Nervous newbie :-/

Hi, iv just been reccomended this site by my consultant. I have been in severe pain for just over 2 years now, caused by 2 discs in my lower back.

Its been the hardest 2 years of my life. My youngest was only 2 when this started. I have not been able to lift her since :((

I am on high dose of MST, pregablin, naproxen and sevredol for breakthrough pain. Diazapam for spasms. Iv newly been given temazapam to help me get off to sleep.

My consultant has said apart from the epidural injections , then while im still walking and able to get about they wont operate!!

Is there anybody in a similaar sra situation???????

20 Replies

oldestnewest
  • Did your consultant mention anything about fitting a spinal cord stimulator? Its a bit like an internal tens machine. I also suffer from chronic pain but I'm much older than you are, so I hope you can contact someone of your own age to chat to. There's a lot of SCS information online and also on Facebook. X

  • I have heard of this. Its not something he has mentioned. I get injections into my discs. Iv had it 3 times now. First time worked great for 2 months. 2nd time made me worse. 3rd time took a while to kick in. Got it done 1st september and thats the intense pain coming back when i walk/move etc.

    ill take a note and enquire about it. Thanks for your help. :)) x

  • Welcome aboard Ang 34

    If your consultant recommend this forum then we must be goo!

    Not sure if you will find someone with your conditions but approach to pain is all basically the same. It iss so hard when you are young and have a young family. So,e of us maybe a little orlder with grandchildren. Plus al the other bits that stop working or fall off with age!

    Yes it is so hard not to be able to [[ick up your daughter and learning to adapt what you can do is a huge part of managing your pain. You learn to do things differently yet still have the contact she needs.

    We often say - if an able bodied person wants to know how to do something - ask a disabled person! We wil have found a way.

    You will get bucketfils of support here and lots of rants = whatever you want. Hopefully medica; advvice as well although we aren't Doctors and each person is different.

    Good Luck

    Pat x

  • Hi Ang, I had a three year old when my back 'went' so I feel your pain! But like Pat said, you can still have plenty of physical contact and try not to focus on the negative. Easier said than done and completely normal and understandable but you will cause yourself further distress. If you can zone off the panic and catasthrophising then you will be ahead in this nightmare. It will allow you to focus on getting the most appropriate treatments and looking after yourself in the best possible way. Have you tried physical therapies? Keeping your spine mobile or at least the rest of your joints and discs that aren't degenerated? How long have you been taking all those drugs and are they working? Anyway, welcome to this site. You will find lots of help and kindness here. Have a rant, look for solutions etc... We are all here for you!

  • Hi Boozybird, thanks for your comment. I have been taking sevredol for about 18 months. The MST must be about a year. Its them that worry me the most as my body is basically functioning on morphine! It must be causing damage inside.

    I go to a great therapist. I started with reflexology then went on to indian head massage and recently reiki. Im finding the reiki beneficial so far.

    Im finding it so hard accepting the problems i have. I feel really angry and frustrated. I dont want to feel like this. I tired of the constant pain. I often wonder how much longer i can carry on :(

    This is t depression talking. It me being completely truthful. The sacrafices and the impact this has had on my family is huge. Its not fair for them!!!

  • Hi Ang, your feelings are completely normal and I know exactly how you feel as do others here on this site! It's actually devastating for you and your family and we just want to get back to normal!! It sounds like your pain is not under control so you may want to consider getting a second opinion or getting referred to pain management. Write down the impact this condition is having on your life and take someone close to you who can talk on your behalf if you become overwhelmed! I put on too brave a face and everyone thought I was fine! Geez!

    The other thing is - and this is controversial I know but reiki and reflexology might help you relax but they won't alter disc cell metabolism so won't be any real use! In my opinion, physical problems need physical solutions. Rafael Nadal the tennis player has just had stem cells implanted in his discs so this therapy is on its way and could be game changing! Otherwise for us who don't have £100k to spend that leaves physio but a good one who can mobilise your spinal segments and help you get moving again. You have the rest of your back to think about and hips etc... Can you find yourself a really good physio? Forget nhs they only have time to talk at people! You need some physical help! Xxx

  • Surgery is all ways only done as a last resort generally when mobility has been lost and all other treatments have not helped the condition so you are not alone as it is standard procedure. I am waiting for a MRI scan to find what is wrong in my back as it is now severely affecting my mobility now just hope it can be sorted out and get back to normal. Hope you feel better soon mate just keep pushing on and get better. Best Wishes and Good Luck. Poohbear

  • My back pain is due to trapped nerve in lower back and was told by my surgeon that he would not operate or give me a epidural as the risk was far to great ,I am on several tablets including morphine both long ,and most and still can hardly walk the length of myself.I am sorry you have a young child as myself struggle to cope with my grandchildren,have you tried a tense machine in my younger days it took the edge of it.I hope you can get something to help so you can enjoy your baby.

  • North American Spine may be able to help you, @Ang34 -- You can check out some of the procedures here: northamericanspine.com

  • Hi thànks for your comment but i live in the uk. :))

  • Not in a similar situation. There are lots of things you can still do.

    You need to look at the little things that can help take your stresses down.

    The body has a stress breakdown point. The big stress plus the little stresses all add up to one large stress.

    If you go over the stress break down point the body as an engineering system will malfunction big time. If you remain under the stress break down point the body will still function albeit with difficulty. This is why it is important to start tackling the little stresses.

    Things for tackling little stresses: Am I getting enough sleep? What can I do to catch up on the missing sleep?

    Am I over tightening the muscles and so cannot move easily and efficiently and effectively? What classes are available to enable me to move better. Ie Alexander Technique, Yoga, T'ai Chi, and massage.

    Have I locked my back up and as a result applying more pressure to nerve roots? McTimony Chiropractic may help unlock the back.

    Is my mind contributing to the stress? What classes are available to teach me things like Mindfulness and Meditation to help remove my mind's input to the stress I am under.

    Hope you find this helpful and worth exploring.

  • Hey Nervous Newbie, don't be nervous here - we are all in your corner and definitely don't bite!

    Of course your medics, quite,ethically, want to be certain there is nothing than can be done conservatively before they consider surgery. It's not the 'easy' option. It can leave rigidity in an area which causes further problems in the balance of the spine and surrounding areas.

  • I take Zomorphe oramorph gabapentin etc etc for back pain , I have /had a good pain management team but stopped going as they said due to the injections short lived effects it was not worth continuing with them! in all honesty I thought they were worth the intial couple of days of extra pain just so I could have a couple of weeks where I felt almost normal! proper sleep more confident etc , so I know how you feel Ang34 ! I think your consultant is covering himself as Spinal ops are apparently as dangerous as heart transplants due to so many variables ie instead of slouching and shuffling around you can end up permanantly in a wheelchair or worse ! least thaats what I was told!!

  • Thanks for your response Dell101, after i get the injections the pain is worse for couple of days then i get about 2 months of releif of the severe burning type pain in my leg. It doesnt make me pain free but i will take any kind of releif.

    On one of the occasions i was admitted to hospital i was in neuro surgery. After another MRI the consultant took my husband and i in a room and was very honest. He said the reason they wont operate is of the major risks. I could end up alot worse than i am just now, basically in a wheel chair. If it comes to the time i cant walk then the operation would then be on the table.

    I try to think that things could be worse and there are people that have alot more to deal with than me. You can think it but it doesnt make you accept your situation. :(

  • Hi Ang34

    I have the exact same condition and have been suffering for 31/2 years so I can relate to what you are going through, it's awful isn't it. When you say that you have chronic pain in your back people really don't 'get it' do they! It's more than that, it is all encompassing pain that invades every area of your body, well mine has anyway. It has changed me 100% forever and I don't think I will ever be the bright, bubbly, independent person that I once was. It's gets to the stage where you no longer remember what it feels like to be ' normal and well' don't you think? I am here for you if you need a moan, it helps you know! I have had 3 facet joint injections and 2 of them helped and I am waiting to have a 4th to see if I can reduce the morphine patches I have ended up on. They do hurt but it only lasts a few minutes and if they work it's worth the pain just to get some relief. Take care xxx

  • I completely agree. I am not the person i was. That is hard not just for me but for my family. Im lucky as i have a very supportive family. I would be lost without them.

    I feel as though i am so angry at my situation. I just dont want this. How do you cope? You have had this for longer. How mobile are you out and about if you dont mind me asking?? Do you use a stick etc

    Its helpful to know that its not just me that has this problems. It would be good to have someone to talk to that can relate to my situation. :))

  • Hi Ange, I know you say the problem is your discs but what exactly is wrong with them? Are they bulging, degenerative or something else? X

  • Both to be honest :-/

    Wasnt till my 2nd MRI that they picked up the degenerative disc underneath the disc that causes me alot of problems. It wont go back into its correct "slot"

  • I have already had to get a car because i could no longer walk to work and i have that many hospital appointments i felt bad asking my family to take me all the time, another thing for my fragile mind to worry about. I have a daily battle with myself, i have lost all confidence and no longer want to do the things that i enjoyed doing prior to the onset of the pain. It has just ground me down to a shell really and like you i am so annoyed with it, i hate it with a passion. It has taken my life away as i knew it, that is the way i feel anyway, i cant deal with feeling any other way.

    My family are very supportive but i don't really talk to them about it because it upsets them. It upsets my husband a lot because he feels helpless and also annoyed that i cant find medication that helps without drastic side effects that i always seem to suffer from. I have lost a lot of weight recently because i am using Morphine patches and they have affected my appetite so much that i don't eat for days, i struggle to swallow my food and recently had an endoscopy to see if they could find anything but they couldn't. My GP wants me to come off the patches but he has no other alternative for me to take because i have tried most of the other stuff and again side effects made me come off all of them.

    My 'kids' are 24 and 21 and i have gotten to rely on them so much it hurts, again all because of my health.

    its like the PIP assessment i am having at home next week i sould really have some one with me in case i get upset because i am sure i will but I don't want or cant really have anyone with me because i wont be able to unload all that i am feeling and the daily problems i face, but don't admit too, because it will upset them once they realise the full extent of my turmoil, if you understand what i mean.

    I hide away a lot of my pain and anguish from my family as well as friends because it just upsets them and they cant really do anything to help the pain can they. They already do enough for me as it is.

    If my friend from next door sits with me she will just be mortified if i just unload everything, she wants me to give up work or change my job anyway and this will just give her more ammunition to 'bully' me and she would probably feel the need to tell my husband as well.

    I cant give up work, its all i have left of myself (pre-pain) really and if i do then my pain will have beaten me, wont it?

    This is what i keep saying to myself. I constantly say in my head 'Di its just a bad back, get a grip girl' but it doesn't help :-(

    I'm sorry I am having a right old moan here aren't i, the thought of this meeting is freaking me out.

    I am between a rock and a hard place really because i cant speak to my family about it because i don't want to worry them, thank god for this group of all you lovely people.

    I have a constant ache in my legs whether i sit or stand and get very breathless if i try to do anything. Anything tires me out, i can no longer clean the bathroom and i am nervous getting in and out of the bath to take a shower. I cant walk very far without feeling tired, more so when i stop really rather than when i am walking. i struggle getting up and down from sitting and need to use a table or an arm of a chair to get myself up. I don't use a stick, i will be so upset when or if i get to that stage, not that it would embarrass me but i don't know what it would do to my already fragile mind and my self esteem.

    I have still not come to terms with the fact that this is going to be forever and i need to deal with it.

    I am sorry if i have not given you anything positive, i am really having a bad day today, hopefully talking about it will make me feel a bit better and knowing there are other people in the same boat does help an awful lot

    xxx

  • I can so relate to what you have just said DianeT. Where do i start………

    On a positive i think :-) i had a pip assessment and it was fine. The lady i had was great. Sometimes its hard to put accross just how bad things can be without getting upset. I often get upset when at hosp, docs appointments etc it comes from complete frustration i think. My advice to you when the person comes is to tell her what its like for you on a bad day. You have to be honest and tell them what life is truly like for you. I know its hard.

    Im surprised by what you have said that you are able to carry on working. I imagine that is getting very hard for you.

    I have got a stick but very reluctant to use it. My husband just doesnt understand it. My reason for not using it is that i feel i shouldnt need it??? How ridiculous is that. I suppose it comes with acceptance :-/

    I dont have baths now as it would be agony getting out. Iv put on 6 stone in the 2 years since my back problems started. I used to walk all the time. Back and forth to playgroup/school etc. then in the evenings with my neighbour. Of course no i struggle to walk round tesco :-( I have just started thyroxine as they have discovered my thyroid is under active. So thats another tablet added :-/

    Life does suck at times then one of my kids come and give me a cuddle or say something to make me laugh. After that it will see me through that day. The thought of not being at my kids 18th birthday or when they get engaged. At the moment that is the kind of things that are keeping me going. Im going to have to get a grip and get sorted out. :-)

    I go to reflexology and reiki each week. This last few weeks have just been havin the reiki. i dont know if you have ever tried it but i find it amazing!! I know its not going to sort my back but the relaxation part is magic. I come out of her room a different person than from when i arrived.

    Please get in touch when you have time. It would be great to hear from you again.

    Take care

    Ang. X

You may also like...