Help!

[Leelee16661]

So I've written on here before regarding the pain the I suffer with and the medication etc that I take. If you haven't read any before then like me give you a quick run down, i am 24 and I have been suffering with chronic lower back pain and nerve pain down my right leg for about a year now. I have had all the tests under the sun which all come back as inconclusive. However the thoughts of numerous doctors have been interrupted nerve signals, inflamed nerves, something going on higher up in my back ( which they won't scan) or I did have a slipped disc but it healed itself leaving behind nerve damage ( they were very slow in offering me any form of scan). I take 600 mg of prebalin a day as well as tramadol when needed and 2 mg of diazepam at night. I find these all take the edge away from the pain but it still there.

The doctors it seems have more or less given up on me as they are no longer helpful and seem to just push prescriptions at me instead. I was referred to a physio who job is it to take a pain management approach with me. I walk with crutches because the pain is unbearable and hate them!! Anyway the physio has started me on a very gentle exercise plan with me walking ( with the crutches) for 10 mins a day, swimming pool when I can, exercise bike in the gym for 5 mins 3 times a week, gentle upper body weights and some exercises to do daily at home.

Now to come to why I am writing on here for the past few days I have been getting the same pain as usual in addition to a similar pain down my left leg. This has never happened before and i just wish all this pain would stop because it's ruining my life! I am concern with this new pain though and don't know why this has started all of a sudden.

The spark has gone out of me, am constantly exhausted due to lack of sleep and emotionally drained from it all. It feels like I have put my life on hold hoping that things would get better but things remain the same as they were almost a year ago. I hate feeling so helpless and down about all of this but everything is takin its toll. My support network isn't great either as most of my family just ignore this as the kind of elephant in the room and just think I should get on with it ( if only they knew!..).

Anyway sorry to write an essay, my main point was this new pain and what you think I should do.

Thanks once again for your support

L x

[Steve49]

Hi. Blimy you are having it tough!!! I can sympathise with you!!! I have had Chronic Pain (Neuropathic) since 2005 all the way down my rightside 24/7.

I have been on Pregabaline 600mg/Oxcarbazepine 300mg/Amitriptyline 150mg/ Amantadine/BruTans 20mg.

Unfortunately these like yours only take the edge off the Pain. I currently have no life (house/bed bound)

Steve.

[Leelee16661 in reply to Steve49]

Wow you sound like your going through it aswell. Hope you get some relief. Take care Lx

[Steve49 in reply to Leelee16661]

Hi. Yes things are tough but I am not going away!! How are things with you today??

Steve.

[Steve49 in reply to Leelee16661]

Hi. Yes things are/have been tough to date. But I'm not going away !!! How are things with you ??

Steve.

[Hidden]

Hi u should go back to GP and get them to refer u back to the pain specialist it sounds like u may have a trapped nerv, also the pain specialist can give u better meds to help with the pain and also get them to send u for a CT scan

[Essie49 in reply to Hidden]

I'm sorry you are having such a bad time. I can only say that if I was in your situation I would try and get a second opinion. There is a point with the pain clinic where they do all they can and then it is just medication. I have done 2 years and been through everything they can offer. I have had to build my life around it. I have to use a wheelchair for any distance. Pain and depression go hand in hand. I hope you get some

peace of mind.

[SteveHartnett in reply to Essie49]

Hi Thanks, to date I have been to every hospital in Birmingham well it feels like that with no help to date. I have also been to a hospital in Oxford (twice) but still no funding. I'm currently at a hospital in Liverpool but still no funding (twice) again !!!! I'm running out off hospitals now !!!!!!!

Thanks

Steve.

[SteveHartnett in reply to Hidden]

Hi, yes I have been back to the pain clinic in Birmingham who sent me to Oxford. The NHS wouldn't fund my treatment required (twice) I'm now in Liverpool (Pain Clinic) but I still can have funding through the NHS (Great) I had a MRI Scan there last year & Phycology Testing but still no Funding from the NHS !!!!!!!!

Thanks

Steve.

[Leelee16661 in reply to Hidden]

Yeah i am on a waiting list to see the pain management consultant although as I live on the Isle of Man there's a 4 year wait!! Trying to get referred to England at the moment. Fingers crossed! L x

[anna79]

Omg Lee Lee u have just described me down to a t. I'm 36 and exactly the same as u only my doctors have threw that many tablets at me I'm now on 8 different tablets 4 times a day. I write here a few weeks ago abt changing my gp and I got a lot of advicem so I went to gp as like u the pain is going down.my right leg now and the tablets I'm taking are not doing anything anymore I'm in pain constantly. Anyway when I went to.gp explained all this. He then said u can't keep.coming for meds I tried to tell him abt this new pain and he said that my pain is coming from my mental state as I was darted on anti depressants a few months ago bcos I has a seizure a few months ago I'm not allowed to drive we live in the country I couldn't get out fay after day I was in the house. I almost laughed when he said my pain was due to me feeling down. My gp told me to go home and make myself get out of house go for a walk etc even tho at the minute I cannot stand for any longer than 5mins without my back starting to hurt. Anyway he put on my file on his computer in.big pink writing when u go to open my file this patient is abusing drugs I nearly passed out. I asked to see another doctor in the practice last Tuesday and when he put in my name to computer that drug abuse thing was flashing as soon as my name went in. So if I go to.any hospital and they put in my name that comes straight away so now I'm going to have this following me. I told the doctor I have no quality of life atm I can't do things with kids I'm useless in the house.

So ur not alone with this. I hop you get sorted. Push on to Ur gp abt getting an mri scan done then they will have the proof in front of them what is happening with Ur back. Sorry for long essay I had actally shortened it lol. X

[SteveHartnett in reply to anna79]

Hi, sorry to here your problems with your gp. I had problems with mine a few years ago now, so I ditched him and got a much better one. I have had the same problems with Pain Consultants as well. One I ditched and I was told she is the best one in the hospital. Well I wouldn't liked to see the best one !!! To date I have gone from here in Birmingham to Oxford to Liverpool and I'm no further forward in terms off my pain.

Steve.

[Leelee16661 in reply to SteveHartnett]

Sorry to hear that you have had such a hard time of it. Keep fighting! Lx

[Steve49 in reply to Leelee16661]

Hi.

"Thanks" Yes things are very interesting at the moment !!!!!

I should now better as I worked for them

For "10yrs""

I also had major stomach surgery last October. "Guess what"

Yes unfortunately I have got the same problems!!!

Somebody doesn't like me I think!!!!

They had better watch out as I take no "Prisoners "

Steve.

[anna79 in reply to Leelee16661]

THANKS☺

[SteveHartnett in reply to anna79]

No probs, glad to help you. If you require further Help please contact me??

Steve.

[anna79 in reply to SteveHartnett]

Thanks.☺

[Daisy71]

So sorry you're having such a difficult time ,really hope things get better for you soon. I also have had constant lower back pain with intermittent sciatica and what I have come to realise (?) for me,is that the pain and discomfort is down my emotional state.

Although it would makes sense, anxiety=flight or fight =tight psoas etc it's difficult to believe such extreme pain(that painkillers barely touch) can have its roots in emotions. The reason I am more convinced is I had to get a short course of beta blockers for anxiety!/migraine, Propranolol +diclofenax (?)

Anyway, the effect was amazing, first time in 6 years I could image being pain free. Still have pain, cause don't like being on beta blockers too long, but not nearly so extreme and now I am very aware the pain is worse when stressed (if only I could manage that without drugs!)

[Leelee16661 in reply to Daisy71]

Hi yeah my Physio told me try to not get stressed because that could make it worse (easier said than done!) I dream of the day I can go without drugs! Hope you get continue to get relief! Lx

[Lou_inpain]

I really feel for you but don't give up. There are things they can do for instance I am waiting to get my second lidocaine infusion and btw have also been branded a drug seeker by one nasty GP who was an eejit!! I suffer neuropathic pain and my inlaws told my husband to basically leave me as they can't understand that I'm still in horrific pain following an accident last year. Just because physical wounds heal doesn't mean the nerve damage has. Unless you have experienced neuropathic pain it's hard to understand. I'm only 29 and get very frustrated. I find these forums helpful and I have been referred to pain psychology team for help as well. I don't want to accept that this might be my life. I want a cure and I don't think there is one. Have you seen a pain consultant?

[SteveHartnett in reply to Lou_inpain]

Hi, I have suffered also got neuropathic pain 9yrs now. I think I have tried nearly every tablet that I can take with little help to date. Yes people think I'm going barmy when I try to explain my "Chronic Pain" I also get well I'm in Pain !!!! We can't just take some paracetamol and away it goes. Yes there is things that can help us I'm convinced off it. I have been referred for some Deep Brain Stimulation for my pain as I found out about it threw researching it. It has been used for Chronic Pain on & off for years. I have been to numerous NHS Hospitals but the NHS won't fund me.

Sorry for gassing away.

Steve.

[anna79 in reply to SteveHartnett]

Ur grand thanks Steve

[SteveHartnett in reply to anna79]

No probs, please let me know if I can Help you further.

Steve.

[Leelee16661 in reply to Lou_inpain]

I am waiting on the pain management consultant, I live on the Isle of Man so it's quite a wait. Fighting to get seen sooner though cause I don't know how much more I can cope with! I dream of a cure but no one seems to be able to give me one. Keep strong! L x

[SteveHartnett in reply to Leelee16661]

Hi, don't worry I'm having the same Problems here!!! I have had the Pain sine 2005. It really Grinds you down, we have to stay Strong!!!

Please let me know if I can help you further??

Steve.

[anna79 in reply to Lou_inpain]

My gp.said I don't need to go to pain clinic as he is dealing with me and that shud be enough

[Lizzi236]

Wow this is the exact same for me except I think my pain is more under control as I don't need crutches tho I sometimes use a stick. I have new pain in my left hip and I intend to mention it to my doc at my next appointment so I'll see what she says. Tho I doubt it will be any use! Try to stay positive as you need to remember the depression pain circle. Ask a friend to get a pain management book from the library as these cover everything under the sun and it's worth trying everything from a tens machine to laughter therapy, diet, meditation , holistic/alternative approaches and mind approaches. Remember you are not alone.

Lizzi.

[Leelee16661 in reply to Lizzi236]

Thanks for the support. We have to stick together. I hope for the day when my pain is more controlled. We have to keep strong! Lx

[johnsmith]

Thanks for the essay. It was well written and easy to follow.

You have followed the medical route and found it wanting. A physio was not helpful, because the NHS approach of one size fits all does not work.

No one has checked how you use your muscles and how your muscular usage contributes to your pain and discomfort. Tense muscles are weaker than untense muscles. The tenser a muscle becomes the weaker it gets. You end up in a feedback system muscles not strong enough more effect made which in turn makes the muscles weaker.

You probably have muscle spasms in all sorts of places which need to be unspasmed in order for the muscle to regain their strength. This the domain of massage therapists, yoga teachers, McTimony chiropractors and Alexander teachers.

Over tense muscle will cause tissue to become inflamed and bones to hurt. Muscles spasms in the back will cause pain and discomfort else in the body.

McTimony chiropractic can treat the muscle spasms. Alexander Technique will help you develop the skills to prevent yourself from having muscle spasms.

You are going to need to learn how to study and observe yourself. Buddhist meditation and mindfulness is useful for this.

Hope this helps

[Leelee16661 in reply to johnsmith]

Thanks I will definitely look into these techniques to see if it helps my pain. I will try anything right now. Take care Lx

[Ktchard]

Hi there it's destroying when you have constant chronic pain especially the nerve type pain did not say your Gp wouldn't refer you for an Mri that's the scan that will show up ateries,nerve,muscles and basically everything in your spine I would push for that hun. I know what chronic pain is I suffer with cervical osteoarthritis, including bonespurs, 4 slipped disks ranging from c3 to c7 all the disks are now dehydrated and have two nerve roots being compressed along with moderate left side moderate stenosis. It took me six months of going to my gp on an almost weekly basis asking for an mri as I knew there was something very wrong with my neck in the end I was offered an mri an mri which reveled a lot more than expected also I have a mild curve in my mid thorax alondg with a depression which was caused by a heavy piece of construction metal hitting me in the back when I was 15 I am now 32 & never thought I'd be in pain like this. Im sorry to sound a bit negative I just think the sooner you find out what is wrong with you the better for your recovery.i take ibuprofen ×3 400 mg daily also dihydrocodine 30mg 4× daily & like you was given diazepam 5mg only 15 tablets to take when I get bad muscle spasmsbut I have an appointment to ask for more they do help more than the opiates sometimes I also get oral morphine 10 mg when needed but iv been taking this a lot more latley. Ask your gp to refer you to a pain specialist im currently on the waiting list and have been told it could take around 18 months. I think with back problems its a kinda try anything and see what gives you maximum results. Keep up with the exercise its boosting the bloodssupply to the weekened and pained areas. I really do hope you find something that suits you try yoga and walking is good. I know what its like when family members don't understand your pain my family just sweep my conditions under the rug and say all I do is moan but they don't know the pain. I do hope you get the mri all the best for the future if you want to message me about anything il be happy to help even if its just for a chat good luck.

[Hidden]

I find with lower back pain and on going nerve pain you need to keep your mind busy to take it off the awful pain i do jigsaws read books make models crosswords to keep my brain active and not just sit and moan on the sofa i cant walk far i use a stick at home the stairs are a battle sometimes.

Not seen a pain specaialist but ive had physio and hydro which did nothing for me at all i try to switch myself off from my on going pain its not easy but i do my best the drugs i take help but its still with me day in day out.

With the NHS you need to be very pushy and firm dont just give up ask for MRI took me a year to get one that after 7 gp's all said no

Good luck and dont give up

Back pain wont kill you it will just torture you

[Kermit77]

Hi there thank you for the advice were very similar I also do jigsaws to make my nerve and back pain more bearable but unlike you I've been like this since the age of 20, I'm now 51 and I've had two operations on my lower back and pelvis I found the pain clinic completely useless and now I cannot walk any great distances that's why I bought a mobility scooter which is first class ( when I'm able to get out of bed) but best. treatment by a country mile is my acupuncture which again is dependable on my source of pain and how it manifests itself. Thanks for giving me the opportunity to talk so openly with you its such a relief to feel I'm not alone Kermit 77

[astitchintime]

Have you seen a chiropractor? Well worth going to. I have read some of your message.

Bernadette