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.

Just checking in briefly coz off to bed. had a fab visit with the lovely matilda, DD was eyeing up the orange bag! she loves handbags already at the tender age of 20 mnths . unfortunately the weather didnt really cooperate but nevermind, that's uk!
ah pavlov, you had a wetsuit, I once swam in UK sea in March with just a cossie on, at Little Hampton, lovely beach. Best fish and chips there ever.
so sorry you are in so much pain pav, sounds horrendous, hope it gets better soon.
Had a decent shop in Kingston with my mum, dd slept through whole thing. Had a mocha, took some new look clothes back no good, tried on uniqlu ultra light down jackets and then v brief look in M&S, mum bought me a scarf, and she got a summer type jacket. Not my kind of thing but v nice, very her, interesting pattern linen in blue and white. The scarf is cream with grey butterflies all over, a bit like pencil drawing of them style. Quite understated, I have brightly coloured scarfes so this is a good one to be different.
Fizzle, read back just a wee bit i posted about a new series called Blacklist, sounds like you'd like it.
hiya to the newbie, pull up a hottie, cram a piece of cake and join the gang, we're all half loopy on here but hopefully supportive too and try to be helpful
hope you are all sleeping well.
Going back home tomrrow some time in the am, got to feed cat and do boring things like pick up prescriptio i hope they have filled
trying to get in touch with the hip clinic today but has been harder to do than thought- tried all 3 no.s given and nobody answering phone, have given details to someone on the ward, they should ring me tomorrow hopefully
sweet dreams zzzzzzzzzz

maizie hope this week has been ok without DH, have you managed ok at your mums? glad you enjoyed the meet up!

Fizz, Without giving too much away, yes. I think your DH will probably like Orange - perhaps fr additiinal/ different reasons to you. It'll quench your thirst for prison psychology, too.

17, I'd contact admissions and tell them, anonymously, of your concerns.

Ask them specifically all things that concern you?

Pavlov, I am so jealous that you're watching OITNB. I was so unhappy to find that it consisted of a measly ONE episode!
Lol
Can't wait until Episode 2 in June!
What a job!!! Wow! Such responsibility. Can't help but wonder whether OITNB is true in its inmate relationship stuff.

Your pain n meds must make big decisions v difficult. Gosh.

I took Robaxin for the second night. V early days. Shoulders seem looser but by contrast, hip (particularly left) feels sooooo achey-sicky. It's just where you'd rest your hand if placing it on your waist just above the pelvic bone/ waist. The detail is because I'm desperate to know wtf it is. Sick of being told about pain killers without being told the problem or remedy. It's fucked up. (Been watching too much b&b amd OITNB, clearly). In fact, combo of my health terror (let's b honest - among good friends now: it was more 'terror' than 'scare') and watching bb back to back has led me to b a swearing trooper.

frozen, that sounds like your sacro iliac joint. A lot of nerves run through there. If you had sacral surgery maybe some of the nerves in there are still affected? I did benefit from a SIJ injection recently ( I know you don't want to hear that!). Maybe there isn't a simple answer to what exactly is causing each pain. Although my leg pain improved briefly I then developed a nasty pain on the other side. No, I've got no idea, either. Thing is, in very complex situations like yours it might just not be possible to 'find out what is causing it and deal with it'. Irritable, damaged nerves are not that straightforward which is why pain specialists focus on dealing with the pain rather than the cause.

When I had my second surgery I was told that even if it was successful it could take up to nine months for the compressed nerves to 'fully' recover. That is, recover as fully as they ever would. Not fully as in fully. In fact it wasn't successful.

Sorry, not trying to crush your spirits which have been magnificently 'can do', rather encouraging you not to waste energy on searching for the unfindable. Hope the massage and counselling helped clear your head a little. It's a pity we can't have them every day.

17, I second calling admissions anonymously but also go for it, it's a great career and highly flexible. These parts people are queuing up to pay for private SALT due to dire nhs provision. We have an old friend with your kind of MS. He has very sadly spent his life not doing things because of it. No kids, little travel (despite plenty of money), virtually no social life and so on. In fact and I know it's easy for me to say, he's not been that bad. Nearly thirty years after diagnosis he still walks with sticks and can do most things really. Just chosen this rather sad empty life. You sound the total opposite which is a fabulous thing.

Have a lovely day everyone including absent friends.x

Matilda, thx for managing my expectations (meant honestly - not being sarcastic)

Off topic: Anyone else feel uncomfortable about Workd AutismDay falling on April Fools' Day? Has to be said!

Matilda

There are very few things I won't do
I know that standing for a long time hurts -so I find things to lean on at every opportunity, don't arrive early for things, have moved to the seats instead of standing at rugby, that sort of thing

I went camping with guides this weekend and got them to do all the bending and lifting while I declared myself in charge of the campfire lol

But this is a 3 year commitment and I don't know how I'm going to be over time -I get better now in between but realistically I won't always

It's a massive financial commitment and I do worry about the future

But then I suppose we all do

Strike day. I have been to watch DD in a mini performance at school, had coffee by the sea. I have had to use my crutch as I can't put huge weight on my right leg/bend my legs easily as when I do back pops and pain is searing down my right leg. Can't sit, can't stand, can't walk without aid. I am now back in bed. I should be on the picket line. People are moaning on FB page related to it how lame it is that people are not out on picket line. Well, fuck em, I am not at work, and I am losing pay, so they can have that as me being pretty supportive under the circumstances. I am not even going to justify myself to them, I am fed up of having to explain my reasons for things.

I am going to see my Gp tomorrow but not sure what to say to him. I have the pain clinic in 15 days and I am going to talk to them about trying me on nortryptline 1mg syrup and titrate slowly upward from there (suggested by the hydrotherapist). If I can get this pain down a little in my legs maybe I can find a balance of low dose of nortriptyline, like 5mg, or even 6 or 7mg that does not batter me but helps with the pain enough to manage. I don't even expect no pain any more, but more manageable levels might be possible. Don't know if I should ask my GP for this or wait for pain clinic.

15 days is a long time to cope with the level of pain you have at the moment -I would ask

My gp is very good with pain meds, if I ask I generally get (but I'm not very good at asking)

Can't see why that would be a problem pavlov, unless of course the syrup is more expensive. it's got to be worth a try, surely?

frozen, was thinking about your pain dilemmas this morning. Am thinking that maybe you are in the 'acute pain' mindset which is pretty much totally different from chronic pain. Have a read up (if you can bear to) because the management both physically and pharmaceutically is different.

17, can you get a student loan? If so then if you were to deteriorate ( please not), and couldn't work then you wouldn't be repaying the loan anyway would you? Obviously that's not what you would be hoping for but it reduces the financial risk. And are there bursaries etc to claim?

17 I have been thinking about this and I was thinking that you might easily get to a stage where it is hard to hide your MS but you could work if you were in a supportive job. It would be a good idea to plan for this ahead, by actively looking for a supportive job, and this might be easier with the help of the advisors available at the uni.

Oh definitely more expensive as a syrup according to my nurse friend! But if it's available and it can work I shall try it! If I ask my gp then I can talk to pain clinic about the injections; if I give pain clinic options they might refuse the injection until I try the lower dose!

I agree with Matilda about finding a supportive employer who knows from the outset 17 I can't help feeling that might pay off in the long run, but definitely think you should not have 'don't do it' as an option. You may well regret that more than relying on uni to support you in finding good employers. Sounds like such a good opportunity.

17, I love a good lean, me. Bum propping tables are a must

Frozen bum leaning is definitely an art form lol

I can get a loan but its the pressures of the house etc, I've worked it out, I can do it but it will be tight and will leave me with no savings at the end

I get that anything in life is a gamble

My other option is to go back to work in my old field but I know that isn't compatible with good health -I finished in November and I've only had 1 flair up since that was under control within a fortnight
Previously I would have struggled on at work without seeing the MS team and not started back on the ami so quickly (which I'm now staying on) and getting a steroid injection

Frozen bum lean, wonky hand sit and lean fowards over a surface with bum sticking out. All jolly comfy. Oh, and the one legged stork stand.

fizzle, if you are unable to work due to your health you might qualify for contribution based ESA. I got that for a year.

pavlov, I'd be going for the unequivocal approach at the pain clinic. Injections have previously helped and you need them now. In fact you have needed them for many months.

I, too have become a hard nosed, sweaty mouthed bitch since the onset of all this plus the (bad) influence of BB. We'll all be swapping recipes on 'cooking' next!

Almost scared to say this bit actually had quite a good day. Another one tomorrow, pleeeease?

17, also chat to maizie, she's a full time student with disabilities and I believe uni have been very accommodating.

Matilda, glad to hear that u had a good day. Take it easy n fingers crossed for another!!!

Thanks very much Matilda - I will look into that.

Do any of you wear a back brace or tried one? A friend has recommended I try one out for when I have to start carrying my daughter again (once the helper leaves). what do you think?

x

I did have a cheapy Velcro thing which I liked but I lost it. Might replace, in fact. Well, it might give you a bit of support but think you might need a bit more than that.

Have you thought of contacting HomeStart? They might be able to help out. Also colleges doing nursery nurses might have students looking for experience. I would also be calling your HV in and asking for any support she can offer. Don't underplay exactly how extremely sick you have been.

i am right now displaying a tectbook "leaning over a surface with bum sticking out", thank you for your eloquence matilda

fizzle yes home start can help, so can children's centres sometimes, they have outreach workers to help with this kind of thing.

matilda hope 'it' reasonable day lasts. Leaning over counters with bum sticking out is normal for me too! as it perching on the edge of tables instead of sitting.

i am in so much pain i don't know what to do with myself. don't want more meds as they will just wire me. Last night i woke with pain, not aching, but proper pain, usually it's lingering achey pain or nerve twinges, this time it hurt. I am going to have to take something more but just can't face getting up, getting more water, sorting and taking the meds, not sleeping.

My own fault. DD and DS have had fabulous reports/work folders and parents meetings. Not just academia, but their characters are shining through, I am so proud of them, they are lovely natured happy children and everyone at their school/pre school adores them. So, after doing too much today, knowing I was going to be bad, we took them out to Bella Italia for dinner, they picked. Wow. So, I can't even sit out to eat a meal. I am on fire with pain, I hurt so much. But, they had a great time, well behaved and now in bed asleep without a fuss so feel it was worth it. But I waited for it to be over and that makes me sad. I didn't want wine, or pudding, or coffee. Normally i like to have something sweet, or sip wine/coffee at the end of a meal, esp now the children can sit for longer and colour pictures etc. But nope, not any more.

I apologise for my moaning. So fucking low.

I was going to say I'm not matilda about the student with disabilities, but you are right I suppose I am. It just seems like most other students with d's have much more to deal with, not dyslexic, pretty mobile, just hurt a bit. Funny you mention as i have made a n appt to see the disability team when i go back - just seemed sensible since it had started to afect my studies, needed extensions on home essays and would like to get a comfier chair organised- I asked the guy in student centre and he said he had one due to back probs and if they could, should do for the students too- seems logical. I will let you know all the info from that 17 and please do post anything I could ask that you want to know about this type of situation. I really think you should follow your heart and go for it- by worrying about a future you have no way of knowing the particulars of how does that help you? It sounds like a job that is more do do with what you know- less physical, that is what i try to end up with my route as well so they will be hiring you more for your mind than body. The attitude I have encountered so far at uni has been encouraging all people to have these opportunities and any extra needs should be supported. They have been wonderful so far and just keeping them informed as and when seems to be key. Where are you considering going to re uni?
I hope I will get a good job from this one day in future years but i can honestly say if i never did the time would not have been wasted and I have started growing already from this path of learning about something that intersts me and i am passionate about.
I have managed to get a free pass into a conference, I love the topic but was worried to buy a whole ticket because it was so ££ and i was not sure how long i'd be able to attend with LE HIP . sent an email explaining situation and offering (limited) help or to pay reduced rate and only stay for some lectures, and they sent back a lovely reply to come and not bother paying. I am now crazily excited and have to raed up some more on synaesthesia so i can understand as much as poss!! Their key note speaker is Dr Baron Cohen, big name in psych!
Better now but have had a very down day. Had to go into the doc's to get repeat of the dihydracodeine- worried overly about what was gonna be the problem about that, in the end he was fine - think he had forgotten i cant start trying the gaba until next week. asked about if they will do mri of back ever and cried a bit coz just very fed up with ongoing uncertainty, how hard it is being to get appt with consultant done and pain level post-op that seems so the same as beforehand. Feel like my life has suddenly turned a corner out of "normal" in a more significant way than before. Yes I had great sex once in the last fortnight but my pain was up a lot the next 3 days- not much of a sex life and these things affect your relationship. Always feel like i am letting the kids down when i cant do things or make judgments not to, to keep equilibrium. It was prob necessary to have a cry but now feel very sapped. and forgot to actually ask WHEN mythical mri will actually be deemed needed and take place. he had no idea when lain team will call either. but he did offer to help with the consultant appt if still not done by thurs. poor dd looked so worried that i was upset and hugged my leg and torso repeatedly. we came home after and watched 'tangled' over our dinner- no judging please.
have to go put little one to bed- hope you do have another good day matilda ; hope this godawful pain phase eases soon pav, hope all the rest of you have painfree night tonight and a good day tomorrow
oh and deff second you about the picket line pav- fuckem, people should not be so bloody quick to judge any way, they dont know about your life- really hate it when people do that btw

Sorry to type a selfie-post:
Feeling really down tonight.
Feel beaten down. Medics all seem to say take meds. So I will. I am. Now, I'll take another on top of the one given last night: robaxin & Ami
Please don't tell me not to feel down.
I just want to be fine and meds free. I don't feel any worse than I've felt for ... years. For me, this is normal - so I don't want to b on meds for life. So I'm sad to take these things long-term.
I just have to go through it. Tomorrow will hopefully be a better day. Just wish it would all go away and I could naively think I'm fine again. :(