constant pain...

[wallflower123]

i am 17 and have had chronic lower back pain all day every day since may 2013 after a fall onto my back at cheerleading. its almost been 4years and i haven't found one consultant that i can trust, doesn't lie to me, understands me and my pain, or actually treats me like any other person in serious pain. i have been on and off many mediactions which have managed and helped at times until my drstops/cuts them then just leaves me struggling. 4 months ago my dr cut my dihydrocodine down and my amitryptiline. i really tried to carry on but getting into my wheelchair was hard let alone 5 days of college a week. he gave me a week to 'get used to it' until he decided to either stop or dramaticly cut down every one of my medications. its now been 3 and a half months of awful pain 24/7, in bed all the time, only getting into my wheelchair for meals and to get a drink. the only 'support' ive been given is once a week sessions with a mental health/support worker, who has stated that there is nothing she can do for me, i am clearly in a lot of pain, and the way ive been left isnt fair. the only thing she wants to do is talk to my dr about upping my meds but i feel like its a waste of time. the stress and frustration after putting up with being treating like this is after almost 4 years is becoming harder and harder. i just hope one day someone will understand and give me a voice and a life back since ive had nearly all my teenage years ruined. until then i really dont know what to do or who can help.

does anyone know of any pain advocates, support workers or nurses that can help with dealing with life with pain as i feel very stuck

[Blakejess]

First of all what test have u had done, to determine the cause of pain i.e. MRI, X-ray. If something is wrong and it's not been found then meds will not fix it, they only mask it. I suggest if u havnt had any of these above . U go to a good Gp push for this to be done. Or find about 2 grand to get u in the door with a neurosurgeon at a private hospital, pay for. MRI and get the results. Once you have the results, if there is something that needs further treatment s.Go bck see yr Gp explain what the crack is, explain I wish to continue see this consultant. But financially u can't afford to and ask the Gp to refer u back by the nhs. There has to be a 2 wk gap from when u last paid to go see him /her as to when him/ her will see u again, on the nhs. This is the experience I had . Except I only went as far as paying for my first consultation £250.00 before been referred back. Not sure what country u live in . But by law we have the right to be treated at a private hospital via the nhs . Good luck

[wallflower123 in reply to Blakejess]

i have had 2 mri's and xrays which they said showed L5 S1 prolapsed disk and they gave me naproxen, codine, and i saw a physio a few times. but over the years different dr's have said theres nothing and some have said its on the scan and that my symptoms clearly make sense with an injury to that area of the spine. i dont know what to believe or push for really, but everyone seems to expect me to have all of the answers. when i was under great ormand street hospital they said it all makes sense so their opinion is a bit more important to me but unfortunately they were only treating my kidneys and bladder so couldnt help much with my back and pain. im waiting to move areas in the next few weeks and im going to see how it goes with new drs and if it continues to go badly i will probably go private.

[Blakejess in reply to wallflower123]

You should be able to go private via nhs , may I ask is yr kidneys and bladder a separate issue. As I know all my problems with mine are down to the nerve s in my back affecting my bladder. Not emptying properly ect.

[wallflower123 in reply to Blakejess]

my bladder/kidney issues, right arm weakness, and curled/frozen right foot all started after my fall. the area they said i injured id the are that controls your bladder and legs (problems that i have) but one minute they say it makes sense and the next time it doesnt.

[Blakejess in reply to wallflower123]

Makes massive sense to me. I was on antibiotics for over a yr. saw many consultant s to do with my bladder and had many invasive unessecary tests. Once this issue with my back was found out and worked on . The consultant said it now all makes sense. So discharged me from urology.

[Grumpygrampa]

I am very sorry to hear your struggle only you alone know how bad the pain is,I have found over a lot years that it's hard getting doctors to understand how bad the pain is .I fell on my back at twenty and have been through umpteen doctors with no definite result,I refused going for mental health way as I new it was real .I hope you keep fighting to get believed and get help myself fell again and ended up with two fractures on my spine now because they can see something you feel your believed ,but something was causing the severe pain all the years before just because it wasn't that obvious it was very real.i hope you keep fighting your young,the last thing you want is to let it win keep trying to get a doctor to believe you because it is real you know that. Grumpygrampa

[wallflower123 in reply to Grumpygrampa]

im moving soon so will have new drs and if things dont work out with them i will be going private. im also going to apply to receive copy's of my scans and the reports that state the damage they told me was there in the first place so when i meet new people and explain myself, the pain, and my frustration i have something to prove what i mean

[birdkeith]

hi, i realy have evry sympathy for you, i know what you are going through,all i can say is mine is inoperble and its in my neck, as for medications i used to visit a pain specialist at hospital who after nerve injections and cannabis none of wich helped put me on these buyrans patches they went up to 15mg and then he discharged me but said if i ever needed to talk to him he would aways see me , ive put up with outright agony since and i got desperate last week and went to my doctor, she suggested i try codein and paracetamol at the same time as the patches, ive just had the first period of semi pain free days in a lot of years , i do get a bit of side effects but i put up with that, thats all i can tell you and maybe they wont put you on the same because of your age but it might be worth a try, wishing you all the luck in the world,

keithxx

[wallflower123 in reply to birdkeith]

ive tried cannabis with my medications before and it just intensified the sleepy feeling and made me not as tense. when i move im going to push for more help but when i normally do they think help means meds. im willing to try anything but i will look into the patches

[gindy]

I'm advise you as I have just advised the latest post on here. Pay to see a private pain doctor who will advise your gp on what to prescribe.

As pain doctors are more of a specialist in understanding pain most doctors will follow their instructions.

It only cost me £105 and I skipped an 18 month waiting list (yep, that's right...18 months!!). It was honestly the best thing I've ever done and can live life relatively pain free, mostly. As long as I understand my own limitations that is.

Good luck.

[wallflower123 in reply to gindy]

thank you

[Heather-Bee3 in reply to gindy]

Hi could I please ask you where you contacted a pain doctor I take lots of meds not working for me so I'd definitely pay out private so my gp could give me the right pain meds. Thankyou

[gindy in reply to Heather-Bee3]

There's a pain clinic local to where I live. If you Google pain clinics/ pain doctor local to where u are I'm sure you'll find one. If you're in Sussex or nearby I can recommend the one I saw. It's the montefiore and I think they have clinics elsewhere also themontefiorehospital.co.uk...

Best of luck, I really would recommend going private Heather-Bee3

[Heather-Bee3 in reply to gindy]

Thankyou I live in newcastle but I will look at what's local too me thanks for your quick reply.

[gindy in reply to Heather-Bee3]

No worries at all, happy to help.

Best wishes.

[adecyclist]

Aww jeez. I totally understand. I was the same. I used to go to see my GP every few days for six months trying to get the right medication, answers to why nothing was helping and sometimes just because I felt like nobody was listening. I also saw loads of hospital consultants. I wouldn't accept that there was no cure for the pain. Unfortunately in my case, a few years on, the pain is still there and the doctors have told me there is nothing they can do. My pain is caused by nerve damage in my back too. I know it is hard.

I also know it is hard to trust doctors, especially when you feel like they are lying to you. Sometimes they don't explain things properly and sometimes they don't tell you everything you want to know. The fact is sometimes they don't know the answer either. What is important is that you are honest with them. That in itself is tough. But without them knowing everything they can't help. I'm not just talking about telling them what hurts or doesn't work. Tell them how things are affecting your everyday life and how miserable you feel.

I hope things get better. We're here for you, even if you just need a good moan!

[johnsmith]

See an Alexander Teacher and McTimony chiropractor. They can investigate the pain caused by over contracted muscle. Both practitioners can help you develop strategies to deal with this problem.

[Seagull72]

22 years of varying levels of sciatica, I understand your pain.. 1 discectomy and lumber decompression Aug 94 L4/L5, still no issues with this one. 1 problematic discectomy and lumber decompression L5/S1 with CF leak in surgery in 2005...2nd revision discectomy at same level Oct 2015...so far so good. All surgery was for left side sciatica. Now I have severe pain on right side from hip down to lower leg to include numbness from knee to big toe, waiting for consultant appointment on Feb 8th... diclofenac antiflams and cocodomol. If you have a prolapsed disc why have you not had surgery to releave pressure on sciatic nerve?