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The Back Story

999 replies

Matildathecat · 03/10/2013 16:02

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)

OP posts:
MurderOfBanshees · 22/10/2013 22:09

Good luck Matilda! Will be thinking of you

Peri No, might look in to Backcare though.

OhYouWickedWickedWitch · 23/10/2013 08:57

I hope it goes well matilda.

PavlovtheCat · 23/10/2013 09:04

Good luck matilda is this related to your condition? I hope it goes as well as it possibly can. Hope the long drive is not too uncomfortable for you.

I agree with a good mattress; having had an old one, and a bed that was quite low down for such a long time we finally got a new one following my surgery along with a new bed itself and it is so much easier to get in and out of! I do too much lifting. And I hoover Blush but I don't push and pull, I just pull lift then pull, if that makes sense? (have a henry). I empty the dishwasher too often as otherwise the rest of our small kitchen goes to shit so quickly. I have a grabber now for picking things up off the floor which is an absolute godsend. And a good shower helps! I sometimes go to the gym just to sit in their disabled seat and let the hot water pound my spine!

I miss lifting my little ones (well, DD is 7, not so little now!). I miss that sleepy snuggle when you take them out of the car late in the evening after a trip somewhere.

I am planning on taking the children to the Eden Project next week for their Halloween Monster Ball. Originally we were all going, but DH is now working so he can't come now. The kids have been so excited about it and have their costumes and everything so I won't let them down. They have disabled parking close to the entrance. They also have wheelchairs, including electric ones. Do you think, seeing as it's a lot of walking that I should take my crutches or borrow an electric wheelchair and accept that I will need to do this? Or will that be more faff than walking slowly with the crutches? I am sure the children will be good but if they get tired etc, they might respond better to sitting on my lap than being dragged along with no hands available! I am not feeling so bad I can't walk at all, the pain levels are reasonable at the moment, around 4 or 5 out of 10, but walking is aggrevating not making it better so I anticipate that this trip will see if getting worse as the evening wears on.

PavlovtheCat · 23/10/2013 09:05

Loving the halloween name OYBBK Grin I should go and change mine.

OhYouWickedWickedWitch · 23/10/2013 09:11

Go for it :)

PavlovtheCat · 23/10/2013 22:52

Lazy me still not changed my name!

I have bought TWO pairs of boots. Fly London boots. They are fab! and an absolute bargain Grin
Mes
Mol

in the colours shown. Naughty. Very, Very Naughty. but I am wearing trainers and wellies and that is it as ALL my other shoes are now unwearable, apart from my converse for a short time, and then it's a pain to get them on/off.

I am soo excited about having some funky comfortable shoes to wear, it's been sooooo long!

I have been very good today too - I have asked for help in the supermarket when I could not easily pick up a 4 pack of fizzy water (this is my health drive to drink more water, by mixing fizzy water with a little orange juice as I don't really like water much), I asked for help packing, and the assistant brought the bags from the side to my trolley, told me to leave it all there and he packed my trolley back up for me! And then I had to ask someone to shut my boot Blush

I have not been back to the gym, but have gone for a short walk and done my back exercises.

matilda how did your appointment go? positive news I hope. Hope everyone else is having a reasonably low level pain day and lots of happiness is being had.

OhYouWickedWickedWitch · 24/10/2013 08:00

Good for you Pavlov! (Though both those pairs look remarkably identical, I think the linking might have gone a bit pear shaped!)

I'm seeing my physio tomorrow. Thank goodness. I can move a bit better now (I can get my knickers on which is a bonus!). Hopefully she will be able to help improve things further.

PavlovtheCat · 24/10/2013 10:55

hehe yes, they are the same link oops! one is that link and the other is a pair of knee high ones by Fly also, in grey, quite similar and comfy enough.

I am quite excited about it

Matildathecat · 24/10/2013 11:49

Hello all! Thank you for all the good wishes. My appointment went pretty well, I think. Can't say much but yes, medical. Waiting for report now.

pavlov, love the boot buying we are supporting Fly London pretty well. I can even wear the higher ones. That makes me very happy. Smile
I am also very happy you are staying out of the gym. Can you do any baby Pilates? Little roll downs etc?

Today is not good after all that driving, well lying in the car. Just had a massage and gentle Pilates. I wish you all went to my physio, she's fab. I'm out to lunch which should be a good thing but am slightly dreading. That's wrong, isn't it? But a good example of life with a knackered spine.

OYWW, I am pleased to hear you have your knickers on!!! Honestly, the things we have to put up with.

Btw, as a newcomer to mn, why does everyone name change? Is it to confuse me? I'm confused already...

Now, serious question. How are your other halves or family dealing with this? My DH is fab on the surface. He lifts and carries, shops and cooks. He doesn't complain. But. He cannot do the emotional bit. Refuses to park in the disabled bay. Doesn't ask how I am.

I'm not knocking him and have truly excellent support from friends but am curious how others have found it.

Enjoy the sun if you have it today. It's glorious (mindfulness, don't you knowWink)

OP posts:
OhYouWickedWickedWitch · 25/10/2013 20:40

I namechanged for the halloween comp. Once again I didnt make the short list. I'm sure I'm invisible on those threads :(

I had a physio appt this afternoon. She used a neuromodulator which felt like a rather vicious tens machine but its taken some of the worst out of it. I've also got a lovely SI belt now which feels like its holding me together. The two combined have def helped this evening.

OhYouWickedWickedWitch · 25/10/2013 20:42

my dh is genuinely lovely. Sometimes he forgets when I'm feeling better and still jumps into help and I get a bit irritable with him which is unfair. He does have to be asked to do things like washing or housework. It's not tht hes lazy, its just that he genuinely doesnt notice stuff.

PavlovtheCat · 26/10/2013 11:34

oywww you got noticed here! And I knew who you were ;) glad physio helped. Lots of new things for me to google though!

matilda how is your back today after your long journey in the car? How was lunch?

DH has been great at picking up the slack, he mostly doesn't moan, but he does resent it and when he does complain that becomes apparent. yes he often forgets I have a bad back and gets cross I haven't done something, but then why should he have to remember very second? He doesn't always ask me how I am either. It has, despite best efforts, taken an enormous toll on our relationship. I have changed too, less fun and happy go,lucky and our intimate aspect of our relationship has taken a battering too, this condition has tested our relationship to its max and there have been times I have worried we might not get through it. DH is as good as he can be but, regardless of vows and intentions to support through bad times, it is never in your life plan to be a carer for your partner, not til we are old, is it? And so the reality of this is harder than the idea of being there through sickness and in health. But we are getting there.

And he also needs to be reminded to do things like pick towels from the floor as he seriously doesn't appear to see them!!

OhYouWickedWickedWitch · 26/10/2013 12:31

I had a bad time in sainsbos today. You know what its like when you are sore and slow and everyone else seems to be on speed. Nearly burst into tears as I couldnt find anywhere to stand that wasnt in somebodies way.
Was expecting to hear 'meltdown in the bread aisle' over the tannoy Grin

TabithaMcKitten · 26/10/2013 15:49

Hello all!

I first started with back problems in 2006 after the birth of my first son. I had sacroiliac joint dysfunction and had to have my pelvis rotated and lots of physio. I had had a crash c section under general anaesthetic, both things apparently increase the risk of damage.

I had what I would describe as a weak back ever since. My second son was born in 2008 and I had some sciatica during the pregnancy and then needed some physio after due to my back 'going' on several occasions.

I had kind of just plundered on since then, but last year my youngest son became seriously ill and I ended up having to carry him virtually all of the time because he struggled with his mobility and was very clingy. Obviously I am not blaming him for this, but I think a year of carrying, lifting, leaning, in and out of hospital beds etc weakened by back further.

In February this year I was lifting my son off the worktop and my back pinged. I had a massive electrical shock feeling shoot up my spine and down my leg and that was it then. To cut my very long story short, I was diagnosed with a 'small' disc bulge and a torn annular ligament, spent some time in hospital with suspected cauda equina syndrome, was shouted at by a consultant that the disc bulge was really minor and he had several that he couldn't feel (nice!) etc etc. I was on stacks of tramadol, gabapentin, naproxen etc and was in agony as the teeny weeny disc bulge was actually compressing my nerve, hence the severe pain in my leg and difficulty moving. I tried so much stuff to help (including an embarrassing acupuncture session!) and eventually paid for a private referral to a top spinal surgeon nearby.

This was in April. He was lovely and said that the size of the bulge was irrelevant and that nerve compression was nerve compression regardless of the size. He booked me in for a nerve root injection which I had in May (back on the NHS). Although this was initially awful, the pain did subside greatly and I was able to wean off tramadol and start coming off the gabapentin. After about four weeks, however, the pain came back :-(

I was then put on the list for a microdiscectomy, although they were unsure if it would actually work as the bulge was so small (it didn't feel small!). Because of the level of pain I was suffering and my complete inability to be a half decent mother or carer to my littlest boy (who is thankfully very well at present) they agreed to give it a try, but they did try and terrify me with talk of double incontinence, paralysis and death. I think it says something about how much pain I was in that I still begged for the op!

I managed to get a cancellation and had the operation almost five weeks ago. The difference in my pain levels has been incredible and I am so happy I went ahead. I feel vindicated too, as apparently the disc bulge WAS small, but the nerve it was compressing was also trapped in a groove in my vertebrae, so they had to shave out a big bit of bone too. Ha! I told them it was hurting me and now they know why! I ended up having a discectomy and lumbar decompression.

I am now weaning off gabapentin and taking very low dose cocodamol perhaps once a day. I am driving again and able to move about. I do get back ache now that I didn't have before, and my leg feels a bit achy from time to time, but it is so dramatically different.

I am sorry this is so long! I feel a bit traumatised to be honest that I had 8 months of constant intense pain now that it is wearing off. It has been a really horrible time and I feel for those of you going through it. My physio thinks my nerve has been struggling since 2006 so it will take some time to recover.

My biggest tip for anyone new to this back pain business is to make a fuss! I was so British and polite and should have rocked up to A&E whenever the pain was so severe that I was crying on the floor unable to move instead of just tolerating it all and waiting for my next appointment.

PavlovtheCat · 26/10/2013 16:00

Oh I dislike that. Everyone just carries on with their life and no thought is paid to the slowness of us back sufferers. Sometimes I ask a member of staff to go and get me the milk as I just don't as ant to walk to the other end of the store slowly while people barge past me on the slow days, or push the trolley into someone a million times as I can't quite control it.

Here have a bit of chocolate cake that I made. Please note that mine looks nothing like that photo, thanks to my DH breaking one of my halves into lots of smaller pieces and ruined it. Thanks DH (he didn't do it on purpose, he was trying to 'help' and failed badly). It appears to taste lovely though. Possibly I tasted too much of it though...

Back keeps popping. Agony after making cake as I sat on kitchen chair and then went to stand up. I screamed as my back went, and tears rolled down my face, not crying but it made my eyes water! It's now very painful, but manageable having used hot water bottle straight away (can't find my wheat belt, kids been playing I suspect).

Oh, and good news, my new hours are approved!!!!! Now work 8:30am out 1:30pm, with flexibility on my start and finish times to allow for changing pain levels, and allowing me to leave early if I have a bad day pain wise and make those hours up on one of my other days if my workload allows. So basically, I as long as I work roughly 5 hours a day, work roughly the times agreed, and keep my hours at 25 for the week, I can have flexibility to manage my cases and my hours to reflect my pain levels (I can come in at 10:30 if morning is bad that day, and either work til 3:30pm, or do those additional hours on another day). It works as I manage my own cases anyway, so I won't be leaving work for others to do if I leave early.

It's going to make a huge difference I am sure. I start this week coming, but already had Monday and Friday booked as annual leave, so not due in til Tuesday and will do my first 5 hours see how it goes. I feel much better about work now as I can a way of managing it. If it doesn't work, we will review it, but it's a start. Then, if I have god reduce my hours, I know I have done everything I can possibly do to keep them at this level.

PavlovtheCat · 26/10/2013 16:10

X-posted tabitha Yey! I mascot glad your surgery has been successful! You are so so right about making a fuss, I didn't make a fuss for too long and only started todo so I with the help of lovely mums ethers who assured me I wa not just making a fuss. I still didn't go to A&E at any point and looking back at the levels of pain I was in at times I have no idea how I didn't go. I was talking to someone the other day about and said if my pain levels increased to that level straight away, or if I saw someone in that level of pain I would be going straight to hospital presuming something serious was wrong, but I think I got desensitised to the level of pain I was in and as it gradually increased over days, I always doubted that the pain was that bad, although I knew it was! I guess I was afraid of not being believed and being told nothing was really wrong! Not that it wanted it to be wrong, but worried that it was all in my head or something. Even now I worry that what I am feeling is not real, but me making a big old fuss about something minor.

How are you feeling now? I hope you are not doing too much, although I know that's almost impossible with a little one. I am so pleased to hear he is doing ok! That must be such a weight off your mind, at least gives you a little bit of time to get your family strength back up. I hope that continues.

Matildathecat · 26/10/2013 17:57

Hey Girls, and hi tabitha,

Well, lots of things going on for everyone. tabitha, your story is horrific yet sadly so common. The NHS really does not offer good care for backs yet so many millions of working days are lost and so much misery and medication. Why the hell aren't there multi disciplinary back care clinics that offer the full range of treatments. It's ludicrous. All this endless waiting for appointments. My next one for a lidocaine infusion is in December and more injections end January. Lucky I'm not working and no longer have to explain that to my manager. It's interesting how many of us have at least partially gone the private route. I'm delighted your son is better. Is that likely to remain so? Do hope so.

pavlov, cake looks like a danger zone from here! Lucky for you that you lost all that weight and need feeding up Wink. I am so delighted you've got your working hours sorted and so quickly. Of course it makes total sense. If you are ever able to lose the Wednesdays it would be perfect. Thanks for your openness re your DH. It's so hard. Mine has been sooo fantastic, yet I long for him to just 'get it'. As you say, he has tunnel vision and is unable to see items of clothing etc on the floor. If I groan, he still asks me what's wrong...

My back is very unhappy today but have managed my usual outing to town to buy a few bits. I have a very special friend who takes me, carries my bags and makes me laugh. What more could a girl ask for? A lovely coffee also had and managed to nab the only sofa!

OYWW, totally sympathise re horrid shopping trip. Hope you feel better and enjoy a slice of pavlov's cake.

Enjoy the weekend everyone. As the specialist this week said to me 'Keep your chin up'.

OP posts:
hollyisalovelyname · 29/10/2013 08:56

Matilda the link didn't work re the shoes you recommended. More information please- brand name etc

PavlovtheCat · 29/10/2013 14:22

I would expect Holly they are Fly London boots ;) as we are fans here, well two of us at least!

I am back at work today. On my changed hours and it was hard. I am so glad I changed. But. The stinging and pain in my butt, legs and feet is almost unbearable, when standing or sitting, and walking is very painful. I stood for a good half hour, before braving sitting. My back gives way as I go to sit down, and as I get up and, as I sneeze! I have to brace myself sneezing, and cannot be stood up, or I end up on the floor! Literally! It happened in the supermarket yesterday. Very embarrassing. My boss is being surprisingly nice, asking if I was ok, if my desk needed assessing as I was standing, did I need something to raise my mouse up etc? Even made sine jokes. He has been off for a while on honeymoon following his wedding so guess married life is good for him Wink

But, good news! My boots arrived!! They awesome, very comfy and means I can actually walk, albeit slowly and painfully.

I am fed up with sympathy though, and explaining to people, and it dominating my life. Sick of it. I can just feel the eyes on me at work, watching me do everything so slowly. I think this is as bad as the pain. Even my clients are asking what is wrong, or how I am if they already know. That's lovely but, I don't want everyone to know I am not always fully able to do stuff. Why won't this just be fixed now? I have had surgery, I have tried to rehabilitate, I have done mostly everything I should (maybe tried too hard) so this should be getting Better not Worse again. Sorry, that was a proper pity party wasn't it?

Matildathecat · 29/10/2013 14:30

Sorry, no idea what I did wrong but not very techy.

Office website, search Fly London. I bought :

Yind Wedge Calf Boot and

Yama Wedge Ankle Boot. Both in black.

Also from John Lewis:

1 x Unisa Fitzu Flatform Ankle Boots, Black, 5
Product code :14394502
£130.00

All sooper dooper comfy.

OP posts:
ilovethewinter · 29/10/2013 14:56

Hi,I have a condition called ankylosing spondylitis,which means I suffer from chronic back pain SIJ pain,rib pain( and many other pains) everyday.It takes me 2 hrs approx. to get unstiffened every morning),periods of inactivity make the pain so much worse and I become stiff.I see the pain management team and have a great consultant,although GP is rubbish in my opinion!
I take up too 8 codeine phosphate tablets,8 paracetomal,neurofen and special tablets for my condition every day.I work 4 to 5 days a week,8 hrs a day,through the pain and through the pain killers!(I need to work to pay for the tablets!!)because exercise is one of the best remedies for my condition,my joints are gradually becoming fused,I go to the gym 3 times a week and run most days.The hardest thing to deal with is the emotional/mental side of things-people assume theris nothing wrong with you cos I look fit and healthy,size 6-8 and go to the gym etc and am usually smiling( although its sometimes an act,to keep cheerful).I have though been waiting 8 months to see a psychologist to help me deal with and live with this condition so hopefully it will be soon

PavlovtheCat · 29/10/2013 15:04

ilovewinter love your name, I do too!

I have heard of ankolysing spongylisis, is that a form of arthritis? Go you working through it! I am in awe of you running. I so want to run again but am afraid. I completely get what you mean, if you are living your life, working, exercising etc, there can't be anything serious wrong can there? Hmm

Matildathecat · 29/10/2013 15:45

Hi winter, you sound like a tough cookie. I'm having trouble getting through the day at all. Did manage to swim, though. Are you in the uk? If so, I hope you have a prescription prepayment cert? £104 for the year.

I'm trying to find the physical and mental strength to fill in my Ill Health Retirement forms. Seems such an effort when I know I will be forced to go through some farcical assessment process then rejected.

I called the ESA helpline yesterday to find out what was going on. I stopped getting the year long contribution based ESA in August. Apparently, my name was added to some waiting list for a medical in MAY!!! I've never heard a thing. There is no way of finding out anything. It's lucky my husband keeps me fedSad.

Bloody, bloody beaurocracy.

Right, pity fest over. Will now do forms and ironing.

OP posts:
Perihelion · 29/10/2013 18:01

Fucking hell, the private route is a bit weird.....Saw neurosurgon today. ( went a day late and missed my last appointment Blush ). Talked for about 1/2 hour and then he asked if I wanted my MRI scan done today......er no, I have to check that insurance will pay first. So quick! Am a bit freaked as he was suggesting that I may need an op. Mind you don't know why I'm suprised, he's a surgon.

PavlovtheCat · 29/10/2013 18:10

peri wow that's called 'efficient' Grin if you didn't have the MRI today will you still be able to have it done quickly? I presume so as it's private.

You reminded me - another good thing - I got my neuro followup for monday, after my GP kicked their ass!