The Back Story

[Matildathecat]

Hi to all fellow back sufferers. I've been on Spooning for a while but don't really feel I fit as I'm not actually ill, just have a chronic (and permanent) back injury. So please post here, no niggle too small. We can share experiences, tips and moans!

Quick history, age 48, last year had sudden crippling back pain eventually diagnosed as disc prolapse L4/5. All conventional treatments tried and failed so had micro discectomy privately.

No progress, and much worse leg pain followed. V long story short was finally seen by second neurosurgeon who diagnosed severe scarring around the nerve root as a result of the surgery. Poor outlook for surgery but we gave it a go, so had second op with similar lack of progress and final MRI showed even worse scarring. Only option chronic pain management . Had several injections with not much effect...

So, permanently disabled, use a stick, endless drugs and a lovely blue badge. Along the way dismissed from career of 25years for ill health.

Sorry, it's a grim story, but hey, I'm ok. Not depressed, have an okish quality of life with the help of my fantastic husband and friends. I walk, albeit slowly and not far, swim a bit and can please myself. Luckily my boys are young adults.

So come along and share. Moans and groans ok, tips and recommendations welcome.

Just don't tell me to see your lovely chiropractor, I might just punch you!(wink)

Reviving, glad th dr has been. Drugs will at least help the pain. What is your situation, may I ask? Working, dc etc? It's worth doing a bit of planning now and getting help lined up since this is likely to be around for some while.

Can you get a cleaner if not already got one? Online shopping etc, etc. make it clear to anyone who asks that you are seriously injured. It helped me so much to have an actual diagnosis after MRI. 'Bad back' sounded so lame. Sadly I paid for the scan.

If you have pure codeine tabs, do take with paracetamol. They work better. Last time I was in for surgery the anaesthetist was discussing post op pain relief and said I'd have oral morphine and paracetamol. I won't need the paracetamol, says I. Surely morphine enough? No, he said, opiates are greatly enhanced by paracetamol. In fact, most of us take a combined tablet such as cocodamol. I know you are barely walking but of course be careful of driving etc when new to all these drugs, they can make you feel very odd.

When my disc first went, a few weeks in I was lucky enough to see a lovely consultant who did a version of this on me

www.thestudentphysicaltherapist.com/slump-test.html

It's a fairly strong indicator of a disc prolapse if positive. I simply cannot understand why gps aren't trained to do this as part of their examination. I was strongly positive. I'm guessing you would be, too. Please take it very, very slowly and gently.

Pavlov, hope the scan went ok and you get the results soon. So frustrating to wait for the result of a scan on you!

Sorry

www.thestudentphysicaltherapist.com/slump-test.html

Thanks matilda that is very interesting about the paracetamol I will definitely combine. i didn't do that slump test but she felt my legs and spine. this did not hurt it is twisting or standing too long. I realised one reason I could not sit on the loo is that it hurt my bad leg to be pressed on the hard seat. So I have put soft cloth over and a chair to lean on but it is still difficult to sit long.
I am ok for housework child care etc as dd is 9 and dh is able to fit things round work, also my mum is coming to help out a bit a couple of days but it is not ideal we will struggle a bit.

reviving glad the GP came out. And, you say don't take all those at once. I have done that on many occasions sometimes, it's all you can do when the pain is horrendous. The diazepam is actually amazing for back spasms. I have always been so so careful about taking them I didn't want to at first (I work with among other people drug users and diazepam addiction is probably the worst with many of my clients so I have always been fearful of becoming addicted), but actually 2mg x 3 daily for 2 days and it makes a HUGE difference to pain levels and can get you up and moving again. And two days (actually more than that even but I don't take it for longer than that at a time) at that dose won't cause long term addiction. Agree completely with matilda about paracetamol alongside other meds. It's a surprisingly good painkiller. I hope you find some relief soon.

Had MRI. Over an hour to wait due to an emergency. Blimey did that emergency patient make me feel lucky. It seemed that person was not having one MRI, but several, looked liked she had been in a car accident. She did not walk in lets just say.

Funny thing happened though. I walked into the MRI room fine, stiff and slowly but nothing significant. I got on the bed fine. The staff were friendly, kind but didn't help me on as I didn't need it. However, as I came out and one staff member took my headphones off etc, I went to roll off the bed doing a log roll and the other staff member who I presume was the radiogropher as she had been in the other room came over to me, quickly and helped me off the bed, helped me stand up, put her arm out and held me as I walked out, like she expected me to struggle more than I was. She actually guided me to a seat, 'helped' me sit down and gave me my boots. When I was done, she came out to get me my stuff from the locker and was being really really nice! DH said 'wonder what on earth she saw on your scan then?!' I think I am just not used to hospital staff having time for anything other than the courteous split seconds they get. And it was proper busy there too!

I went to work. Stoic me! My boss was very appreciative, as there was no-one in my team in! He practically cheered as I walked in, very unlike him I struggled a little but managed it ok, just have to work standing up quite a bit at the moment, and need my crutch if I am walking further than a few yards in case I twist and back goes. A colleague said to me that she was surprised I was always so smiley. I asked her if she was talking about the wrong person, then wondered if the meds show on my face, as I am not a smiley person at work

pavlov that reminds me of a friends story of her scan, she had to pay privately as they were all a bit dismissive and said it was nothing, but the scan showed it was so bad the Drs all came over to help her out of the machine and fussed like anything.

reviving I doubt that! I have had two scans in much more pain than I am in now. I am even doubting there was much going on. Once again though I am doubting whether there is even pain at any real level and perhaps it's all in my head. Does anyone else ever worry about that? I mean, I know it is real, but it seems to have gone on for so long, I am in pain all the time but it's not always high level pain, I just think, no, it's not really hurting that much, I am just making a huge fuss, it's actually inflated because I am tired, sick of it. Instead of being the raw acute pain from the beginning (where you are now), it's sort of become so normal and constant I think that's probably why I am doubting it.

But, with cauda equina it can actually happen with very little or no back pain at all so I guess in some cases people do walk fine into the scanner and then have everyone fussing, as if they move wrong, it could be really fucking bad! Disclaimer: I have no cauda equina symptoms so that doesn't apply to me

Sorry didn't mean to sound worrying I think my friend had a trapped nerve in her thigh, not sure exactly, but the thing was no one would believe her how painful it was. They acted like she was putting it on.
I'm sure the results come back quick if they see anything urgent.
I think with long term pain you do get used to it to a certain extent esp if you have painkillers. But that doesn't mean it isn't real pain as you probably limit what you do to compensate. If it were improved you could do more.

oh you didn't worry me! I would kind of like there to be 'something' wrong. So it explains why I am feeling this way. I should be out there running now after surgery, bodyboarding and getting proper buff and yes I absolutely restrict what I do. And, I fucking hate it.

Then I wonder, is it really that bad? Should I just crack on with stuff and not wait. But, then I do, and floor myself. DH says I am trying to do too much, but ffs I had surgery in June, that's 4.5 months since surgery, I am not sure how much more little I can do.

I am bad with painkillers. I don't take them as often as I should. I preach about it to others, but am shockingly bad myself

How are you feeling today?

How is everyone else? We are all quiet, do you think some of us have lost the thread? I did for a while.

Been lurking, but feeling a bit quiet about stuff. Looks like I won't be having the radio frequency for a while yet as when I phoned up a month after to check whether I'd been approved I found that whilst I had, admin had lost all the paperwork needed for the referral and the pain nurse has had to rewrite it.

In the mean time meloxicam is now upsetting my tummy, I've tried so many and meloxicam seemed the only one without side effects. Psoriatic arthritis is in a flare and its clear the steroid jab has worn off and so I feel thoroughly rubbish.

I usually doubt myself too and wonder if everyone else is in pain and exhausted but just get on with it. Is this what life is supposed to be like and I'm just pathetic?

OYBBK so sorry you are having a flare-up and stomach issues with meds. And what a cock-up for your referral! Although delays and delays and hope and delays seem so usual.

Yes to in pain and exhausted. And yes to wondering whether everyone around me has pain and is in the same boat as me, and I am just more pathetic at managing it than those. But then I remember I didn't find it this hard when I was younger. And I then I think, it is perhaps that I am just coping, am depressed etc and not so much in pain, just not quite managing so well mentally. And then I think, NO! It's pain! it really is! And it's a viscious circle I struggle to break from, and then I actually do get down.

So, no, it's not just you being pathetic and no I don't think everyone else does walk arounds suffering. You have a very real and very debilitating condition, as we all do here, and thank god for you guys else I am certain I would absolutely just blame my mind.

Pav, I'm had a similar reaction from the MRI staff. It has been hurting more this week, back to taking the tramadol with the inevitable wooziness it brings. It was such a relief when the osteo showed me the images, to actually be able to know there is something wrong rather than my crap pain tolerance.

Oh kitten, that sounds terrible, I am so sorry. :(

I'm so used to referrals being cocked up that its standard for me to phone after a month or so now to check it has happened. The chasing makes you doubt your self too doesn't it.

Snap though about this thread and other similar ones and being able to chat with you guys because its when people say oooo, I have arthritis too and ruefully rub their knees or whatever and it makes you wonder if you are wasting resources by trying to get it treated and sometimes people say oh it's all because your getting older - they don't get that you've had it for years.

Pavlov, wait until your MRI scan before trying anything! Also my physio says that mris show bones and soft tissue, not pain. If its painful, don't do it.

Kitten sorry you are in the middle of a flare, and with the medication irritating your stomach. I presume you are already on some kind of stomach protector medication? I work in the NHS (only very PT now) and its sad how non trusting I have become about the 'systems' especially referrals and appointments - since my son (with his disabilities) arrived!
I splashed out and bought a wedge cushion for the car - Putnum 8 degree wedge. I did not know if I needed a cut out or not so got it without. It seems helpful but it is early days yet. As I have short legs it means I have to sit very close to the steering wheel as the extra height pushes my little legs further from the peddles. I am still getting used to it! I can at least see over the bonnet! DH is away so not being able to sit to drive was a problem ds has lots of appointments all in different scattered around hospitals.
Do herniated discs ever put themselves slowly right? Has anyone managed to get vaguely stable without surgery? I have a worry that my latest episode may have been triggered by overdoing the pilates which I only can do at the lowest level for 45 minutes a week. CFS/ME has made me weak!!
I do not think people understand how disabling back pain and the physical weakness and limitations that goes with it is. My troubles are relatively minor in comparison with many of you here. I would wish you all well if I could.

I take lansoprazole along with it. I guess I need to go back to the gp or phone the consultant. I've just run out of energy though, so I can't actually be bothered to go through the whole trying to get an appointment. I'll give it a few days and try again, perhaps a bug exacerbated it or something.

I think if you are dealing with cfs and back issues then you are dealing with a lot.

Not the best day of recovery so far. I am about the same. Haven't walked about as much as I meant to as so uncomfortable and drugs making me feel very sleepy.

Have ou got into a routine as to which drugs to take when?

Pretty much I am writing it down. It is bad when all wear off. The diazapam makes me sleepy and now I am taking 60mg codiene at a time it seems to make me sleepier too.
I am worried I am not pushing myself enough to walk about. It gets painful quite quickly and I stop.

Pain rather than ache means stop.

Not surprised that you are struggling with sleepiness, I can't get beyond 30mg of codeine at a time without spending the day comatose in bed.

reviving I must say, I personally think this whole 'you got to be walking around and not in bed' business is a pile of crap. I mean, I am not saying it's ok to spend days and days in bed. But when you are in acute pain. You have to rest. I consider, on those days, moving around being that I get out of bed every 1-2 hours and walk to the toilet, or, walk down stairs slowly and back again. And that is it. You can also do some exercises in bed, to keep your back moving. So, while it's not good to lay completely still for hours on end, moving does not have to be going on walks or pushing yourself to the point of increased pain. There is a great book 'back sufferers bible' by Sarah Key, a renowned physio, which gives great exercises for different phases of pain, acute, semio chronic and chronic. I would advise you get a copy (and everyone else too). It is really good at explaining what your spine is doing, why, and how you can help it recover.

She talks about diazepam use in it. She says that if you need to take it, you need to take enough to pretty much knock you out (5mg she recommends).

Do not stress that you can't do enough moving around.

scone I am so sorry i never responded to your post about your MRI results. I did read it, and didn't respond as got distracted responding to another post or ten! No wonder you are in so much pain I hate the waiting around not knowing what you can and can't do. That's why I was so pleased following surgery as I knew there were limitations and why, but that in time I would be back on track and doing lots again. Yeah Right. Hope you don't have to wait too long.

I'm Having a Bad Pain Day today. Feel sick, meds making me feel more sick, mostly back pain not leg pain though, which I see as a positive as yesterday the leg pain had increased. I am going to work but emailed to say running late. Just taken meds on empty stomach which I know is Really Bad but I can't face food due to feeling sick due to pain. and that cycle has to be broken. I promise I won't do it again today. I have taken omeprazole with it though. So that's alright yeah?

I totally agree about the activity levels early in injury. I was terrible, but that was because I didn't have a clue. I was trying to walk the dog etc. pavlov's suggested routine is much more sensible. Just don't seize up and try to give your core muscles a little flex, too. This won't hurt your back. If sitting is still painful, don't. I still eat standing or lying and avoid sitting if I possibly can.

Not surprised your head is woozy. You can always take 30mgs codeine with 2 paracetamol which will reduce that fog a bit. Codeine is an opiate so even 30mgs is a lot.

Pavlov, you're a trooper! Hope your day isn't too vile. Happy to tell you about my work experience let me know what you need. I'm bad at eating, too. I went on a very adventurous and really looked forward to trip to London on Monday to see an exhibition with my best friend(Saint). Suffice to say the trip was almost aborted after a very near miss vomiting episode on the tube. Is it worse to vomit on the train or escalator? Felt really grim.

Thanks that makes me feel a bit better i will look for that book pav the dr said i could increase my codiene to 60mg when i explained how i am having such problems walking and getting to the loo but i might reduce it back to 30 plus paracetamol unless i really need it. My mum gave me one of those stick on heat patches today which feels really nice. Mum will be here all day tomorrow and i am going to try to do a bit more as feel safer with someone on hand in case i get stuck, dh is here but asleep at the moment, he works shifts.

Heat patches, another subject I have studied in depth! The Wilkinson own brand ones are brilliant. Work just as well as more expensive brands and cost much, much less. Was using constantly for a long time. My back looked very strange and mottled but I didn't care.

thats worth knowing. Branded ones are too expensive to use regularly.

Coop pharmacy have lavender wheat bags (long thin shape) to warm with the microwave at £2.50 which is half price. Ok for in the house.

Stick on heat patches? What? Ones that you can wear as you go along? now have I missed those! I got one that you wrap around you, and a new belt that you insert the cold\hot, but it's bulky and not comfy, if there is another one! links please?! I have just had a loooooong soak in the bath to ease back, and the dreaded returned leg pain. A patch that I can wear around and about especially at work would be fab!