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

msdj you have my absolute sympathy. I'm three days into a flare up of sacrolilliac pain arthritis related i think and am losing the will to live. i can't imagine years of this level of pain. if I don't get back to work soon I will go mad. today in a between drug doses low I struggled to wipe my arse #havehadbetterdays

Hi to everyone. Just had my nerve block injection this afternoon - took the radiographer quite a few attempts to get it in. Both my legs feel like jelly now & have slightly worsened pain in the right leg, & some unpleasant nervy sensations in the left leg (never had a twinge there before). Those of you who've been through this - is this fairly normal?

Radiographer said I could carry on as normal but I wouldn't fancy walking anywhere at the moment - luckily I don't have to until tomorrow morning. He also made lots of confident claims about how the procedure is very successful for most people - which doesn't seem to tally with the experiences I've heard on this thread.

Msdj, sorry you're suffering too. Sounds pretty bad if you can't walk or sit (standing still is worst of all for me!) & you're already on lots of meds. Have you actually seen a neurosurgeon? I'm guessing you were referred after you had your MRI? Has surgery been discussed? Re. heat packs, matilda told me about the Wilkinson's ones which are quite a bit cheaper than the cura heat ones I'd been using & do the same job.

No I haven't seen anyone other than my GP and the pain clinic at my local hospital. They gave me Pregabalin which made me woozy so I stopped taking them. They also arranged the spinal injection. After 15 months I have had one MRI. One spinal injection. Thousands of tablets. A few months of physio and one lot of acupuncture. And now my employer has cancelled my contract as I just couldn't tell them when I would be well enough to go back.

Will look at the wilko patches. I could easily use them everyday. I use the thermacare ones but at £5.99 for two it can get expensive using them every day x

Forgot to add. Pain clinic referred me to a private hospital for surgery on my disc. But the hospital said my pain wasn't coming from the disc so surgery wouldn't help. Another wasted journey

So sorry there is a lot of increased pain at the moment, and welcome to newbies and sorry you are all here.

I will post more later to offer support, advice and , but having made myself sick eating too many the whole enormous packet of wine gums and a pint of pepsi, high pain levels and a shit day at the pain clinic I went to bed and stayed there sulking and suffering from sugar rush. So now I best vaguely attempt to cook dinner as I was meant to yesterday.

I am also going to be spending lots of money to cheer me up, and fuck this stupid fucking back, I might even buy myself some heels. Fuck it. OK, DH will probably talk me out of it, but I am Fed Up. So I may need all your advice and cheering on as I make my purchases. I can't afford it, but, did I say? Fuck it. I am not drinking wine any more, don't smoke, don't do any hobbies (except still paying for the gym) so this is my current vice. And I got my letter confirming I will be a civil servant as of 1st June. So YEY! to not being made redundant any time soon and lots of hoops to be jumped through before they fire me on medical grounds. Worth celebrating eh? may be in order.

matilda hope you are ok lovely. Thinking of you after your assessment today etc.

loon pain clinic told me I can't have the injection as it is NOT successful on a huge amount of people. Although, he was talking about the length of time I have had nerve pain, the longer the pain, the less successful it is, risks blah blah blah and what he meant was he aint prepared to waste money on something that might not work enough to get me to piss off I hope it does work on you though, I think increased pain for a short time is common.

pavlov are you going to frame the letter?? :-) it does seem like a shitty week all round roll on the weekend

Loon - I had a spinal injection but don't think it was a nerve block. More like a steroid one. But I was very shaky afterwards. Had to lay flat for an hour and a half afterwards then I went home but was still shaky and felt uncomfortable where the needles went in. My pain has gone worse after it, but I over did it. Just listen to your body. If it says rest. Then try your best to do just that. Things should soon go back to normal x

loon I hope the injection works.you see I don't think they should be denying anyone trying something that might work. unless the risks are high of course. pavlov did you point out to pain clinic that the reason you have had pain so long is because of the many stupid delays in your treatment grrr I'm in a fuck them all let's set up a protest group mood today which is amazing considering how much codeine I have taken.....

Sorry to hear of all the pain. Denial - I have had the difficulty wiping my bum thing when it's bad too. Getting off the loo has been a problem too.

Msdj - I have thought I fit SI joint dysfunction too. From what I have read there may be a link with disc herniation and pain in that area but nothing definitive. I will ask when I get the referral and let you know. The most painful part for me is that area so I was surprised it could be caused by the discs, well the pain dr suspected a disc issue on presentation of my symptoms and pain on examination around the pelvis.

I'm not too bad right now but feel stiff with mid back pain which is unusual and how hard is it to not do the stuff we shouldn't be doing? I'm trying to get stuff out to pack for our little holiday, plus lifting to change bums or wrestling small child into her coat/shoes/nappy/pjs/cot. Smallest person also stood on the top of my foot while wearing boots yesterday, it still hurts.

Pavlov - do they know why you are still in pain? Any more scans? Go treat yourself. At least being a civil servant offers you extra time being employed and paid sick leave so less financial pressure. I'm an ex civil servant, took redundancy when on maternity leave, left when the Tories came in, just as well as I don't think I could've stomached working for them, particularly Gove.

queen dp has had to help me on and off toilet a couple of times in last few days but I draw the line at bum wiping! he had to go away for work tomorrow overnight.that's going to be interesting

Thanks all. I have had a lie down & DH cooked supper so I'm being pretty lazy. If I'm like this after a sodding injection, though, God knows what I'd be like after surgery!

msdj, I'm a bit gobsmacked that you weren't referred to a neurosurgeon, at least once you'd had the MRI result back showing a prolapse. How do they know it's not causing the pain? The leg pain & pins & needles sound like classic symptoms of nerve irritation / compression. I've been offered microdiscectomy for my prolapse (L5/S1) but am trying everything else first - especially as I have high functioning spells where I can walk with only minor pain.

Interesting about the SI joint stuff & possible connection with disc problems, queen. My GP & a chiropractor I saw early on both said my pelvis rotates to one side, which I'd spotted myself, & radiographer today said that was why he was finding it hard to get the injection in the right spot. Originally I thought SI issues might be the cause of my pain - it started after I fell on my arse - but once I got the MRI results the focus has been on the disc prolapse. I didn't know the two might be linked. My MRI report said my pelvis was "grossly normal", whatever that means.

Pav, I thought the whole point of pain clinics was that they were able to try lots of stuff to see what might ease your pain! Didn't realize everything was still being costed & you were only offered the cost effective solutions. How high are these heels you're going for? I've found I can only manage just above 2.5", but anything more & I do feel a bit out of alignment. Don't get too carried away .

Sorry you're having such a bad flare-up, denial. Sounds grim. Not that having to wipe my bum is an issue for me much ATM with all the codeine I'm taking! Have lactulose but it's not doing much. Have been cutting out grains & bread with the aim of shifting this half stone I've put on since this started, but think it's slowing up my digestive system even more.

queen retrolesthesis or something like that, backwards slip of the l5/s1 vertebrae and 'probably' caused the prolapsed disc. It's 'probably' moving and irritating the nerve on occasion, movement causing back pain and irritation of the nerve causing the flare-ups that I struggle to get under control before the next time. Sometimes I have bearable pain, sometimes I can barely walk. The advice I am given varies depending on what HCP I am talking to and what financial incentives and policies they have at any given time which links into the whole reason I am frustrated and annoyed and angry about the whole bloody thing as none of what I am being told fits with what the other one says and I am fed up with being treated like I am stupid

This pain clinic guy, who I have seen before, said that I should not pay too much attention to the diagnosis of retrolesthesis as 'lots of people have this and it doesn't always cause pain' and that may be coincidental to the pain I have now. So. He is saying that we have HUNDREDS of bones in our body, I have ONE fucked up bone. Seperately to that I have ONE clear location of pain, which started before I knew I had a problem with this one bone, and it just so happens to be in the same location as this one damaged bone. and my symptoms just so happen to match the symptoms of someone who has retrolesthesis that causes pain, AND a prolapsed disc which can occur with a moving retrolesthesis, but that happens to JUST BE COINCIDENTAL. FFS.

You I said no wine any more. I lied. I mean. Not Very Much. But tonight, on a school night. I am having two big glasses.

Pavlov - obviously I'm no expert but doesn't some sort of fusion or other stabilising surgery exist for this? Although I've heard fusions can cause SI joint dysfunction - something I read when I thought that was my problem. It is one small bone in a really important place! At least they could offer some form of stronger pain killer. These butrans patches and strangely methadone (both taken by heroine addicts to wean them off) are meant to be good for nerve pain. And yep, it can be pretty obvious when drs are reluctant to refer, preferring to protect their precious budgets and it is their delaying that can cause irreparable damage.

Loon - Yes I also had my pelvis pulling up on one side, I thought it was muscle spasms. I don't think they can see SIJ dysfunction on an MRI anyway, isn't the only definitive way injecting the joint? I spend the nights I can't sleep reading research papers, well the summaries. I'll post anything I find that's relevant. I have found a fair bit of evidence that surgery has better outcomes than conservative management, even though the worst cases are the surgical candidates. More commonly found advice suggests the outcomes are the same grrr. Keep eating fruit and veg, coffee helps and sometimes sugar free chewing gum!

Loon I've had the same today. In agony. Had nerve block on facet joints of L4, L5 and S1. Could cry it hurts so much. At the time of the injection it was excruciating. I asked why it was so painful, surgeon said needle was longer than his pen and that he was hitting bone with it. Owwwwwwwwwwwwwww.

Oh God, lucjam, that must have taken ages! You poor thing. Hope you've got plenty of drugs there.

Ladies, what a day for us all. lucjam hello, I had exactly the same procedure three weeks ago. Never again. Worst pain of my life and that's saying something. The next couple of days I was okish then had a huge flare up which lasted a good week. Sorry, that's probably not what you wanted to hear.

The only injection that's ever had any effect was the SIJ. It didn't last but it did help.

Sorry I can't respond to everyone. I'm so sorry you are all suffering but god it's good to know I'm not quite alone. I've had gabapentin, two cocodamol, naproxen, my sr tramadol and two glasses of wine and it still kills.

pavlov my friend. Shopping is the way to go. I just bought Yoni red patent shoes by the fab Fly. I'm a five but four fits. I'm not a red patent girl but they are so nice with my skinny jeans I know I'm too old.

Girls, stay around and support one another. This is a tough game. One you never signed up for .

queen surgeon has said he would fuse the spine at l5/s1. Then last appointment said he would not fuse as statistics of improvement were not great, but has done another X-ray to check movement, MRI this week to see if further prolapse. My GP wants second opinion and has referred me for that, and. And. Yesterday I found out why fusion is not happening, which I suspected from other conversations before fusion was mentioned by this new surgeon. "This hospital is not supportive of spinal fusion, generally" chucked into the conversation. They are not fixing me because of policy. The surgeon has probably had his knuckles rapped for doing too many, promising them when "they don't support fusion". I had always wondered why I had initially been told this hospital did not do fusion but then my consultant then did.

And, the reason the injection allegedly won't work is due to the time I have had nerve pain, over a year and pain is harder to get rid of now .(except, I had a huge break post surgery in 2013, doesn't count it seems) and the reason it's gone on so long this time is because they have bloody stalled in giving it to me while waiting for this surgeon to make his fucking mind up about fusion.

Sorry for my moaning, I had promised to be helpful and give advice this evening, not winge. I am so fucked off with it all. My GP. He is great, he has said next steps are morphine options, and he will happily prescribe me what I need. my nurse friend said it could either be butran or MST? which is a slow release one as well. But I am not ready for that. That will be the end of my job. I can take stronger painkillers than I am on now but i can't work on them. I take 50mg slow release tramadol daytime, along with naproxen and paracetamol, it barely takes the edge off, but doesn't even register for side effects. Then top up with 30mg Codiene and paracetamol and naproxen when i finish work as I have the little ones to look after, then same again before bed. Tramadol wires me at bedtime so a nono when working, can't do gabapentin etc as side effects to strong for work. Sometimes when muscles are very upset I take diazepam.

And, typical, MRI cancellation on Friday when I am coming out the other side of a flare up.

Sorry for not responding to all your posts, I have read them, and I am thinking of you all. Everyone is having such a shit time it seems, and it just seems like we are constantly waiting through medical treacle continuously, fighting every way we can to get some help. I am reading, just, well I have so much to say and don't know where to start as I feel so cross for everyone, fit our bodies not being kind to us mostly.

On the plus side, my desk at work is fucking awesome and everyone is properly jealous. I do need a sign saying 'welcome to this floor, I am not your fucking receptionist' and some boiled sweets and a silver embossed name plaque, as it is huge! I am going to get a mug that says 'I fucking love working in an office'. I did want the one that has a grumpy owl on it saying 'fuck off' and Irritable Owl Syndrome underneath but at least one colleague has IBS and it can be quite PC at times, so might get a bollocking.

I am too tired to shop. Bought a dress, that's it.

A dress is good.

Please can you pm me the details of your desk? I need one. Is there any way you can very slowly tut rate the doses of nerve meds to get you some relief? Also, tramadol fucks my sleep so I take my sr 150 at 11ish then top up with cocodamol later. That works ok. Well as ok as it gets. Like you, not ready for morphine.

Night night, everyone. Sleep well.

Where did you see the Irritable Owl Syndrome mug, pavlov? I want one. No online shopping for me tonight though - off to bed now. Hope everyone gets some sleep.

The Poke. I will find a linky for you.

It's in here somewhere amongst all the other stuff, got to browse as there is some funny stuff there. So many mugs that I would love for work but perhaps not suitable. Shame!