The Back Story Continues

[Matildathecat]

This is the support thread for all sufferers of back pain. Everyone most welcome to join.

Here's our first thread

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

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.

Please post and include your story if you'd like to. No niggles too small, this is strictly non competitive!

Hi maisie welcome, sounds like you need the pain transfer device for your Dr. Its stupid to suggest you reduce your pain killers before your op. Its not like your pain is going to reduce. Unless you can be given an alternative medication of course. I know codeine is bad for you and can be addictive, but why not wait until after the op, then reduce? did you read that Pavlov has been taking nortriptaline instead of amytriptaline and I think it has less side effects, might be worth looking into.
I work in a kitchen, mostly reheating I am sorry to say and washing up. It is hard on your back. But the only advantage is not having to sit a lot. Luckily my job is only pt so that makes it much easier.

Can these drugs account for the fact that I can't retain any info I read in even HALF of ONE person's comment - let alone read a few n then reply. Actually, I never could! Haha
But whoever game the amatriptaline advice (a couple of you - and I can't spell it either) thank you! I'll leave it for now. Just don't completely trust gp is interested in anything but how much is prescribed. It's odd. Not right kinda odd. Prefer the pain team approach.
In those ways, it's easier being a l'hopital. Gd forbid I ever need to do that malarkey again! Gd forbid gd forbid

I neeeeeeed cake. Slimming world cheese cake. It's late but I want some NOW

matilda She has been paying privately for chiro and sports type massage, she has hydrotherapy, acupuncture on NHS and some physio and she has been given pregabalin. But, there is no op that is available that will help.

slimming world cheese cake? Does that count as cake?

goodness best that I don't tell you that I have just had thorntons chocolate parcles and some peppermint chocolate balls for my dinner? I found them in a bag, from Santa as stocking fillers (he bought too much to fit in the stocking) and I was not hungry, so they did the trick!

Ta Pavlov better now . You don't know how bloody lovely (and crap obviously) it is to see someone write down exactly what you are trying to say. Plus I have lost about 4 stone (I'm still not slim but I do look bloody lovely compared to how I did) but I am sick of people wanting to know my secret and being a bit jealous of me when it's because I am a bit poorly and a lot miserable and taking bloody awful medicine which kills my appetite and makes me feel sick. I have rheumatology on Tuesday and I never in my life thought I would be going to a doctors to put my case for a small dose of chemotherapy! Actually that makes me , it is all so bloody ridiculous isn't it? So anyway, to put it better, YES that is just it, and it is amazing to have people who understand to share it with.

You have made me think Matilda but in a good way and dear god I could shoot the next person who says I have a 'bad back'. My dad had a bad back last year and keeps telling me that Voltarol pain gel is the way to go. I don't think he really gets it. "We do these calculations all day, every day." That is perfect, it really is. I coach and U8's football team and that is the only reason I haven't applied for a blue badge. I plan my whole day around evening training once a week, extra drugs, coffee, no moving in the afternoon and food prepared for tea after well in advance. I love my little footballers so the pain is something I am prepared to 'take' as a pay off for the happiness they bring but if people saw me with them and then saw a blue badge they would be straight on to the bastards at the daily fail. You lot understand the equations we do to LIVE not just endure. I'm going to stop talking now, I've had a lot of extra tramadol this weekend and a glass of wine, I am getting a bit over excited and waffly . I would totally recommend paying someone to brain dump on as well, it's not free but I have taken it into the family budget as an essential because otherwise I would just go to bed and cry.

Hello as well lots of you are newish and I don't know you yet but after the sedation on Fri and extra tramadol to get through to the injections working I am a big woolly head and can't quite manage acquiring new data, give me a couple of days OK?

^^ that is in response to something about 20 mins ago but I am woolly and slow!

Actually spotting spina biffida (I can't remember how to spell it, see 'tramadol and alcohol') later in life isn't that unusual. There are a few people who don't have it badly enough for it to be an obvious problem in childhood and maybe have a slightly furrier lower back (although a lot of people just have furry lower backs too, nothing unusual in that itself). Sometimes it shows when an adult has an abdominal x-ray because of tummy pain and it turns out there is a mild abnormality of the spine which makes an awful lot of other things suddenly make sense. Not that that excuses Dr's who ignored your friends pain and didn't spot it, that's a bit crap!

losty I can see that, in low symptom cases, but honestly, my friend's symtoms of back problems, although might not have pointed to spina bifida (i can't spell it either!) has been so significant, you can see the curve of her spine, one shoulder blade is higher than the other, and she used to dance for a laugh simply by standing on one leg straight then the other, that I cannot believe they let her go for so long without investigations. i mean, yes, actually I can. I never really quite understood fully what was wrong, I thought she had her diagnosis, nothing could be done, but she had given up as she was so sick of being fobbed off (like we all have been at various points), but her issues were so clear for a medical professional to see enough to say 'shall we go do some checks on a few things?'

and, oddly, she doesn't have a furry back! She has had tummy pain in her lifetime though, it was diagnosed as endometriosis. Maybe it was not that (or just that) after all?

My mum took me at about 8 yrs old, to the doc. GP have my back lump a name and called it 'common and harmless'.
My mum took me to the British School of Osteopathy when I was 14 as I said it aches a bit (trying to get out of games, probably). They said it was 'hairs on the bone'. Hairs on the bone?!? Even at 14 years old, I questioned why it was a bit hard. They drew a pencil sketch of the hairs standing upright under the skin - making it hard. Erm (scratches chin while shaking head and looking toward ceiling).
Turns out, at 41, it was neither common, harmless or... hairs on the fucking bone. Lol-ish!

No I agree, for her it was utterly crap! I really don't think medics want to hear people properly a lot of the time. Plus as Matilda points out, everything is linked.

Seriously Goodness . That is just astonishing, well no that's just old school patronising medicine tbh. Lol-ish indeed!

Wow goodness so you have always had this lump, and it was missed before. I didn't realise it had been there so long.

right, got to go to bed. I not only have to brace myself for work, but I am properly snowed under All Day until 2pm. FFS. I am in quite a lot of pain today. How many more years til I am 70 and can retire?

goodness wow! that is shocking, so much is missed!

Goodnight Pavlov, hope you feel a bit better tomorrow, and get through work.

But it didn't really hurt. I do feel for those who've been suffering and for whom it's been missed/ misdiagnosed. Thankfully, mine was recently (and incidentally) found and kicked the hell out of here. I hope theirs is, too.

I see a gap out there. It's huge and the scariest, most miserable hole pf a place for anyone to be: knowing there's something wrong. Feeling in pain but not knowing why. Having to wait but not yet being td whether it's the Big C. Who is there to counsel these people? These people whose club I was in just 6 weeks ago?

It's true about things being missed- they only spotted my hip dysplasia because the physio took my x-ray to a friend of hers working in st thomas, the person who originally assessed it had written "normal", then they did mri and pet scan and they found it. It would probably be unfair to say they should have spotted it when i was a baby because it was slight and that was bleddy yrs ago. That is awful about your friend with spina bifida pavlov - i had no idea it could be missed. Wrt Amytryptyline (maybe we should call it Amy- cool drug slang) - the side effects wore off quickly once i had titrated up to 50, it just took a while to do it and was when i had to do some essays for uni- bad timing. I think maybe GP's are more funny about codeine, tramadol and diazapam because it's inner london boroughs, my mum suggested i ask for diazepam just for the night time to relax muscles as i have felt a slight spasm feeling if i do too much, kinda creeps up my back, ( she has a long history of major probs with her back- slipped disk, but other stuff too, so knows about meds options) and the dr said he would be struck off! Hope you all have a good night's sleep

My bum hurts.
Thought I'd share that with y'all, now that we've gotten to know each other a bit better ;)

Liking the cool drug slang (that helps to avoid the spellos)!

I've been lazy as hell today. Left room only for brief visits to my friend Fridge. Did venture down when invited by DCs (6 and 3) to play Duck, Duck, Goose. I still don't know which I looked more like as I attempted a hysterical-looking 'run'. Duck or goose? Lol

The problem is we have educated ourselves about drugs, but sometimes it doesn't look too good to be asking for strong drugs by name (or even worse nickname!). But don't give up if you are still in pain, go back and pester, try a different doctor, ask to be referred to a pain clinic, its not fair for you to struggle on in pain just because some people abuse these drugs. Also explain how it is affecting you and important things you are not able to do rather than talk about pain only.

I had to be really pushed to take tramadol (thank you new young GP and Pavlov) because I thought it would make me a scary drug addict. I'm a bit scared of trying to stop them one day but as that doesn't look to be happening any time soon, I won't think about it.

My bum hurts too Goodness, well my right bum anyway. What are you up to today, I've got lost in your progress a bit, are you up and about with the help of masses of drugs or are you mostly supine with a bit of hard core physio when you can manage?

I'm going to order a Tesco delivery, try and do a bit of homework (doing an OU degree in IT and Maths, just SO easy on tramadol ) they ship in another top up pain relief and lie on the sofa. I'm supposed to be driving to the hospital and back tomorrow for rhumatology and I'm not sure how that is going to work right now!

Lost, today I'm off to see my Nunny Doctor (combo of tumour near nunny nerves & childbirth tearing them).
This time is set to be rather exciting.
I'm taking The Machine.
She recommend I buy it. So I have. Don't know which I will find more strange. Her fingers or my new, erm, metal proves.

I am quite mobile BUT get as excited as a toddler at a tea party just to be out n about - then come home and literally feel like a lead weight, fall asleep on bed and can not move for rest of the day with exhaustion. I'm a brave chick. I don't even take my OxyNorm with for the ride.

I'm getting a bit 'relaxed'. Not taking meds on the dot of the hour (or next hour). Didn't do ANY Physio yesterday.
Think there's a ickle bit of depression lurking. Probably always has been.