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!

From my bone scan one of the only areas of my body with no active disease are my hips but I do get a lot of pain there referred from my back/SI joints, kind of a 'deep' pain IYSWIM? I have kind off 'nettle rash' or stinging pain in my thigh above my knee, is that like nerve pain?

I love goodness still trying to be coy over possibly doing a little wee when she sneezes, it's all right sweetheart, you are one of us now .

Half term here with three mad active boys and two mad dogs (whippets so mostly asleep though, thank goodness!) going to take them all to the beach for a run now, in the hope that it calms some of them down at least!

Prescriptions free here too, can't imagine paying for all the medicines, nightmare.

Oh, I love the beach with dogs. Can I come, please?

Lost, sometimes not so little.
(Hangs head in shame wondering why OH WHY I feel the need to 'fess up with quite so much honesty n detail).

losty love that 'nettle rash' description, that the newer pain I have, stinging pain, never known how to explain it, Right down both legs, into feet, through back into bum as well right down. I also get the deep hard pain in my hips and had that very badly when my disc was on my nerve, it made it impossible for me to move left leg, I get it now in the other leg/hip but nowhere near as bad. Doctor and physio said it was nerve pain, and it disappeared immediately post op, although has returned the other side, is I guess it is nerve pain. The hip takes a lot of transferred pain I think.

Just a sneaky post as off to get children then do diving lessons. Tramadol keep me going and apart from slight hot flush and a bit of Cheshire Cat I managed to not looked high as a kite

lost yes! weird random patch like a burn on my right outer thigh. Very different to my other pains. I think the nerves supplying the skin are different to the deep ones. Something to do with dermatomes?? Low back pain as if hit by a cricket bat, then left buttock and leg pain like having a nail banged into my butt. If someone asks about my pain (not that often !) I find using that type of description makes it more real for them.

goodness a few weeks on your Magic Machine and you'll be Olympic standard in the pelvic floor department. Luckily for me it's one problem I've not yet developed other than when laughing like a hyena with a very full bladder which I don't think counts

Matilda, I'll not be telling you my hilarious jokes then - as if I've ever made anyone laugh intentionally

Lol

Just send me to the loo first .

Wow, I have trouble keeping up with you lot.
Hello to everyone old and new, hope it's been a lovely and sunny day where you are. I actually had my patio windows open as the log burners been lit and the rooms south facing so it was around 500 degrees!

On the prescription front I am lucky (ha) to have epilepsy so get everything free. Otherwise I would be paying for 9 items a time. The thing I think is wrong is how they charge twice for the same medicine eg I need 1250mg of my epilepsy meds, but they don't come in this size so I'd have to pay for a 1000mg and a 250mg of the same thing. I think one payment should cover the whole item iykwim.

It's funny the way we end up trying to describe pain isn't it? I shall have to write some of your appropriate descriptions down for my appointment. I had a letter today saying it's been bought forward to the 10th April, which is good, but also a pain as my sister had booked a days holiday to come with me before. I dread going to this Pain Clinic appointment as I know I'm not great at describing how I feel and tend to try and be positive. I also know they'll have the dreaded survey from last time and worry that they'll compare old and new and decide I'm no worse. It's hard to put this across, but stay with me.. It's just that what I saw as a seven on the pain scale a few years ago might only be a 3 or 4 now as I wasn't really aware of how bad pain could get then and I'm much more used to continual pain now so tend not too really rate it as much. I don't want to lay it on thick, but I also don't want to be dismissed again. This is the same place I went last time that discharged me with double meds and the advice that "The pain will get worse, but don't bother to come back unless it gets different." What if I have a scan and nothings changed? Or they won't even do another scan? Arghhh!

cowmop if they have said pain needs to be worse before you should go back, then tell them it is worse. The chances are, it has, but your tolerance to chronic pain has increased and you are more used to constant pain. It reminds me of the other day when the fish tank pump at work was buzzing, quite loudly. Neither me or a colleague even noticed it was there, until it was turned off then we were like 'aaah! that's nice and quiet!' and that reminds me of pain. It's there, all the time and you get on with it as best you can and so then your perception of it becomes that you question the level of it. Each time I have been, they have given my questionnaire the most cursory of glances, I am pretty sure they won't have kept it from last time. It's almost like some kind of game to them (not individuals but as a policy) isn't it, see who gets the 'right' scores to get help (and they probably change the score each day 'lets see who gets 35 today shall we and they can have the magic next injections!')

matilda I also love the baseball bat across the back explanation! i sometimes feel that it's like being kicked in the back followed by contraction pain that goes down the legs, especially when it 'goes' as I move. But, who bloody knows. It's probably actually in my head anyway!

Right now though I actually do feel a bit fluey. I think that, although my back pain has increased again it's because I have an actual bug this time I have headache, sore ear/throat/neck/glands and think I have managed to not feel it so bad due to being doped to the eyeballs Maybe that's why I have been having some hot flushes !

One thing I have excellent strength in is my pelvic floor. I used to have very bad problems with holding my wee, all my life, like, in the car driving to london and I would have to stop most service stations on route, would drive DH mad! until I was pg with DD. Then, for some reason it sorted itself right out! But, because I have always had poor control, I have always worked hard on my pelvic floor muscles, all my life, to avoid embarrassing moments, and so now, I have super strong muscles! Midwife said she wonders if it was that my bladder was not quite in the right place and so emptied a bit too quickly and then DD pushed it back into place. I think that has something to do with, along with only having one kidney (and not knowing about it until MRI for back problems) which is lower down, possibly everything was in the wrong place and DD shifted it all about! I do get some days when my bladder almost stops working and I pee every half hour or so, but I link that with drinking too much water. It's probably got a lot to do with why I don't drink much water, old bladder problems.

The secretary didn't call as she said she would. I was actually surprised she called on Friday so best not push it with my expectations!

I agree with Pavlov on that, Cowmop.
I used to call mine 'hip ache' before the op aggravated it and they identified it as chronic nerve pain. I can't believe I put up with it for so long. Thank gd I'm on painkillers. Don't want to go back to putting out with an 'ache' that kept me awake in the night for hours.

Me n my crappy memory.
Pavlov, our bladders and pelvic floors are a mystery unto themselves! Your DD did wonders! Wow!

Can't remember the other thing I just read n wanted to respond to.

Worried that my 'hip ache' will return or that I'll, gd forbid, have to take painkillers forever.

One thing to run past you pros:
I went to my third Physio appointment today. Not that impressed. Lasted 20 minutes. She adjusted with tiny movements or said 'that's great' about the 5 little exercises she's set for me to do daily. The fifth was given today. Quite Pilates-like. Boring. Said last time that I needn't bother with all but two of the 11 exercises the fab physios at RNOH gave me. Being paid for by private health cover but obey a few sessions granted so they're like gold dust. Feel like I'm wasting them tbh. Any thoughts?

Some people advocate physios and get much more from them than it seems you probably are, but, slowly surely does it. I personally found them a bit useless, I was given tiny exercises which appeared made up, and were based on the physio not being a back specialist and a bit out of her depth, as I found one appt when she went 'argh!' and run off to get her boss when I presented with no feeling in my foot for the second week. Funnily she was the one who completely dismissed my comments of feeling flu like symptoms (and some occasional vomitting) immediately prior to back 'going' and said it was nerve pain. She also told me that the disc cannot 'leak' gunk as it's a solid structure yes, exactly. And I never bloody got a massage.

But, i don't know what you should be expecting in your case, does the physio you see have any clue about the op you had, and the goal from physio following that?

seeing as we are talking opinions - I think I need some release in my muscles/spine, possibly the lymphatic system needs a drain/clean up, and the whole myofascial stuff probably needs rejigging after surgery. So who is best to give me a massage or sessions of massage/movement to get things shifting about a bit? osteo or chiro or someone else?

I hate the physio -total waste of time, squeezed my hips and said 'does that hurt?' I said no so she declared I lacked core strength and gave me about 5 exercises to do which I did religiously and they didn't make a blind bit of difference

I always seem to find the money for an osteopath though

I'm having a grump with my gp today -I went in and asked for amytriptyline (lost the ability to spell) because I know it works

Apparently I've not been in pain long enough this time so keep going with the co codamol -it's not working!!

Going to see if I can get an appointment with the MS team this week and see if they are a bit more helpful

17, that's soooo crap re Ami

Pavlov, your Physio sounds even worse! Gd only knows. Maybe I'm expecting too much.

I also hated physio. Saw two different therapists one of whom made things far worse.

The cricket bat analogy is a good one. that's how my lower back feels most of the time. Like it's bruised following a whack.

Pilates has helped me a lot but it's a one to one private lesson where I get the instructor's total attention so I don't do any wrong movements. At £65 an hour it's not a long-term solution though!

I've got a job interview tomorrow morning and I'm currently getting waves of pain every time I breathe a little bit too deep

I'm going to have to cancel aren't I?
Sob!

hello to all, had a brilliant day today getting my barnet sorted- it is now coppery with blondey copper at the ends and a few swatches of pink through it. It looks better than it sounds , honest. Anyway although the day has left me rather sore it ws deffo worth it! I had a pleasant meeting with my boss where they wished me luck for the op, suggested a couple of things to do when the ssp runs out in April( I can leave citing ill health or transfer to a casual contract with no obligations as such) but either way they have said if I ever want to return part or full time I will always be well come. They will send me a letter with ssp details and any others i need for the benefits office etc. Then i went up Oxford st since I wont be going shopping for several weeks probably- had a mooch, a coffee and picked up 2 summery dresses from new look for tenners each. It was a bloody lovely day and so it was really nice to be up there, window shopping. Then went to the hair appt, lots of sitting but plugged with plenty codeine and very happy with results plus had a fantastic head massage from the shampoo-ist. Far too much walking left me on my last ebb at about 7pm but I can rest up a little tomorrow

I agree with you all about the pain descriptions- I tried to give plenty of adjectives or analogies at my pre-op appt with the registrar and consultant. The "deep hip pain"- had that during my spd bouts but not since until recently just started having that this week and it is the worst one so far and painkillers didnt touch it, grindy ,felt like my bones were aching. Wanted to describe it like my pelvis and hips were made of rusty metal ??
The most common pain for me is right at the very base of my bum- in the SI joint? and it feels heavy, dragging, like there is a bowling ball attached there and feels a bit hot. If I miss a dose of pills it feels like it is hard to walk because I am pulling the bowling ball behind me ?? The shooting sciatica-type pain sounds horrid, that must be really unpleasant to deal with. Think I get the cricket bat one too- bruised feeling in lower back - more on the right, a bit like when you have done a massive workout the day before and your muscles are sore enough to hurt. Sometimes I get a pubic bone pain too, not around at the mo which is good. The tissue in all these areas is a bit tender to touch- have wondered if this is fibromyalgia because i have some other symptoms associated with it- mind-fog sometimes, tenderness, Have always been quite an anxious bod, lack of exercise and winter can make me really low. I used to have ibs, it went away for yrs but lately i am avoiding wheat coz it was giving me bloating and tummy pain. I am on a one-woman crusade to make a really delicious wheat-free !

Sorry, wittering on a bit. 6 yr olds sound kerazy! my 4 yr old is revving up his cheekiness daily. This is a good week as he has been saying lots of words, he was singing the alphabet to himself to go to sleep tonight I need to spend lots of time with them tomorrow as it's the last full day with them- uni on weds and going in on thurs, shitting myself a wee bit now. If I do all the things i want to by thurs it'll be a frickin' miracle. Havent done much work on my essays, shit, must knuckle down for a couple hrs tomorrow. Getting hard to find the right headspace as my pain level is a bit up from january when last essays wre due- finding the right margin between pain and fuzziness is hard to maintain and compared to you guys i am a novice since it has only been bad since last august. Hope you are all sleeping peacefully with no night aches. The spd used to make me turn over throught he night and most night i ended up sleeping half sitting up. There are a few others here with spd history i see. matilda have they investigated your hips? (sorry if you have already said and i missed it)- it makes sense the hip/back pain could refer either way. I nearly always feel it in my back and i hope that doesnt mean there are any probs there too. Nothing disc like as the chiro and doc have felt down my spine.

I dont have much experience re diff between chiro and ostio but my chiro does the myofascial thing on my hips most times- it is a killer- i get alot of tightning up there. It makes me grimace when she does it! pavlov I think my bladder control is also improves after pg's- and I had bladder retention with my first which was godawful. The pain just before they drained me with a catheter (1.5 litres in half an hour) was almost as bad as labour contractions. I just woke in the night unable to pee and had to go a&e. Had to keep the catheter in a week. It started to happen again with no.2 but i recognised the feeling. I had a week of getting up in the night and having to pee standing up in the bath! not pleasant. Then it passed

Anyway high time to go to bed with my hottie, sorry about the bleddy essay-length post. I am very chatty, can you tell? Maybe coz it's 2am but do you think it matters that i dont have a will? I know probably all will be fine on friday but you think well it does happen rarely- we are married, would everthing just go to him , no? as i have an account just in my name. over-thinking i know but feel like responsible/ sensible to consider these things.
cowmop that bunch sound like a right bundle of twonts, do what you have to do to get them to give you the support and any investigations you need. I have found recently the nhs physio has been shockingly bad but the lady i saw when i was pg first time was great and took my hip x-ray to extra people to check - if she hadnt i'd still be none-the -wiser. Have only once had any manipulation at all- they said they only do it if you have disc problems and cannot move properly/range of movement. One guy recently kept nipping off to ask someone else what exercises to give me and had me doing the same thing for ages. half of one session he just left me doing ones i already knew while this happened but thn didnt add any new ones. They asked pain levels but even when they got highr still said- well your heding for discharge, a joke really. I missed the last session because my son was ill and just went back to the doc to get referred again and they just sent a letter saying i had missed the session, had been discharged and totally ignoring the request to re-refer!! But they cancelled one of my sessions last minute when he was ill- but that is totally different of course, sorry to end on a belly full of ire, butterflies, peace and cupcakes (no wheat) to you all

I promise when i am recovering i will post amaller and more often

i mean smaller

17 sorry about the job interview. Maybe just not the right time? Hope you're feeling a bit better.

My leg pain is back with a vengeance. The injection just switched off, quite strange. So leg pain last night even with ami and had weird Trammy dreams all night. I keep forgetting not to take it in the evening but memory crap. Just forced down some porridge so I can take the sr Trammy soon. Really want to go swimming.

goodness I just think physios vary so much. It's true that with my Pilates hat on, tiny exercises beautifully done make an enormous difference so I'd try to keep going. I don't see why you need to ditch the others though if you can manage it all. Apparently one of the best exercises for your glutes is walking in water so get to that pool as soon as you're allowed. Not being creepy but it's only four weeks today since your huge op (same day I flew on my hols) so it's still very early in the healing process. Slow, steady recovery is truly more sustainable and realistic. I'm in awe do how far you have come.

maizie love the hairdo news. I had my brows and lashes done before my op, how vain is that! Just remembered a funny thing. When I was almost unconscious and just coming round the nurses checked my ID band and started a debate about having the wrong date of birth because I looked too young!! Think the anaesthetic must have smoothed out the creases . I was supposed to go in thurs pm for a fri am op but after endless waiting for The Call I was told to come in at 7am Friday and went straight to theatre from a waiting room. It worked ok, though. It was obvious from the set up they often did this so don't know why I wasn't warned. Yes, my hips sound very like yours, shallow sockets, wear and tear (dysplasia and previous major surgery as a child) I had an MRI just before my back went. Funnily enough my hip has been fine ever since! Sure the two pains are connected.

pav wish I could send you my physio. She does such great massage. There must be qualified sports massage therapists near you? I've seen a few and all very good. Very holistic, too.

Ok, tramadol and the ironing await.

Oh and hi to nancy, waves. I love Pilates, too. I do one to one weekly, it's one of my guilty pleasure!

Went to the interview, got through on pure adrenalin!