More Terrible Back Stories

[Matildathecat]

This is the support thread for all sufferers of back pain. Acute, chronic, agony or niggles, we are strictly non competitive. All newcomers very welcome. (Though be warned, the language can be a little 'ripe' ).

Here are our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

So come and join us for moans, advice, downright rants or just a laugh.

It's an open kayak (sea surf kayak) so there is no restriction holding my legs together, that's a good point. I might have to buy some leg straps for it. I did have a back support for it, it's gone rusty around the clips so i need a new one. I will get a new one. I won't go out kayaking into the surf, I think that'll be pushing too far (although that is so much fun). I am also going to bodyboard with DD. That is probably going to be pushing it too far! I only managed once last year, but wow it was fabulous to be out on the water. These are my hobbies. I can't give them up, I miss them so much. And the sun is shining. Once upon a time I would be zipping on my winter wetsuit, pulling my wetsuit boots on, jumping in the car and heading into the water for a swim. now, the process of getting the wetsuit on and off may well put my back out!

and, the reason there is so much conflicting advice, is because there is no knowing I guess. I guess it's up to us how much we push ourselves, there is no actual answer to what we are prepared to do, we have to figure that out, what can we cope with? what makes it all so bad we can't function, what can we bare, what are we prepared to sacrifice? I know for example I am not prepared to sacrifice a few days that I might lose if I wear high heels, but I am prepared to sacrifice a few days for an hour on the water. Am I prepared to potentially sacrifice my future mobility for a summer on the water? That's a hard question and I can only answer that I think by getting out there and trying it.

Hmm an hour on the water. Even half an hour would be fabulous. As for a summer on the water. Build it up over time? (Don't cry, hate OR listen to me).

Pavlov, thanks for the reply I was in hospital and the Dr asked why my little finger on my left hand had no feeling he felt the back of my neck and said it was very swollen, stiff and sore. He suggested an MRI via my GP. I take ibuprofen from the chemist. I can't take anything stronger as they make me very sick and I'm allergic to codeine/tramdol. I'm going to the GP as soon as I can get an appointment. The hot water bottle works but with a new round of redundancies I don't think I will survive, making my situation even worse.

Putting a wetsuit on. Boy! I can't even get dresses or support tops off over my head at the moment. have actually had a few near-embarrassing panic moments in changing rooms opted each time for agony over humiliation. Lol

Saying that, a while ago now, I used to be into scuba diving. REALLY into it - geek style (rather Asperges, now I come to think of it). I used to have an underwater fish chart (I can HEAR you laughing - and I don't care). I had an underwater sketch pad and pencil and would write down all sitings (train-spotter style). Then, once out, I'd pour over books on ... fish, to locate the exact ones I'd spotted. I'd read about their characteristics, habitat, etc. (Yes - fish do have characteristics: territorial, loners, cleaners, found in only the cleanest waters, etc.).
Anyway, (if you've managed to get this far) I had glandular fever about 9 years ago. I had it BADLY. I was also pretty old in GF terms. About 32. I could to walk properly for about 6 months. Couldn't stay awake at the cinema for about a year and a half.
But went diving.
And
Someone put my wetsuit on FOR me. Literally pulled its shoulders up to lift it and let me shake down into it. They took it off, too. I was just too weak.
Had a bloody brilliant time. But was exhausted afterwards. Was worth it.
Only did about one dive as doc said I wasn't really up to it/ shouldn't be doing it so soon (risk of infection too). So snorkelled and found that I PREFER FREE DIVING (snorkelling around and diving under without oxygen tanks etc.). Less hassle all round. Red Sea. Aaaaaah. Those were the days!

There are no answers. We are all different and the variables too huge and numerous. but we all have certain things that equate to quality of life. Pavlov wants to get in the sea, I want to travel, Goodness wants to be drug free and get out there...ultimately we have to chose, experiment and, unfortunately, compromise. But giving up isn't on the list of options.

chicken, hi honey! sorry you feel so low and sore. Necks are bastards. Heat, yes. Tell us what you have tried and we can help with suggestions or just sympathy if you don't want advice. Sometimes advice is too much.

17, Before Back, I was never a crier, really, maybe once a year a meagre tear or two. Then Bham! I never bloody stopped. I cried at home, at the GP, at hospital...anywhere really. One infamous episode I got forgotten at the physio and 'missed' my appt though had been waiting an hour. I didn't just weep, I stood there and SOBBED. Snot, hiccups the whole lot. Was quickly ushered away for tea and a miraculously found physio. It's just so fucking painful, frustrating and emotional. And I had and have brilliant support. I'm sending you a big bucket of sympathy and love. And it's freezing out so wrap up.

maizie there's a little brow bar at the bottom of the Bentalls Centre. I was watching yesterday. Looked good. £15 for tread, wax and tint. Tint is good, I'm a late convert, it adds definition to your face.

You see, we are a multi purpose thread! I'm trying to get up. Must get up. Get up, Matilda you lazy piece of work!

Another similarity, I love swimming, diving down and...don't laugh, holding my breath under water. Tried scuba but had a bad experience. Snorkelling oh yes! Last summer did swimming with seals in Scilly, it was awesome. Just fab.

Oh, yes I was meant to be getting up. Derailed again!

I agree with Matilda on crying SINCE (not really able to before back stuff), and giving up dreamy things not being an option

chicken ok, add paracetamol to that. Amazingly, and surprisingly to a lot of people, it's a fab drug. In particular when used with anti-inflammatories such as ibuprofen. Use them at their maximum level every single day as they build in your system for longer term effect. However, re ibuprofen I would suggest that you speak to your GP about one of the prescription only anti-inflammatories such as napraxen. You also need to be taking a stomach acid reducer as anti-inflammatory use over time can damage your stomach if you don't take one. Your GP will be able to prescribe that for you along with ibuprofen or equivalent, and paracetamol. Are you eligible for free prescriptions? If you are not automatically eligible, take a look at the low income application and see if you can apply for partial or full help.

Is the GP referring you for an MRI? What is his view on it? Sometime they can fob you off at first, try giving you meds or telling you to wait it out. You can ask for referral to physiotherapist too, or/and to an back specialist osteopath for some guidance on how to manage the nerve being trapped.

chickens re work. Do they know about your neck pain? How long has it been a problem? Are you struggling to do day to day activities like getting dressed? If so, ask for an OH referral, or speak to your GP. If you have difficulties with day to day tasks that a medical professional feels might well last beyond 12 months, it will be classed as a disability, whether or not you recover from it in the future. This means that they will not be able to use any absences or issues with work related to this when they select for redundancies. I know it is not that simple, that they have their 'ways' but it's always good to arm yourself with as much defence against being treated unfairly as possible.

matilda DD loves holding her breath under water. She gets 5 mins free play after diving lessons and she tends to use that time, not practicing her diving, but seeing which out of her and her friends can get to the bottom of the 5m pool first! Luckily, she has not made it right to the bottom as she is only a little girl and it's very far down!

might yep, 1 hour is probably not going to happen for a long time. More like 10 mins. But, I have visions of paddling gently out to near the Mew Stone at Wembury and then just floating there while I lay back for a while, looking on at the tiny dots on the beach. That's doable right?! 10 mins padding, 10 mins laying there relaxing recovering 10 mins back.

Talking of tears
I'm in floods
Sitting in front of car
Smooth FM
Late (as has always been) to take my dd to a party and then bananas in pyjamas at theatre, home to rest n out to park w friends (hope they don't ask what's been the matter as I'll. .. cry!).
And I'm crying as I'm so grateful and relieved. It's like it was all a terrible terrible terrible nightmare. And I'm doing normal things. It's so surreal. And I'm still - crying.

Oh, and I'm more of an LBC (serious) girl. Well, used to be.
Car hasn't been driven by me much lately.
Mesh in my seat.. Here I go

In fact the breath holding is an example of one of my modified activities. I used to be a really keen swimmer BB(before back), I have kept it up to some degree. I used to do 5000m front crawl a week. Not sure why, but did! Now it's far, far less but I've worked out that kicking my legs = nerve irritation so use a float between my legs. The only way I can get any cardio exercise is to swim each length hard and in one breath. It kind of works. So, I get to swim, get some cardio yet don't wreck my week by causing a flare and get to flop in the jacuzzi .

I am also a bit unusual on here in that I have been told by two very senior neurosurgeons that I will not get better. By god that was and is hard, but it has managed my expectations. I'm not hoping for some miracle day when it has gone. Bleak but real.

chicken it all sounds bloody hard! have you got any RL support? Can you give indications re where you are or what kind of job you have? Feel free to ignore. pavlov speaks good sense! she knows her drugs. Ask for urgent GP, urgent MRI and cry. Say your job is at risk etc. if you have allergies and your GP only offers paracetamol and ibuprofen ask for a referral to the Pain Clinic. There are other options. Suffering isn't really one of them IMO.

Matilda I always wrap up warm, can't stand it when the cold gets to my back, can put me out of action for days

My mum knitted me a back warmer for Christmas and its fantastic, helps stop gaping around the waist which as I'm tall can be a problem

A knitted back warmer? I want one!

I an now dragging my self off the sofa to give the poor dog a little walk. My usual dog walking friends have selfishly gone on holiday . He usually gets two hours with them and a slow half hour with me joining them for a stroll, coffee and chats. That's another of my modified activities.

Apparently I'm a good problem solver (says my psychologist ). Still have a lots of screwy thoughts though.

mightbe you're only just back 'out in public' really, I think? Bound to feel vulnerable and emotional. Have a couple of one liners ready so you don't get overwhelmed by the rubber neckers. Or, indeed by kind, concerned people who couldn't be arsed to keep in contact .

None of my one liners will work. Either beget questions re what was WRING with my back (don't wanna go there) or comments such as 'oh I get back ache, had a cyst (vs sarcoma in sacrum). They can't win with me. And... I look NORMAL. in fact, with spray tan (I covered scar), better than ever. Ironically.
But I'm angry. With all if those who texted UK say they'd pop over and ,almost 8 weeks lader, haven't since texted. Just responded to one regarding a party invitation. I've not been at school since January and her response was 'great'. Hmmm maybe people just don't know. I don't want to know them now, though.

matilda kind of like this

Thanks for all the info. I'm still a bit shocked so not able to take in much ATM. But will deal with it as best I can. I dnt have any help in the real world so have to struggle on. Just feel low. X

I look normal, too. Maybe better than normal because I get time for hair, nails, outfit planning etc. and talking about our private lives is, well, private.

Would the 'I'm still rather fragile but thanks for asking?' Sort of reply work? Anyway hope you survive your busy day. Truth is, nobody else is as interested as they should or could be. I've often met with people who know friends of mine really well and yet they haven't known.

maizie, meant to say well done for mentioning the jollies in the bedroom. Good for you! I'm guessing that even for those of us in relationships it's yet another casualty of The Back. . Something to aim for though! My nerve damage has somewhat put a dampened on things but for our marriage it's important so I haven't shut up shop

Just back from a blustery walk. It is cheering. I was practising my Zac speech. And what to wear? Smart serious? Smart casual? Or Poor as a church mouse and pathetic? ( actually not willing to do that one but just asking for opinions). May take Orange Bag as armour. If I take Drugs I might talk nonsense and will def talk too much. If I don't I will be in agony. Oh, decisions, decisions. Quite excited, though. Never been to Houses of parliament.

chickens, cross posted.

Here's a hug ((((()))))

I know how it is when it's all too much. You be gentle with yourself. Wish I could help you in RL.x

Thanks

Hi chickens sorry to hear about your neck. Another thing is to get referred for physio. This might help a bit.