Back Again! Back Pain Support Thread

[PavlovtheCat]

Only right I start the new one seeing as I was responsible for the last one ending so abruptly !

This is a support thread for people with back pain (that does not even cover the description of hell that back pain causes). It's for all types of back pain, for long term posters with chronic pain (including those on the upwards journey to recover), short term advice through tough acute episodes and all the in betweens.

We moan, winge, share successes, guide each other and hand hold through the maize of a million medical routes and options, treatments, investigations. We internet shop as a form of pain relief, drink wine, take strong painkillers, eat cake and we go through lots of heat packs!

We don't always have the answers but we do have a lot to say about it all

Here are the links to our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues
www.mumsnet.com/Talk/general_health/2023274-More-Terrible-Back-Stories

I posted a few weeks ago and got some good advice so I have come back to ask for some more, please?

I have had back pain / hip pain / joint pain for many years, started off by Symphysis Pubis disorder which took years to (partially) resolve.
I still have a lot of hip and lower back pain, and 'joint pain' generally.
I had an MRI 3 years ago which showed deterioration to L5/S1 areas.
Since then, I have had a lousy GP who told me to 'take paracetamol from the chemist'.

For around 3 years I have had huge trouble with feet.
Collapsed arches, plantar fasicitus (sp) and pain around ankles, lower legs. Find it hard to walk far, by evening time can barely walk at all.
Back pain continues.

GP useless and would not refer back to good local Ortho Consult.
I saw Consult privately and Consult wrote to GP to ask him to refer me back via nhs as potential surgical case for an operation which only he performs locally (we are in the arse end of nowhere!). GP referred me to someone who cannot do the op. I informed Consult who had me moved to 'his list'. He asked for fresh lumbar spine MRI which showed no real deterioration in last 3 years.

So his conclusion is that I need

Peroneal Nerve surgery to both lower legs and both ankles because the deep and superficial nerves are compressed and this is what is causing the pain which is referring all the way up my legs to my back also.

Has anyone heard of this, please?

Bollocks indeed to non Fly shoe wearing. At fracture clinic with DS1, see you later

Yes, I'm another who has done childbirth sans pain relief buts swallows the drugs now. There is a big difference though. Childbirth lasts a few hours and you know that at the time. And nobody expects you to perform your daily activities at the same time.

PE sorry to see you here! sounds like you've had a pretty crap time. The variations in regional treatments are staggering. I'm not the person to ask for a happy outcome but I will say this, ( please forgive me for being a bit negative I do mean well) . It is unlikely to solve all your problems. After so long your whole back is now changed and a simple discectomy probably won't cure all your ills. It's especially good at helping nerve pain but less so at back pain which is commonly due to muscular spasms and postural problems caused by the pain of the disc. I really hope it helps you though and you can begin to get your life back.

I'm not good today. It's the dinner party payback. Quiet one for me.

losty hello honey. Sorry indeed to hear about your flare up. Any element of stress levels causing this do you think? Stress does terrible things to the body. Hope you can soon get off the heavy duty drugs. Keep posting if you can, you're always so supportive.

pav sending a hug to you. On Saturday evening all my friends were wearing their lovely elegant shoes. Except me. I did wear my new Fly wedges I patent red which I love but they are hardly elegant

first sorry, no knowledge of anything like that. Sounds quite a niche question, maybe post a new request for help on the boards. Hope you get some answers.

I went out between starting and finishing my last post and see lots have answered the surgery question. Interestingly we all think more or less the same. It's sad but surgery isn't the be all and end all cure except in a few situations.

The shoe thing is really frustrating isn't it? I can just about tolerate a low heel (max one and half inches) but anything else sends my back into spasm.

made my peace with never wearing heels again

Nerve pain come back with a vengeance today so going to up my Gabapentin by one tablet and see how I go

Hope everyone else has a pain free day

Also rang the pain clinic today to see if I can have an appt with my consultant to discuss the way forward. I got a straight no and told to wait for three months when a nurse will call me to discuss the outcome of the spinal injections. I could have told her then and there. They haven't worked and have made the nerve pain worse

loon I was given 80% chance of discectomy being successful, with around 80% improvement if it works, with those stats being improvement in nerve pain. So similar to info given to you as well. Surgery is so difficult to make a decision about and it's hard when the ball is put into our court. With my discectomy my surgeon was quite clear 'you have a prolapse that I recommend is fixed by surgery, and these are the statistics of success'. However, PE I also have a slight slip of my vertebrae so my surgeon was also clear that he may have to consider fusing it, depending on how the discectomy went, and there is always a chance of re-prolapse (around 1:4/20%) which was a little higher as it there is a chance the slip caused or contributed to the prolapse in my case. And, that is largely where my experience changes from yours. I will say that immediately, I felt huge relief from leg pain, amazingly so and this lasted some weeks before deteriorating for an unknown reason, which is likely (but he won't commit fully) to be due to movement of the slipped vertebrae irritating the nerve.

At the same time I was in touch with some others who were recovering from similar surgery and they were coming on great, one started running again at around 12 weeks (slowly but built up quite quickly) and so it can be successful.

But, if you are experiencing some breaks from the leg pain, it is worth looking at seeing if you can manage the nerve pain with nerve blocking painkillers first, with surgery there as an option. it doesn't have to be an either/or. My surgeon was clear that if I felt on the day of surgery that I could manage my pain without surgery, that would not take me out of the system, I could be added back to his list if it deteriorated again without going back through referral from the beginning. And if it was longer than a year since our meeting, he would just need to complete another MRI before putting me back on the list to be sure it was the same problem. I am not saying you should, or should not have the surgery, but there is no harm in exploring those other options first if you are unsure about surgery straight away.

I also agree with matilda that following chronic pain for such a long time, surgery is less likely to be the 'complete fix' and it may be that you will need to think about some nerve blocking painkillers, and certainly more than what you are taking now, for a while post surgery.

Whatever you decide, we are great at hand-holding through those decisions.

matilda hope you are not suffering too much, and resting well today.

losty oh no is DS ok?

msdj I meant to say, good idea to increase by just one tablet. Sometimes, it's all that is needed to take the edge of increased pain. But, do remember that gabapentin can take up to two weeks (or a little longer for some) before you start to see the pain relief benefits in full as it takes a little time to build up in your system. It's one of those meds that works best the longer you take it, so you might not see any results within the next day or two, but bear with it.

hey all, just posting quickly, have another essay and a report to write up from our first REAL experiment- on REAL people! It was tonnes of fun, very simple stuff to do with them but a start and gave us all a buzz of what we will be doing in the future on the degree. I am going to try to write it up this week - much more straight forward than an essay.

To all the spd sufferers , big hugs as I also had it with my 2 pg's and had ups and downs with back pain in between- and horrendous plantar fasciitus which at its worst made me unable to bear weight, felt like my whole foot was burning and simultaneously being crushed- I was working full time in kitchens and used to clingfilm a spare pair of trainers and put them in the freezer till cold then wear them for 20 mins sweet relief. I mention this because the foot probs always came back with pg and went away but then returned as my back flare ups got worse last yr, went to podiatrist and got orthotics, still had probs for few weeks- then when I was off work sick when back flare up persisted, my foot problems evaporated!!?? I dont know why but it's worth having a period of rest to see if it will help.
I found that alot of peole do not know much about the condition - and how it is linked to other things as i am sure it is. The initial productin of too much relaxin could even be seen in terms of an auto-imune reaction ?? anyway I have had foot problems alot, and on and off GI issues as well- told it was IBS years ago, cut out all refined starches and white rice, it gets better in pg and i can eat whatever i like and now recently has gotten MUCH worse, am getting bloating, discomfort and sometimes sharp abdo pains if i eat whaet, and now some gluten foods aswell. stating to get bloated after every meal lately, have a doc appt tomorrow so i will tell him all about- very intersting i'm sure NOT! feels like everything should be connected but maybe it's not.
so sorry to hear all those suffering bad pain at the moment, hope you are getting support from loved ones and if gp's are shitty i totall concur, get another any way you can!
I ws misdiagnosed yrs ago with scabies when i had allergy-triggered exzema, it made it much worse, they then thought psoriasis, eevntually i walked into A&E in desperation and they said it was infected (i had some fluey symptoms) and were gladi had come as it could have become septacemia quicte soon after. They refererde me to dermitology, did patch test and it was nickel allergy- so easy, what a messup!
sorry this was quite memememe post, havnt been on for ages.
having a shit day as SEN support school alovcations bods want my ds to go to special school for his asd and i think thy have got it wrong so one more massive ball of twine to soet out now and a massive headache about it, got me very upset. Will tell you more about it later, hope everyone is hottie=ed up tonight and pain levels reducing.
Still titrating up the Gabapentin- it seems to be helping a bit, stuck at 600 because the doc filled it wrong and gave more 300's when i wanted 100's for titaring- obvs they dont read the notes you give in! only got it before weekend coz i rang up3 times- and waited 4 dauys anway, instead of the usual 48hrs grrrrrr

Evening everyone,

Catching up on the thread it seems there are a lot of you in pain at the moment -I wonder if there is something in the air?

Hope everyone is ok x

17 rain. there is a lot of rain in the air…

…maybe dampness increases pain. According to MIL it does. So I guess it must be true That's her reasons for not moving back to UK from th desert. It's too damp here and the houses are too small although goodness knows why an 80 year old needs 4 bedrooms and several acres of land

hope you are ok 17.

I am awake, sandwiched between two sleeping children one of which is still a bit poorly. I am bored. I am also hungry but I know that's not real hunger as I want something sweet. My sweet tooth is bad these days. I never used to be big on it, but I need sugar these days. Not necessarily chocolate, but hairdos, wine gums, jam, yoghurt, that kind of thing. And coca cola! what's that all about

i guess its obvious i'm awake...

I don't know Pavlov, you could be a prodigious sleep typer, we don't really know you after all

Sorry, I meant to come and chat today but DS1 broke his hand on Friday (oops) so today has almost entirely been taken up with fracture clinic. Just popped my morphine so will be legible for about another 10 minutes then it's anyone's guess!

In the rheumatoid FB group I'm in (although I'm not actually RA, apparently, more tests to go for proper diagnosis) there seem to be an awful lot of us really bad at the moment. I do wonder what it is all about. I think we will all be dead and gone before it is puzzled out properly. Wow, I am so cheerful tonight!

Maizie that's really thought provoking. I had bad SPD, especially last baby. I also was high risk for DS as I had way high levels of one thing and nothing of another. Everything must be linked somehow? I had unusual bone problems at about 10 years old and again at 16, in my knees, then my back pain started at that age which also coincided with my starting to go deaf. I think doctors really need to start looking at whole people rather than specializing so much they can't see past their own specific test results.

You sound very awake pav

I'm going to whisper now but my back is relatively ok at the moment as long as I keep taking my meds

I managed a whole trip round the supermarket today without having to walk with a massive limp by the end of it

But just to compensate I stubbed my toes in my daughter's pigsty and I think I've broken two of them -just got into bed and I can't bear the sheet touching them so my foot is currently poking out the end of my bed

And I hate to say it but I agree with your mil -my back is always up and down so that means nothing, but I broke my wrist 10 years ago and I can feel it when it rains

17 I don't mind you agreeing with MIL, she is sometimes right about the strangest things actually. Possibly not about putting her baby son at the other end of the house with the doors shut so she could get some rest after he was born though. And I suspect there is something in it re dampness, I have been horridly pain ridden over winter and it's the first winter post op, winter before the prolapse caused the pain, so hard to say if the weather made it worse or not! Summer will be the test for me.

Glad you have had a reasonable period, and this lasts. Remember to take it easy though, don't rush into things just because you feel reasonable.

losty I bet you lot here know me as well as many people in RL. Apart from me being hairy and driving a truck. You didn't know that bit before now eh? hope DS is ok? does he need surgery? what did he do? How are the steroids working? any success with them? How about the morphine ?

I agree about things in our bodies being linked. I am going to get my notes soon when I get around to requesting them (never get time to call in the daytime) and it will be interesting to see what things might have taken place as a child that may link with things. I know I had an injury which probably caused the disc injury, but I suspect there is something else underlying which won't be diagnosed for years, as prior to back problem I was not 100% and thought it was thyroid or pituitary gland problems but it became less of an issue as I became consumed with this back problem.

And I think as females in particular, our hormones play a huge part in our make-up, in how we feel health wise, and when different hormone levels change, even a little, in a direction that they are not meant to, surely that must have an affect on our bodies, and long term implications for other health issues.

I am interested to read more about the links between back pain and infection, and keep meaning to speak to my GP about the antibiotic research for curing back pain in something like 40% of pain sufferers. Someone who posted on here, who I have 'known' for a while tried it and it gave her some degree of relief for a while, but I guess her pain was so long-lived before she got treatment it was like surgery, unlikely to fix the problem completely.

17 and yes, I am awake. Goodness knows why. I think I am just bored. Of being too tired/in pain to do anything in the evenings, not even horrendous pain today (yesterday I was) just nagging, constant pain. And I don't really want to sleep as it means waking up in pain, starting it all over again.

and *17 ouch to the broken toes you should get them checked, as sometimes stubbing the toe can break a tiny bone in the foot itself, an impact fracture, can't remember what it's called. I don't think they can do huge amounts for it, and likely you have the painkillers they would prescribe already to hand! But they may be able to ensure they are strapped properly so they heal straight. I have broken the toes next to my big toe several times in my lifetime, possibly more times than I ever knew, as they are longer than the big toe. Well, were, now they are sort of claw like and shorter for it!

hiya again, I am very awake too, even though dd and ds were u about 6.30am! dd's new trick in the am is to swing herself out of the cot straight onto me for a cuddle
oh and forgot to mention pcos which alot of us seem to have and could be linked too as it's endocrine/hormonal. I also have had pernicious rcurrent thrush - as you mention infection, and have had 3 uti's and a few sinus infections that took a very long time to get rid of- not statistically unusual i'm sure :)
Have my MRI on Tuesday at 8am- i chnaged it coz i needed the afternoon free to go watch QI (hopefully, have to wait to get seats.
do they evr tell you what they find straight away? probably not i reckon.
hpw did yours go Pavlov ? and when is your next painiac sesh? though they were a bit useless last time weren't they?
ouch 17, your poor toes, hope you can see a gp quickly tomorrow, dont suffer in silence.
was a bit down about the ongoing grind of this unknown pain- but felt a bit bad for feeling that way when i came on and caught up coz you all sound like you have a very bad deal at the moment. I should count my blessings really, still being somewhat active, just not as much as before. I know i'm only at the beginning possibly and it might get better but i cant help thinking at the moment about the posibility that it nevre will. sorry didnt want to bring you guys down, I think u r all amazing for what you go through every day.
I sense there is a downward and upward swing at play and i ight be on the "I want to do x and fuckit i will, need some normal" tomorrow- i want to take my ds swimming and have avoided before coz i know it'll exacerbate things but time goes on and i dont want him to miss out.
hope you are all having good night's sleep and no night pain
have made a spelt, choc and almond cake with choc frosting- all because dh boiled up icing sugar, didnt need it and i didnt want it to go to waste! hope it tastes nice, wheat free! hope it doesnt set me off bloating as some new things are doing it day by day, fx

Quick pre-sleep (I hope,) reply. Dyspraxic son slipped down steps at school and instead of putting his hand to stop punched the wall by mistake, so has a boxers fracture of his 5th metacarpal (long bone down the outside of the hand part). He's basically knocked the knuckle off, fingers crossed (mine not his!) should resolve ok, will always have a slight deformity of the knuckles but as long as the knocked off part doesn't rotate he will be ok without surgery. Back a week on Thursday to check.

Steroids started to kick in today, it is a massive relief as nearly every joint in my body has been inflamed, ouch! Just weird because I've been wired with the steroids but also more 'awake' than I can remember being for a long time. Going back to the whole body approach, if you looked back at my GP notes there will be a lot of TATT's or tired all the time, I must have been going to the doctor for 20 plus years about that. Morphine is sadly un exciting, just been nice not to wake up in pain every couple of hours which I have been for a few weeks now. I also don't think that it is at all surprising that at a very 'stressful' time in my life (bils accident and recently H moving out) I have had massive increased in pain but also tiredness and general 'fluiness'. Just gutting to know every time it happens there is more irreversible damage to my bones. Gah, bodies.

The hairy handed trucker thing btw. Suits you

I just don't get joined up work not being done with medical professionals. In my job, we could not do it without working closely with other departments, agencies, sharing information. A small bit of seemingly irrelevant information here and there shared can on occasion make us go 'holy fuck!' and actually realise there is huge risk to someone. (Not surprisingly, it's often a child who is at risk, and not surprisingly, it appears to not be unusual for missing crucial information not shared to be information from a HCP, either from one HCP to another, or from HCP to outside their field).

if they all talked a little more, they could probably save millions, maybe more in misdiagnosis, failure to diagnose and all the unecessary diagnostic costs, not to mention ripple down effects of sick days, loss of employment etc that happen when it takes too long to diagnose because information is not shared, that's before even thinking about the moral and empathic reasons of not keeping people in pain unnecessarily and for length of time that is disproportionate.

Hope your DS gets mended soon, is it his writing hand? How are you managing with recently uncivil H? things improving at all?

I am going to try and go to sleep now. Pain is increasing. And I have that horrible foot pain return. I have read that change of posture can cause pain as the ball of the foot distributes the weight of the body evenly across the foot, or something, so if it's out of position it takes more weight than it should, something like that. Anyway, I know my flats made it worse, as there is no cushion at all on the sole of them (old), so back to Fly Boots tomorrow. I shall wear my new skinny jeans so it won't look bad, just not Office Smart.

Think I'm going to have to get my toe checked, woken up this morning to bruising tracking down my foot -I'm going to feel like a right idiot 'excuse me, I stubbed my toe!'

You should, well I hope you have by now, it does sound to me like you've done some proper damage. We radiographers are so good nowadays we don't need x-ray machines, we can see through the internet , sorry, I am being serious though, do get it checked, sounds awful. I broke mine on a bit of kitchen skirting board once. Had no time to get it checked out that day and it was horrifically painful in the evening. A good clue as to why it's STBexH not DH was him saying 'can you stop walking like that it's embarrassing' when I was limping around .

YY DS's writing hand, just in time for the start of GCSE courses this week never mind, he's a clever boy, just hope he doesn't need an operation next week. Hope you managed to have a good nights sleep and are rocking your (old) fly boots today.

I'm sat waiting in the walk in centre now

Not sure why though, can you actually do anything with a broken toe?

Depends what you've done! If it is aligned ok then it'll probably be left but you won't know until you look. Wish I could come with you, I wanna do your x-ray .