Back to Back Trouble. The Back Pain Support Thread.

[Matildathecat]

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
www.mumsnet.com/Talk/general_health/2049637-Back-Again-Back-Pain-Support-Thread?msgid=47419209#47419209

And some other useful links and info:

www.patient.co.uk/health/cauda-equina-syndrome-leaflet

We have done the hard work for you and learned about effective drug combining. Using NSAIDs, a stomach protector, paracetamol with or without codeine (it enhances the codeine), nerve pain meds such as gabapentin and/or amytriptiline can all be more effective than simply taking huge doses of opiates. Of course most people won't need all of this but for severe prolonged back injuries this is helpful to know.

Heat, gentle exercise, TENs, medication patches, diazepam and accupuncture, we've tried them all.

So if you are suffering come and join us, were a social lot.

My world is very small without work... I live In tiny town and am a city girl at heart.

Candy - I don't know what some of those terms mean, I goggled truncated coccyx and found nothing helpful, truncated meaning shortened I guess. Can the congenital issues cause the body to move not quite right and so cause inflammation and specifically arthritis?

It can feel overwhelming at the appointments so don't feel too bad, talk to your GP and see if they can explain better. Especially if they are able to get a copy of the scan to point it out. It's easier to understand when you see the pictures.

Pavlov, glad you enjoyed the trip and yay for back spasms easing. Shame you aren't able to tolerate the nerve drugs as I think it's really helping me finally, dulls it down. Was it a specific event you went to?

Sometimes people can be born with L5 fused to S1 - I wonder if it's something like that, candy?

Glad you had a good weekend, pavlov - hope you're not suffering today.

Hope everyone else is okay. Still not getting any pain relief from the pregabalin, but I seem to have been having increasing problems with mid to upper back muscle spasms & pain - so I guess it wouldn't help with that. Probably still on too low a dose anyway.

Queen The inflammation is due to my Rheumatoid, so not unexpected. I think the other two things are just 'one of those things'. Thanks for your reply.

maizie I was quite liking your slightly off the wall posts with.random=equals.signs.and=fullstops! candy how frustrating that these consultants don't bother to explain what things mean. It's not your fault for forgetting, they always seem to talk in a way that is very final and definite, no room for questions, or, I find at least, all my questions become irrelevant, daft almost. Until after I left, and I think 'why didn't I ask that?!' it's in their training so it seems.

queen I think I am going to have to revisit my decision re nerve drugs. I am getting no joy elsewhere and I am starting to lose tolerance to the leg pain again. I can cope a bit with back pain, and I can cope a bit with leg pain, but I just cannot cope with both. And, my back has 'gone' again. Funnily I had a strange headache and the feeling about an hour before it went and did think it might go, but, it was helped along. DS fell over outside the swimming pool and grazed both knees, ankle, palms of his hands. He was distraught, and I had to scoop him up and carry him to the car. He was not easy to carry as he was not helping as he was crying and trying to look at his knees which were bleeding. It was not far to walk, but lifting him from the ground and to the car into his seat was just too much. After the whole weekend camping, and not feeling really bad today as expected (not fab, but not hugely worse than normal, mostly muscle pain and some increased twinges in addition to the normal stuff), and then just normal life fucks it all up , lots of leg pain .

what dose do you take? are you happy with the level you are at? what are your main side effects, how long for them to ease. I might just have to be a bit more patient and try to ride through them.

loon which dose are you on? how long have you taken them for now? I found that amytriptyline was the best nerve pain reliever, but took a good 3 weeks to get some pain relief. I found the first two weeks so hard as I had all the worst side effects and no pain relief. But, it worked so well I might try nortryptiline again. I just can't bear to take so many drugs, I hate, hate, hate feeling full of artificial chemicals altering me just so I don't hurt. I changes me and I can't bear it. But, I need to accept that changes are happening anyway and I can't change that.

loon have you had any sports massage? I now get muscle spasms in my mid and upper back, sometimes it feels worse than lower down, and often now I have a rock solid back right to my shoulders/neck. My GP has said that sports massage to ease the muscles would be beneficial, but that I would need to fund it myself. He said that the muscles above are compensating for the reduced use of my lower muscles and they are working not as designed, working to hard, something like that.

Oh Pavlov, you poor thing. The leg pain is fucking horrible, isn't it.

I'm only on 75mg of pregabalin in 3 doses this week (first week on it), then I'm going up to 150mg on Wed. I think. Then I keep increasing gradually up to 300mg - or that's the idea, according to my GP! So far it's been making me tired & giving me a dry mouth, but I don't feel totally zombified like I did when I tried (a v. low dose of) amytriptyline. I probably will when I increase the dose. I'm sleeping well, even when I go to bed in pain, which is something.

No, haven't had any massage, except getting DH to rub tiger balm in my upper back. And doing the tennis ball self-massage against a wall. I'd love to find someone who could do a really good massage - maybe I should look into it. Your GP's explanation sounds plausible.

The chiropractor I saw said she would not touch my lumbar region but would spend some time alleviating the spasms in my upper and mid area and use ultrasound to ease the tightness, but, I only had two sessions as it was so expensive and she said i would ideally need to go back twice a week for a while as it was all so solid. I was not prepared to spend £54 a week for what turned out to be 20 mins each session max. I might look into the sports massage though, not with any view of being fixed, but just to ease it all a bit, will let you know how I get on.

Should physios not do deep tissue massage? none of those I have seen wanted to touch me in terms of massage, appeared to be too scared of damaging my lumbar area.

My chiro wouldn't carry on treating me after the first couple of sessions, either. He suspected disc issues before anyone else did & didn't think manipulation was a good idea.

I hoped that physio would be a bit more hands on, too. Had been reading Sarah Key's book at the time & hoped I was going to get someone like her! My physio just prescribed exercises - shit ones - & didn't want to touch me, despite his confidence that there was nothing seriously awry. Twat.

loon I have had personal contact with Sarah Keys by email. She was going to use me as a 'guinea pig' for diagnosis at a seminar, which involved being considered for diagnosis in front of a group of physio students (get them to think about possible diagnosis) and offer a treatment plan for me to follow (for them to consider with her guidance and would have involved an individual meeting afterwards. I expect I would have got a good massage from it too! But, unfortunately, I could not make the date offered, as I was not in a great place mobility wise and could not travel such a sad thing, it would have been fab. She sounds lovely from my contact with her. She is very much anti surgery unless there is a clear reason for it, such as CES or vertebral instability isn't she? I love her optimism that almost all back damage stems from something specific and is largely disc related unless there is a specific condition such as RA causing the damage, and if it's not RA or some other clear disease, it can be rectified. It all made sense, it opened my eyes to possibilities of recovery, but, it also made me realise that what she talks about in terms of recovery is virtually impossible without giving up work, not looking after the children, and putting every single ounce of yourself into recovery for several years. It's just not realistic, but I learnt so much about the spine and self management from the book. Would love to have met her.

Wow, that would have been great, pavlov. Sorry you couldn't do it.

I was reading something on her website about surgery - specifically discectomy - the other day. She didn't seem to be against discectomy per se, but gave cases where it wasn't a good idea - eg. if it's not totally clear that a prolapse is symptomatic. Interestingly she says it's unnecessary if the disc has actually ruptured, as she claims that's not a bad outcome with a bulging disc (akin to when a boil bursts) & the body reabsorbs the nuclear material fairly quickly.

She talked about posterior lateral bulges (like mine) where a fucked disc is pressing on nerve roots at the back, as a case where discectomy can help. What I found surprising was that she said it can be better to take out all / most of the disc, not just the bit bulging out. She says that just reducing the amount of nucleus can make a bulge worse - lowers the intradiscal pressure - & thinks that's a factor in the frequency of re-prolapse.

I've done quite a lot of her exercises, & sometimes really believed the back block routine was helping. But my consultant was adamant that my L5/S1 disc is beyond regeneration. It's totally dried out & thin (though must have some nucleus, or it wouldn't be prolapsing) & he says it's had it. I do worry though that if he shaves off a bit of it, another bit will make its way out to the disc wall, as that's obviously in a bad way.

Pavlov - I feel ok this time. Maybe because I feel more sure about the nerve pain being real after tuning into it for a while. I just went straight into the 300mg three times a day. It was when I went to 600mg I found it more difficult but I'm sure it's helping now. Overdoing it and carrying small but heavy people isn't good, I'm sure I'm better now for not doing so much. It went totally into bad spasm when DD1 broke her leg and I had to carry her, especially as she had just been toilet trained. I do wonder about you sitting at a desk for hours, I know I struggled badly while pregnant at work. I'd be too sore to work the next day. It's such a shame and I worry about the prospect of going back to an office job.

I found massage helpful but suspect I'd need it regularly to make a longer term difference. It was £47 for an hour. I will google Sarah Keys.

So surgery sounds like it's definite after the GP insisted on calling the on call neurosurgeon after I asked for my urinary symptoms to be reported to the neurosurgeon I am due to see, they omitted this from the referral. But they don't think the disc is causing the dodgy bladder which is kinda bad news as I have something else unexplained going on. But yay surgery is likely and I can relax a bit - seriously the GP telling me they wouldn't operate made me a bit crazy because I know after so long and after so much physio and osteopathy I am unlikely to get better any other way. I am going to poo myself about surgery but it could change my life! I'm praying I will be done and recovered in time to do the school runs. Is that totally unrealistic?

I still have to watch out for CES signs and be careful. I'm wearing support knickers which do help and they make wearing the SI belt more flattering which is a bonus. Do any of you recommend any other support undies? These are high briefs from M&S so no pelvic support just back and tummy. I do need to lose about a stone too so another bonus if they slim me down :(

loon i loved the idea of the disc regenerating, and for a while felt that it might be possible, but, also read that one if the biggest things that help regeneration is restful sleep, as that is when the disc does it's regeneration. Alas I sleep horrendously. Typical, as pre children I would sleep up to 12 hours a day, could quite happily go to bed at 10pm and sleep until 10am at the weekends without waking. I have always loved my bed and its like some kind of torture that on the one hand I get to spend much more time in bed than I ever thought possible yet on the other hand I sleep so so badly now. Always said it's because I have my store of sleep already

I have, tbh, stopped looking up the details. This time last year, I knew so much more about things, I researched everything, I absorbed it like you did, then, as time has gone on, I realised it's all fucking pointless (for me) as it is doing me no good, and to some extent has probably added to my stress as I feel sometimes that I know more than the hcp who work with me, and certainly they never bothered to share their knowledge with me or help the issues I have faced, and it just made me feel really frustrated and angry. If I didn't know this stuff, I would not feel so like I have been stuck on the scrap heap so I have stopped trying to find the answers. I have even lost the will to seek the surgical second opinion. It just all feels so pointless. So, I am just plodding along as they wish. Not that it makes me any happier, just feel less like swimming in treacle.

queen driving is out for 6 weeks, or, until you can confidently drive and be confident that you can do an emergency stop. I went with DH to somewhere quiet to do the emergency stop before I drove to check I could do it. Walking is encouraged within a couple of days, but literally, little gentle distances, so, at first, to the loo and back, then around the house, then, into the garden or a little way up the road and back, then build it up but with lots and lots of resting as well. However, I went to DD's sports day 6 days post surgery, didn't drive, got collected by a school friend's mother, we had a coffee then I went to the school field, mostly stood, but also got a chair for when my legs got too tired, so walked 2 mins from car to coffee shop, and then back, then 2 mins to field and back again, and to the loo and back while in sports day. That was quite a lot for less than a week, but it felt fucking marvellous as although I was walking slowly it was more about being scared of doing damage than actual pain, as that was mostly not there at all. Sitting is probably the thing you will struggle with the most, not necessarily the sitting itself, but getting into and up from sitting. You will/should get given a raised toilet seat to attach to your toilet for that reason. I found turning difficult for a few days, so very robotic.

I don't sit too much at work anymore. I have a hydraulic/electric desk that moves up and down, so I can stand or sit as I need to. Its actually bloody great and has probably kept me at work longer than I would otherwise have been since my last sickness absence. I tend to work standing for the most part as sitting hurts my sciatic nerve, stings down my legs, and more recently my foot and butt goes numb if I sit for more than a few minutes, but found last two weeks really rough as I couldn't stand straight so standing didn't help either! I can walk around as much as I need and have all my files at chest height so I don't have to reach apart from legal files up high which I rarely need and my admin gets them when I need them. Now I am on the floor of the staff room and my desk is literally opposite, I also occasionally sneak in and lay flat on the chairs - those typical staff room style ones, fabric and can be pushed together to make a sort of sofa.

when you are ready to return to work, you can get ask for a standing desk. there is a lot of research to suggest standing desks reduce the risk of back problems and I think a lot of employers will jump at the chance to reduce their sick records, given how much time off work is back problem related. There is funding from the government for work based disability solutions, larger businesses often have a department or member of staff that deals with this aspect of business, but smaller businesses can utilise outside agencies to help them support their disabled staff and those agencies will access the funds so it doesn't actually cost businesses anything to make adjustments such as desks etc.

meant to say queen good that you have some clear idea about the surgery in my post, even though it's not the best outcome, its the best outcome in this situation, in that they believe it's fixable. It's worse when you have no clear idea of whether surgery will work, or perhaps it won't work. Although best outcome is to be told that in a couple of months, it's gonna spontaneously heal, like our tongues do!

hello everyone. I had a total heaving weepy melt down this am and had to turn back on drive to work. It's all too much...... weeped on dp for a while, put the kids cold things on my eyes, worked from home for a while, then back to they office I went. I had an important meeting.working from home for the rest of the week. pain clinic spine injections are on Friday. gp as well this week as my iron levels are too low and I'm getting palpitations panic attacks etc. problem is it's most likely anemia of chronic disease and no easy fix. rheumatologist next week they absolutely have to get me on the next level of arthritis drugs or I am absolutely going to have the nervous breakdown that has been pending the last few months.I am literally hanging on by my ragged bitten finger nails.....

Pavlov so glad camping went relatively well. please don't give up on second opinion. good idea to retry nerve drugs though.

matilda I'm so on your behalf and queen I'm still worried about you. loon are the nerve drugs helping yet?

I am reading every day and wishing positive vibes to everyone. we had school summer fair and ds birthday party this weekend so it's probably not that surprising that I lost it this am

Oh denial ! I am so sorry you are having such a shit time , glad that you came home, sounds like you needed to, shame you couldn't just stay at home, but well done for working from home this week, are you ok to do that? should you not just rest for a few days? Is it likely the rheumy team will give you the next level meds? Are these the meds they said no to, then yes to? You still not had them? And, can they give you iron injections, like they can with some other vit deficiencies, to quickly boost your levels before you address the longer term stuff?

the bizarre thing is that I have enough iron.my body is telling the cells not to release the iron as it has some involvement in inflammation or something complicated like that.so supplementation is apparently a bad idea and treating the underlying inflammation is the answer but we've been trying that for two years!

yes it's the no then yes drugs.I don't quite know what's going to happen.I've pretty much lost faith in a team that I did really trust to look after me.

I probably would be better off not working /signed off but I'm the only one in my authority who can do my work so if I'm not there it just piles up and customers get upset and I just get more stressed trying to sort out what they need when I come back and it's a vicious circle.

at home I can plod /rest /plod. mind you off the gp suggests a period off I'm not sure I will argue add much this time. but I'd need to hear it from them to believe I'm allowed??

Pavlov thanks for the info on recovery. I can't wait for it to be definite, terrified but excited. There's no way it is going without surgery, unlike when I was 16 and it was no big deal at all.

The in laws offered cash to pay for help but I don't really want to do that, I want my family to help instead. The in laws can't help and probably wouldn't want to if they could so that's why they are offering to pay. Maybe I'll ask now as ideally I will get it done within a month of the app, is that unrealistic? My family can do two weeks each hopefully, DH, my Dad and my sister. My Dad will be last as he's the laziest.

As for work I can't imagine a new potential employer being happy about that, sadly. Well maybe the public sector who have favourable recruitment policies for disabled candidates. That's if I can class myself as disabled.

Sorry things are tough Denial. It is normal considering all what you are going through. I presume something like spatone for the iron is not going to help.

Physically I am feeling ok. The patch and gabapentin with the support pants and SI belt followed by a shower. I'm almost touching my toes! Well about six inches away. Been doing my pelvic tilts while typing too. Going to do my sit up and downs now, with better technique.

I had surgery 3 weeks post neuro appt. I asked to go onto his cancellation list, and so I was called the day before. They actually offered another one like a week after, but i couldn't take it. I made sure before going on the list, that if I chose not to take the date offered it didn't bump me back down the waiting list, and it didn't. So, first offered after like 10 days, then missed an offer as I was away in a yurt in the middle of a field in the middle of nowhere, then they offered it a few days later and I took it. I was literally called at 11am and said 'can you have the surgery tomorrow? yes, ok, will call you back with details, then that afternoon was told 'you need to be in at 7am at so and so, and given a list of things to take, not to take etc, when to stop eating etc', 24 hours later from that afternoon call and it was done and I was on the ward. I was quite pleased, as I had just taken that week off sick as the pain was too much. So, if you are happy to plan childcare and other details with the possibility of no notice, then do cancellation. I was told that the 'normal' wait was 2-4 months. I was not 'urgent' despite having clear nerve compression, on MRI and symptoms wise, but had already waited 4 months to see the consultant, and a month for the referral to consultant to take place from the spinal team after seeing the prolapse compressing the nerve in the December.

In fact, it's almost 1 year since my op - 21 June 2013 I think it was. Shame I am no further on really, just shifting of pain to a different leg and more stuff going on. But it's not always like that.

queen and re employment, yes you are 'disabled' in employment terms, you will 'qualify' even if you 'recover'. to be honest, if I apply for another job, I not sure I will tell them I have a back problem until I am offered the job. I will tell them the moment they offer it, but not sure if I will before that. And then, once the job is offered, they are obligated to follow the Equality Act (of course they are required to do so before that time, but we know there are ways to avoid compliance), which requires making adjustments such as appropriate chairs, desks, even as far as putting in a lift if there is not one, a ramp or rails. The law states that you are not obliged to disclose your disability status, either at application, interview, or during your employment. Of course not doing so means you are not protected by Equality Act, but neither can they then not employ you because of it! If you do disclose it before interview, I think, but not sure, that you have to be offered an interview as part of the positive discrimination recruitment aspect of the EA, if you meet the other selection criteria. Although, I say I won't disclose, it will be quite tricky to hide it at the moment

I do suspect that my willingness to share my knowledge or access to knowledge on this front has helped me considerably.

I do suspect that my willingness to share my knowledge or access to knowledge on this front has helped me considerably to keep my job and have appropriate adjustments made - I meant to add that bit before pressing send!