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Back Pain and Internet Shopping. Thread Number 5.

(1000 Posts)
PavlovtheCat Tue 07-Oct-14 21:39:52

Those who have long term back problems know that the best way to help manage back pain is to internet shop for shoes, bags, and back support devices. Those who are new to back pain, these are important lessons to learn.

And here within this thread is where you will learn those lessons.

You will also find other helpful advice on pain management, different treatment options from hydrotherapy and physio to surgery, experiences of others navigating the big and scary medical world, both private and NHS (and abroad from the UK) too, as well as issues around work, being a parent while managing pain and disability, and the impact on the relationships around us.

Between us all, we have a huge wealth of knowledge and experience, and more than the practical advice, the jargon and information, we know what back pain is like, how much is affects everything around us, and sometimes, all we need is to have people listen who Get It.

We talk painkillers regularly, have hot water bottles and wheat bags galore, and hold hands a lot. It's potentially all very Unmumsnetty as we do actually show some lovin' from time to time, although we Never Ever call each other hun.

If you have advice, need advice, need a hand to hold, want to do some shopping, then come in. We are friendly. We talk a lot. Come in, have a brew and say hello

You will see just how much we do talk if you read our previous threads (where you may glean lots of answers about pain relief, surgery etc, best winter boots etc):
www.mumsnet.com/Talk/general_health/2049637-Back-Again-Back-Pain-Support-Thread
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

PavlovtheCat Tue 07-Oct-14 22:11:25

ok, i'll kick off on our new shiny thread if that's ok.

Hey all. Quick background. 3 years of back problems - disc prolapse, slight vertebral shift, sciatic pain, and now vertebral end plate damage and other stuff. gone from active, fit, water loving mother of two little ones, to a miserable, fed up, non-active, frustrated mother of two slightly older ones. I have had a discectomy which was partially successful in that it fixed the disc problem but more problems arose post surgery, including re-prolapse. Had caudal injections which worked for a short time, but nothing momentous. Had hydrotherapy <meh>, physio <meh>, private physio <ouch financially and meh>. Largely managing on a shit ton of drugs. But, not as many as others who will post later.

So that's me. For those who might pop in who don't know. Relatively quick for me!

So. Just had injection. And today I had the follow up. It went something like this:

1. no further injection to be offered for the time being, as next one won't last as long, and so it will work for less than a month, but should I have another flare up, he will do it again.
2. the pain is very likely, he was pretty convinced, coming from my end plate damage and odema
3. It's gonna get worse, not better as the end plate damage continues. There is nothing that can be done to slow it down, or fix it. It won't heal itself. My back will get more and more stiff. (I already know it means the disc is gonna die completely, and if I don't have fusion, the spine will fuse itself eventually, but didn't tell him I know that).
4. Not ruled out a potential infection in the spine, due to continued localised significant swelling at the base of my spine and my symptoms of flu type feeling in my back. He initially said that he didn't think it was an infection because if it was, the steroid dampens my immune system and I would feel horrendously unwell. I asked him how long it would take for that to happen - he said 1-2 weeks or so. I explained to him my enormous flare-up of pain and flu like symptoms last week and week before, and he went shock. The timing is out, but the coincidence of the big big flare up has caused him to re-evaluate that (another reason for no more injections right now). He thinks it's probably not, but agrees there is definitely inflammation going on, and it's being caused by something, but may just be the odema of the end plates. I explained I have had this flu stuff going on for a long time, but last week was the worst.

So, full bloods and CRP done, at his suggestion, almost straight away when I mentioned last two weeks. And he wants me to monitor my temperature regularly, mid afternoon and in the evening, plot it on a chart so it can be observed by my GP.

But, he doesn't want me to see him for 6 months 'to keep me in the system'. IE, my GP can take it from here re the inflammation etc.

He has said, I need to stay positive, not 'feed' the pain, keep doing normal things, use my crutch if I have to, to stay mobile, keep my fighting spirit, and I stand a good chance of beating this pain. He then went on to say DON'T do that much exercise hmm, he said don't try to 'fix' this, don't try to rehabilitate, but swim, just for fun, just to get into the water. He said he can imagine I will try to do too much, but I must not do that.

I am not really sure what to make of it all. London seems a bit pointless if this is the reality. Gonna go anyway. But, not sure what I will expect as I don't know if they can fuse it now. Although, it's gonna fuse at some point it seems.

<sigh> I don't feel too upset. A little bit. I sort of knew I am not going to improve, but actually, almost found it helpful to have a frank answer to 'what's causing this pain', when I have been given the run around for so long now.

Oh well. Best go by myself some nice crutches now I actually know I should be using them on bad days (he was very clear, use whatever I need to get moving and live normally, crutches or stick, whatever I prefer).

pinkkoala Tue 07-Oct-14 22:51:45

Matilda, yes you are right, I have never had time off in fact I was always doing above my contracted hours as was always covering for others thst were sick, now I have been off since july, trouble is I feel bad as so not like me.
pavlov, wow you have alot of back issues, I csn only imagine the pain you must be in.
I went for another job today, as a ta in local primary, I explained I was off sick and what with and the head said she understood as she had had the same 4 yrs ago, I explained I wanted job change and that gp and physio have said to try and get job with lighter duties, she seemed ok.
I regularly speak to one of my friends in my current job and she had said workload alot heavier as more rrsidents need hoisting, and there are two care assistants who are pregnant, in early stages. And another now on long term sick.

QueenBean Tue 07-Oct-14 22:56:39

I'm gonna come on and say hi, although mine isn't as bad as some others.

2 prolapsed discs (L4&L5) about 2 years ago. Many painkillers and very much physio later and I'm pretty much ok.

However, every 4/5 months I get reoccurrences of muscle spasm / pain / sciatica etc. One of those happened yesterday so I spent much of my work day today knelt at my desk just to avoid sitting.

Why won't they make work chairs especially for back pain??

It is so frustrating and painful, I know it happens when I'm lazy with not keeping up with my physio but such a jolt and surprise when it does. Also makes me feel very vulnerable too.

So will be lurking and reading and hoping for a magic cure!

Matildathecat Wed 08-Oct-14 08:38:57

Good morning everyone on our shiny new thread. Thanks Pavlov for the new introduction page. You forgot to mention wine! What's wrong with you, womanwink!

Another really important thing with this thread is that it is strictly non competitive. So no 'my pain probably isn't as bad as you pain', please. Pain is awful. Full stop.

Quick Matilda history: again, super fit, swimming, Pilates, dog walking midwife who woke up one morning to the grim parallel world of The Disc Prolapse.. L4/5 so it turned out. Severe back pain that lasted many months and after tons of drugs, physio, some failed injections and abject misery I went under the knife and had a private discectomy and looked forward to putting it all behind me. Not so. My leg pain got vastly worse and leg became so weak I needed a stick. My back pain was no better. My surgeon was unconcerned and told me I was fine confused.

Eventually I saw another surgeon at a top neuro hospital. He instantly looked at the post op MRI and diagnoses very severe scarring all around the nerve root causing 'very significant' compression to the nerve. He didn't hold his punches; no surgery, no hope, yes surgery some small hope but it could get worse. Had surgery and laminectomy. It did get worse. But. But...he saw the reason during the surgery. Surgeon no 1 had cut into the nerve root. So end of surgical options.

Now onto the nhs' poor relation, Pain Management. The world where you wait months and months for each and every appointment. I've had around 7 injections, a lidocaine infusion, done a Pain Management course and learned Alexander Technique ( this is good). There really isn't much more to be done.

I've spent an equal amount of time and tears battling the DWP for disability benefits with some success. I have a Blue Badge. I hope soon to finally have some Ill Health Retirement pension. Did I mention getting dismissed? No. Well, I did only work there 25 years.

But, and if you got this far congratulations, I am ok. Sort of. I do drugs, swim a bit, do some Pilates. It's all modified. My friends and family have been a marvel. However, one place that has truly Got It is here. I started these threads never thinking for a moment how it would bring new friends and also let me 'meet' people who actually knew what it was like. I have had some excellent advice, and not only about shopping.

So please don't hesitate to post. Newcomers most welcome. We can't cure you but we will listen and sometimes offer bossy advice our experiences.

Matilda, shut up. grin

denialandpanic Wed 08-Oct-14 09:56:04

morning all, I'm the one with the inflammatory arthritis (psoriatic like rheumatoid but slightly different similar treatment) and I'm constantly highlighting to people awareness of inflammatory back pain (will post a link to signs).

Work in local government, currently on the wrong side of fitness to work policy for too much absencesad .On the bright side I'm on new drugs that are helping and the back pain is slowly but surely improving. I've also had some success with the pain management clinic injections (si joint and l1 to 3 I think). I have a disintegrated facet joint or two, inflammatory spondylarthritis, degenerative disk disease all the way up and more of those inflamed end plates.my other joints also like to wind me up mainly hips, knees, shoulder and ankles currently.

I love swimming, walk running and enjoying a physio led Pilates class (private). My repeat prescription runs to two pages but needs must etcwink

denialandpanic Wed 08-Oct-14 10:03:51

http://nass.co.uk/getting-my-diagnosis

denialandpanic Wed 08-Oct-14 10:05:11

can't linky link on my phone basically back pain that improves with exercise, insidious onset before the age of forty, worse at night should be investigated as inflammatory back pain.

magso Wed 08-Oct-14 15:35:24

Hi. I join in from time to time but don't consider myself to be an expert -yet. I have had neck, upper and lower back pain, trapped nerves, facet lock ups in my upper back, nerve pain in my legs and bum - on and off - mostly on nowadays for 20+ years, though it has got worse especially in the last five years following a long hospital admission for dodgy lungs (which required bucket loads of corticosteroids to damp down), and subsequent poor health. I had a couple of falls years ago which seemed to start my back misbehaving in the first place. I mostly self manage with the help of my chiropractor. I used to be very active too. Other joints complain from time to time. I have never had my back pain investigated by the medical profession- although this is partly my fault as I have always wanted to avoid back surgery - which seemed to be the only option years ago, along with bed rest.

Interesting about inflammatory back pain Denial. I get worse in the day, and nights can be difficult, but I am not sure exercise (pilates, stretching, walking) helps- although it may in the long run. Its hard to know because I have CFS/ME so get achy after any exercise. I was under a rheumatologist for a while - but once Lupus was ruled out as a cause of my lung inflammation I was not seen again

Pavlov, sometimes it is best to know the bad news - but I am sorry the news was not better. I do hope you prove him at least a little bit wrong - in a good way.

Matildathecat Wed 08-Oct-14 21:15:48

Pavlov, sorry it was such a negative appointment. I hope you restrained yourself from punching him when you got the 'keep positive and don't let this hold you back' speech. sad

Had my own version of hell today. Private medico legal appt with pain consultant who was a rude arrogant wanker. When I described my history ( he hadn't bothered to read my records), he laughed. Yes, you read that correctly. As if I was telling the story of some amusing yet far fetched film. He also fit my name wrong throughout, seemed unable to distinguish between left and right and clearly planned to use the questionnaire I had filled in to replace actually taking a detailed history. Oh, and we waited a full hour without any explanation or apology. I am beyond furious and depressed.sad

pinkkoala Wed 08-Oct-14 22:40:19

wow there are a lot of you that have far more back problems than me, its nice to read about your history though, makes my bulging disc seem minor.
I am at my worst first hiur in the morning then after paras snd about an hour not too bad, I have noticed today though that when I am sitting now I dont get pain, its when I get up and circulation gets going then the nerve pain comes back with pins and needles, not sure what thid means, I csn manage to do normal house work but still cant do the 4 miles a day doing school walk, that is too much and seems to aggravate everything again.

Quadrophonic Wed 08-Oct-14 22:49:28

Hi, I'm popping in to tell you of my positive spinal surgery in case any of you are waiting.

January 2010 I slipped down icy steps very hard onto my bottom. I was extremely badly bruised and walked like a cowboy for a few weeks. Soon after I developed cramp in my left buttock which slowly spread down my leg along with tingling, numbness and strange sensations down into my foot. In the June I'd had enough and visited my gp who found diminished reflexes in my ankle so I was referred to physio at my local hospital.
I was seen by a lovely physio who immediately put me on the waiting list for an mri scan and gave me some exercises to do as she was pretty concerned about my symptoms which by now was some saddle numbness too and the lack of ankle reflex.
The mri scan was carried out in the November and I was called the following morning by the hospital to attend straight away. The mri had shown a large disc herniation at L5 S1 the spinal column was almost completely squashed and the mri was marked 'red flag'
It seemed I needed surgery urgently but there was a 16 week wait for urgent cases. I was advised to see a consultant privately so I did. He saw the mri scans, saw me the next day and picked up.the phone to arrange surgery on the nhs For two days later. He said it was the worst case of spinal occlusion he'd ever seen.
Surgery was carried out disectomy where he said the contents of the disc had wrapped around the sciatic nerve so a lot of cleaning up needed to be done. Recovery was slow as my leg was dead for weeks causing me to limp but with lots of gentle walking and hydrotherapy things got better. 4 years on I still have numbness in my calf, outer thigh and little toes but am largely pain free. My lower back still feels delicate and I try to take care but at 12 weeks the consultant told me to go away, enjoy life, climb a mountain if I wanted to as I was fixed. I have to say the surgery was a success and the best thing for me. If anyone wants to know more feel free to pm me

[Flowers] to everyone in pain. I know how it feels x

LoonvanBoon Thu 09-Oct-14 20:17:20

Hi Quad - great to hear that surgery was a success for you. My back & leg symptoms started after I fell on my bottom too, on slippery leaves near my children's school. It didn't hurt too much at the time - the pain started a few hours later. You're the only other person I've come across whose symptoms started after that type of injury.

I have an L5 S1 herniation too - it started in May 2013 - but mine is posterior lateral, impinging specifically on the S1 nerve roots, so it's not as bad as yours was & I've turned down surgery in the hope that I'd heal with a mix of exercise, rest & drugs. Tried an injection along the way too. Am due to have a new MRI, to see if there has been any "objective" improvement, & then it will be final decision time re. surgery when I next see my consultant in November. Well, that's assuming I get an MRI appointment before I next see him - nothing through yet!

I now get pretty bad aches & pains in my upper back, which I'm sure are just muscular, but must be connected with what's going on lower down to some extent - if only because I didn't have these problems before! Feel like I hurt all over ATM - toe arthritis that flares when I have to put my Summer fitflop sandals away & a lingering knee injury are not helping! I don't think my sciatica is quite as bad as it was, though.

pink, it sounds like you're making real progress if you can manage the housework - take it easy though. And it's brilliant that paracetamol is helping.

Pavlov, that must have been a tough appointment. Do the type of infections that have been implicated in post-surgery back pain show up in blood tests? I thought the antibiotic protocol had been more experimental - that they'd trialled it with people with failed back surgery syndrome without knowing for sure there was an infective element, & then seen an improvement. I wonder why some people get flattened, dying discs without inflammatory end plate changes, & others get all the extra shit. Was there any sign of any of this stuff before your discectomy?

Matilda, sorry you had another arrogant arse to deal with too! Struggling to understand just what in your medical history could have prompted him to laugh. Sounds like he's in the wrong job - no empathy or professionalism is a pretty bad combination in a Pain consultant!

Hope everyone else is doing okay.

PavlovtheCat Thu 09-Oct-14 21:49:42

loon yes, signs before disctectomy. End plate inflammation/odema has been present, but not so badly so, since my first MRi in august 2012, a year before. And I have had flu type symptoms before a flare up since 2012. But nothing as bad as it's becoming. It was a clearer pattern and more isolated - I got flu feeling in my spine, in my blood it felt, and a little in my hands, I would get a migraine type headache, feel sick, sometimes was sick, then within a couple of hours would be bedridden with pain, and unable to stand straight. I had spoke to docs several times as I had thought maybe the disc was leaking gunk, which is toxic, and that was causing a flare up of pain, as I knew the disc was prolapsed and had an annular tear in it, but it was dismissed. Definitely, alongside that, the disc was clearly causing it's own problems, and it was all put down to that.

My understanding of the blood test from my own digging about is that low grade spinal infection is unlikely to be seen in a normal level blood test, so I think it's unlikely to show, even if it's an infection. Pain doc mentioned a while ago when I asked about infection and antibiotics that they are not given easily. They are now licences for use, no longer trailing, but at the beginning they were given to lots of people, they saw no dramatic decrease in back pain and so they scaled it back. I have been talking to DH today about it though, and, I am going to call and ask for him to consider giving me the anti-biotic trial. If I fit the criteria for potential spine infection (clear localised inflammation in the vertebrae, localised swelling, flu pain etc) then I don't see why I should not be given the antibiotics. I know there are issues with long term use as the dose is high and for 16 weeks, but really, I am happy to try anything. If it IS an infection, it could be so simply fixed (although there will now be other shit to deal with due to the damage caused). I just don't get why I have to jump through so many fucking hoops.

I have to take my temp every day, or every other day for a while to monitor it, as change in temp is a sign of infection. But, I know I get temp spikes, but only during a Flare Up. I feel like I am on the downside of the flare up and it's not gonna show much, nor is the bloods, they were done too late. Although, I feel fucking terrible today.

And, if it's an infection, rather than another inflammatory issue, why is it not constant 'flare up', but an up and down of pain?

Pain doc said expect flare ups, regularly now. He said I am gonna find I seesaw with pain fluctuation (little drawing to show me!) and got to find a way to manage in between flare ups.

Long. Sorry.

OH and HUGE apologies for missing wine of the intro! blush <slaps wrist>

PavlovtheCat Thu 09-Oct-14 21:50:21

quad so glad to hear a success story. And shock that urgent was 16 weeks! FFS!

PavlovtheCat Thu 09-Oct-14 21:51:43

pink remember, 1) no competition of pain, you don't need to feel your pain is less bad than anyone else's. It's horrible, and real, and 2) actually, severe prolapse is NOT minor. Hope you are feeling a bit better today.

matilda hope you are also feeling a bit better after your shit meeting.

PavlovtheCat Thu 09-Oct-14 21:55:57

loon also meant to say, I get shoulder and neck and upper back pain too, it is muscular, and it's due to those muscles overcompensating for the poor muscle use/wastage/muscle lock that i have in my lumbar spine. Those muscles basically are not moving, they are rigid constantly, and the upper muscles are not designed to take that movement. So, I find from time to time the pain and muscle spasm creeps up and up and up til it's one solid knot. That's when I bring out the diazepam (today).

I am on the hunt for a sports injury massage clinic as I really need some hard rough massage to get my moving again. I should probably go back to physio, but they were so lame last time.

My pain clinic guy has told me to do whatever it takes to keep going, to accept that there are gonna be flare ups, and stay positive, don't stop doing normal shit, and if I need my crutch, use it. So, gonna go buy a black pair today. Rock AND Roll.

pinkkoala Thu 09-Oct-14 22:44:03

Hi my back pain is alot better but the nerve in my bum and thigh just wont go and I have the two smallest toes a bit numb. I take 500mg naproxen a day plus the paras first thing, everything below my knee is fine, as in no pain. Does the nerve take longer toheal than the disc as it was pinched but not compressed, my back is alot more flexible with barely any pain, I used to struggle running a bath for dd and leaning over to check the trmperature, I couldnt put my socks on, had trouble getting shoes on but thats alot better now.

PeggyCarter Thu 09-Oct-14 23:31:09

Message withdrawn at poster's request.

Matildathecat Fri 10-Oct-14 08:49:21

Joyful, welcome aboard this uncomfortable vehicle. That is very hard for you. What meds are you on now and what does,doesn't work? Maybe we can chip in with some ideas.

loon and pav, yes to the massage. My pain can spread far afield from the injury site which is definitely muscular spasm and a lot more painful that it sounds. My physio does 30 minutes release massage before we do Pilates together. She really is good.mits very worth while finding someone good. I will be honest and say the effect doesn't last with me. I had on yesterday and still creeping like an old lady this morning ( and popping tramadol as have another, unrelated hospital appointment ). But it's good at the time and for a few hours.

Also, and i know I keep banging on about it! but the Alexander Technique is all about losing tension so perfect for helping those additional pains we accumulate. Ask if your pain clinics offer it.

pink, you are doing so well. Keep the faith and you will be ok. Any more work issues? Also, we are the benefit queens here if you need any advice.

PavlovtheCat Fri 10-Oct-14 08:52:11

puddle !!!! <hobbles over and gently squeezes> welcome back my lovely. Sorry you still need to be here, but you are so welcome <brew>

got to go, meant to be AT work, not even dressed. Thank fuck for flexi time and no appointments before 10am today.

Quadrophonic Fri 10-Oct-14 10:52:27

Hi guys, funnily enough ive just come across a copy of the MRI Report I had so I'll copy it here

I also have upper muscular back pain and have wondered whether it is linked to the disc problems lower down. Even though the MRI showed that the right side was worse it was the left side they dealt with as it was that side that was giving me the problem - the right was never touched. I hope & pray that it never kicks off as I'm largely ok at the moment.

Matildathecat Fri 10-Oct-14 13:07:18

Wow quad that was some prolapse. Glad they caught it and you don't have too much lasting damage. But yes, I bet it has affected your overall posture and tension and that upper back pain will be linked.

It's the gift that keeps on giving wink

magso Fri 10-Oct-14 16:02:56

Matilda hope you get less bent today. I had a few massages when a new therapist started locally and was charging an introductory rate. It was lovely for a few hours each time. I have dropped hints about dh doing a massage course ( to be my personal massage therapist) but he is not interested!
Joyful what have you found to be useful in keeping you mobile and for pain control? It sounds like you have tried most things. I realise we are all different, and different things will help or hinder different people.
Hope everyone is having a better day

Matildathecat Fri 10-Oct-14 18:36:33

Oh crap.mive had a stupidly busy week with 8 separate medical appointments, three of them today. This evening I have a group of girlfriends coming over. My suggestion. DH away and I can't cope with restaurants,especially in the evening. I've just been getting out dishes, arranging the chairs, generally preparing for a casual, snarky sort of meal with a few glasses of wine and catching up.

But my back has caught up first sad. Lying on my bed, filled with drugs and praying it improves a bit in the next hour.

Why does it all have to be so hard?

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