Living with chronic back pain - life overwhelming

[parentallyinept]

Hi, I'm new to the parents with disabilities topic, but I'm a long time lurker and I could do with some advice, if possible

I damaged my back 8 years ago. An MRI showed an L5-S1 disc prolapse with nerve bundle compression, and since then I've been on daily painkillers, I've had physio, chiropractic, osteopathy, massage, tens machines....you name it, I've probably tried it, all with only limited success.

Some days/weeks are better than others, but basically for the last 8 years I've been in constant pain of varying digrees of severity. A recent MRI shows I now have an annular tear in the affected disc. My orthopaedic consultant doesn't want to operate, as he feels I've 'managed' so far, and that surgery probably won't make things better and indeed may well make things worse.

When I'm having a 'good' day, I can manage pretty much normally, doing housework, going to work, dealing with the DCs etc, but when it's bad (which seems to be happening increasingly often, I struggle to do anything, and managing the children (oldest of which has ASD), housework, etc becomes very overwhelming, even with DHs assistance.

Any other experiences/coping strategies would be welcomed, as I'm getting to the end of my tether with it all and really don't feel like I'm coping very well at the moment. Thanks for listening.

oh I can sympathise completely with u. ive had a slipped/prolapasd disc which is bulging for over 2 years now. like u have had all the therapeis u can think of. in my opinion my disc is pressing on my nerve as my legs dnt function at all but the MRI did not show this... I have a 2 yr old who is luked after by my dad as I have other health prob's (severely low vit D, Rheumatoid Arthritis, fibro, pcos, IBS) so my symptoms may overlap.

the only thing I can suggest that works for my back apart from all the drugs I'm taking is a long hot soak n a hot water bottle.

sorry cannot be more helpful.

Hi, I am new to this site, I had 3 slipped disc's and 2 tears. I has spinal fusion on 3 disc's. It was so painfull and was in full body brace fir 3 months .I wish I never had it done, I never have good days since this opp and to top it off they put a screw in the wrong place, this as left me with nerve damage in my legs. I had surgery last year to remove screw and in 10 days time I am having more metal work removed. I know how much you are in but if it was me I would not have pop. Have you tryed the pain clinic?

parently, I have just come to bookmark my place here with you, and to say you are not alone. I will post more later but I am a long time poster but new to the 'disabled parents' section with problems with L5/S1 disc, in particular severe disabling sciatic pain and unstable spinal segment. Like you some days I cope relatively 'normally' (but always with some pain now, never pain free, I have forgotten what that feels like!) but on my bad days I am incapable of getting out of bed let alone functioning like a human. I am struggling to work with any real meaning, luckily have a supportive employer (for now) and my life has been put on hold.

But, my one thought is, have you ever looked into the Expert Patients Programme? I will link to it later, but I am going to do this course myself in April, to see if I can learn some coping tecniques that I don't already employ.

You have my absolutely sympathy and support, as backpain, in particular long term back pain is the absolute pits, it is soul destroying in a way I never imagined possible, it is relentless and life halts completely when it's in it's worse throes, so I understand where you are at.

(I don't want to be seen as using this as a 'plug' for my blog, but I do have one! And would love a guest blog from people who feel they can contribute wine cant cure back pain as I want to make it more useful than it is, a sort of collection of self help posts as well as my emotional crap!)

Pavlov is right - it can be soul destroying living with chronic pain, it's so hard when others can't see the source of your pain & you get the usual "oh but you don't look ill" etc.

You defo need to be under the pain clinic as well as your consultant, they can try you on different meds to try to keep your pain at a manageable level, it really helped me gets things under more control. I have damage to my pelvis from pregnancy 2.5 years ago, it's basically worn away, & has therefore affected the functions of my hips & back as well, leaving me in constant pain, stiffness & with locked muscles, I also have M.E which I've struggled with for 20 years since I was a kid.

Have you tried anything less major surgery wise like steroid injections? I'm only allowed 1 a year on the NHS here, but it made a huge difference for a few months.

I have also been told that surgery should be avoided as it may not work or it may make things worse. Plus it is a 12 week bed rest recovery - kind of impossible when I'm a sahm to my 2 year old!

I know how you feel, I struggle with daily living too, I have a lot of help from my DH but he works long days in London. I use my DLA money to pay for a cleaner once a week, & child benefit towards 2 mornings a week at a childminder up the road for my dd.

What pain killers are you on? Tramadol & codeine work v well for me, as well as diclofenac for an antiinflammatory. Luckily I have an amazing Physio who helps keep me going, but it's £40 for half an hour so I can only afford it twice a month. Oh and I use heat pads on my back / hips / pelvis for some immediate relief. Hope that helps xx

You can get your consultant to refer you to a pain clinic or pain consultant. I found that very helpful in the past.

Hi. I had chronic SPD in pregnancy - my pelvis collapsed that caused major lower back spinal issues. In short, now after 3 loads of major spinal surgery including a triple fusion which went horribly wrong, I am disabled. I spend my days on the sofa, pottering around the house if & when I can plus doing anything else if at all possible. I too am in constant pain - I take 7 Tramadol, 7 Paracetamol every day plus top it up with Diazepam & Morphine when needed.

My boys are aged 7 & 8 so are at school. I too have a cleaner - I couldn't do it myself but even if I could, it would not be worth the pain. So, for example, there are things I do that cause me more pain, but I think it is worth it - like going out as a family for the afternoon or (and I know this is mad) getting on my horse twice a week - I am "winched" on, stick my "flappy" leg to the saddle & take morphine, it is the only time I am treated as a "normal" person - or going skiing with the kids - I ski on one leg with crutches & morphine. Yes, I am bonkers, don't ask!!

I have just been told that it looks like my spine is infected & therefore more major surgery is on the cards & I can't ignore it as if I do, I will end up in a coma - great!

What I wanted to say is you are not alone & I know something about how you must be feeling. Many people seem to judge me for my "mad" activities thinking I must be fine if I can do them - they have no idea. I am also terrible as I never ask for help unless I really can't move to even go for a wee, & I avoid people - I now suffer terrible panic attacks, animals are easier!

Things I do that might help (by the way my pain clinic was a disaster but I do know it helps some):

• how water bottles - I have 4 each day, I would rather burn the pain away than take morphine
• take painkillers (I know, contradicting myself) - it is far harder to get rid of pain than to keep it away, if I get it wrong, sometimes it takes me all day to get my pain under control so I can move
• exercise - pilates is fabulous if you can do it as it focuses on core muscle strength ie the muscles around your middle that keep your spine supported. If you can't do it then there are machines like "Slendertone" that work your muscles for you.
• distraction - when in pain, find something you can do to try & distract you from it - sometimes, I will be watching TV, talking & doing a puzzle all at the same time in a desperate attempt to avoid the pain.
• sports massage - this seems to be the only thing that has helped me - lots of my pain comes from muscle spasm so my sports massage person taught my husband to do it so I am on the massage table every day trying to keep my body going.
• pick & choose what you do - to keep you sane, try to do only the things you are prepared to "pay" for or absolutely have to do e.g. look after the kids (mine are 6 & 7). Try, if possible to avoid the stuff that puts strain on your back & you don't like doing as it will save your body to do the stuff you want to do e.g. housework. The idea is try to keep "sane"

I do hope this helps, but please, please let me know if I can help any more. I think the biggest battle I have is with my head, not my body! x

Sorry, just read my message - I promise my boys are 7 & 8, not 6 & 7 - that was last year - madness is setting in!!