Tens The Tens could be a help used as an EMS. . There are other ways of dealing with this and possibly that is what has been decided in this case, your spine will develop and become stable at about 26 years old and the young within this period seem to develop problems as they grow up with bad backs.
Ask your GP to refer you to a spinal surgeon to get a full assessment of what your spine is like and whether you would benefit from having it surgical straightened or pinned. You could also ask to be referred to a physiotherapist, and then could ask them about the back brace. If they think it will be useful you should get it on the NHS, but bear in mind that they don't usually like folk wearing braces long term as it will likely weaken your muscles and cause more problems.
They said it was a slight curve, but didnt tell me a degree, all they did was call me and said its to the left and then left it as that. Dont understand why Im in pain 24/7
Feeling pretty down today, lost all of my friends because i dont go out due to pain and making me a little depressed.
I dont think i need a op, but its the pain i cant handle anymore
Hi Chloe, you have been incredibly brave so far in actively seeking out treatment for this problem. Do you have someone close that can help you push through daft GPs to get the help you need? Have you tried to google scoliosis? I have read and heard about a method that helps with some scoliosis with very specific exercises. It is called the Schroth method. This is a link to one clinic that offers this kind of help: scoliosisinlondon.co.uk
There may be others about. Try not to despair but you will need to remain brave and hopefully have someone close to support you to find expert treatment. At your age pain killers are not the solution in my opinion! Bug hugs to you and let us know how you get on. You will find lots of support on this website.
So very sorry to hear that you are suffering at such a young age. I learned long ago, if you can't get help from a doctor, move on and find one who will. It's hard, but you have no choice. Can you go to one of the teaching hospitals that deal with your specific problem? In the US we have many but I'm not sure how it works in the UK. Good Luck sweetie. I will be praying for you.
I was told I’d be in a wheelchair before adulthood and I’m still walking at 45. My pain however has got much worse in recent yrs but I am only very recently entertaining the idea of a mobility scooter rather than a chair.
If you are a UK NHS patient back braces are free but the consultants have to decide if you need one.
Do you see a scoliosis specialist? Not an General Orthopaedic Consultant but a spinal deformities one?
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