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.

He went through all the different scans of the most recent MRI, and said it didn't show anything significantly different to the one from December. OK, I said, but the one in december showed two bulges, what about those? I asked. Well, he said, they are 'not that that bad' and on he went about the statistics of the population having asymtomatic bulges and anomalies, and so not necessarily means that they are the cause of pain. He also did the whole 'hmm, but, well, I am not really an expert in interpreting this type of thing, I am not looking at it with a surgeon's eyes', every time he saw a scan image which showed the bulge clearly, and skirted to one that didn't show much, or where it didn't bulge. He did say to me later, that he pushed me earlier in the appointment to check my level of positivity, as it's really important to have a positive outlook etc, but then went on to actually find images on MRI and the x-ray that showed evidence of issues causing pain. But he said to me 'i can't see anything seriously wrong, there is no major issue to worry about'.

Confusingly, he started his appt referring constantly back to fusion and why it was not a good idea, and I had thought this was a pain clinic appointment (it was), but every time I asked him something he kept saying 'but, fusion won't help that', and I was like, I know, but what else can help?! I had this confusing conversation with him for like 15 mins before he said 'so, I need you on board and be confident we can move you forward, but you need to move forward away from surgery if the neuro comes back and still says no surgical route. I really think we need to be looking at a pain management route' and I was like but, that's the whole fucking point of this?!!

He has said that end plate damage does cause pain and it can cause nerve pain. But then skirted straight over to talk about how a surgeon won't be able to fix that. I know! He showed me the images of the MRI which showed what even I could see was horrendous end plate damage. Even he acknowledged that the disc was dry and was very unlikely to be doing it's job as a 'shock absorber', but absolutely refused to say, you are clearly in pain, it's evident from what you say and what I see confirms it. He just kept referring back to how I need to be on board with him, to remain positive and to not stop doing things.

DH said the same thing re how did I not lose my temper. I normally feel quite passive in appointments, but I challenged more than I normally do, and I felt my anger rising. I made it clear to him that I am very positive for the most part, and if he spoke to my GP he would get evidence there.

He was so all over the place. This is confirmed from the appointment:

L5/S1 End plates are damaged, quite badly (S1 in particular) and are very inflamed. End plates can cause pain.
Vertebrae L5/S1 is out of line, more so when I bend, and the space between the vertebrae is diminished when I bend, with no/little disc between the very ends of the vertebrae (even I could see that). Vertebral instability can cause pain, especially on movement.
Disc of L5/S1 is dehydrated and bulging. There is very little if any cushioning (shock absorber role). This can cause pain.

This is confirmed from the images of someone who has not much idea what he is doing.

Yet. Despite this being clarified by him, the pain is due to 'hot-wiring' (the actual words he used), not from the issues above. And my insistence on trying to find a surgical route (except I am not, I want a proper explanation of the decisions made and be sure the reasons are the right ones) is only likely going to make this worse. And I probably depressed, which will make things worse.

Oh. And apparently the surgeon who I am currently under, Mr Arrogant, he loves surgery and is always keen to operate, so if he says no, he is not being lazy as he would jump at the chance to operate. Apparently. Yeah Right.

oh. And I have schmores nodes (sp) on several of my lumber vertebrae. I asked what they were as they are quite big on the MRI! Inconsequential apparently. I remember reading that I had them on my first MRI, but forgot all about them until I saw them today.

tough love those dresses! Good for you. And good that they are linked to DH's account

matilda how you feeling today? Any better control of the pain?

he kept saying 'hot wired' and 'ultra sensitive' 'on high alert'. And he also, in his attempt to 'engage with me' likened it to an intruder alarm that will go off without being triggered by an intruder (his attempt to link it with my job, very badly!). He confused the hell out of me, but I took it all to mean that my nerves are now malfunctioning, or conditioned to provoke pain without the original stimuli. He talked about my body reacting to it's environmental surroundings and trying to interpret, but the messages going to my back (he said for him it would be his neck, as he had a neck injury many years ago and he still has neuropathic pain which he manages lucky him) and it reminded me of a link someone send on FB (one of you lovely ladies, can't remember who, Maize perhaps?) of the Australian neuroscientist talking about a similar thing and I wondered if he had watched it or had similar training

but, really, I am not entirely sure what the hell he was saying, other than my impression was he was saying it's not real, the cause of it is not real. And that's wrong. I completely and utterly disagree.

And then he offered me the fucking injection, thinks that it's a good idea

k, so I googled 'hot wire' and it means to start a car without a key. Simply. So, literally translated, is I guess, that he is saying 'pain without a cause'. ?

Anyway. I will shut up now.

Yes, I think that's exactly what he was trying to say, pavlov. And obviously nerves can behave like that, & produce pain when there's no longer any corresponding injury / reason for it. So the pain IS real but, as you say, the cause isn't.

This is just fucking bollocks, though, when you're faced with someone with two disc prolapses, end plate damage & a retrolithesis (however it's spelt!). Obviously he can't divide up all the types of pain & say, okay, this bit is caused by nerve impingement, this bit is inflammation, this bit is coming from the slippage: you weren't expecting that.

But just because the picture is clearly complex - in fact, precisely because it is - there's no excuse for someone coming out with such reductive, simplistic bullshit as to say that ALL your pain is coming from over-sensitised nerves. It's just not possible to say that, & it really wasn't his job to try. Really cross on your behalf.

Even if it does come to the point where you're told there's definitely no surgical option now, & you can only go the pain clinic route, & the picture's so complicated that it's impossible to work out what's causing the pain - it STILL wouldn't be correct to put it all down to over-sensitised nerves.

I got the hot-wired nerves stuff from bastard physio. as well, when he wasn't trying to tell me it was all muscular or referred pain & wasn't neurological at all, that is. Why can't these people realize that most of us would rather have an honest "I don't know what's causing this" & a bit of humility than someone trying to sound authoritative while spewing a load of inconsistent, make-it-up-as-you-go-along shit.

loon with there was a

Talking of radiographers, we are missing losty hope she is ok. Will PM her.

Thanks, I'm bit better today. Had a quiet day other than purchasing some cushions and lounging outside. I'm reading my Alexander Technique book and trying to understand the concept. Makes sense, I think.

Reading and sighing at everyone's ludicrous situations. Keep going, everyone. Keep going.xx

told off by gp (nicely "you are not super woman), signed off work for initial two weeks. offered anti depressants and counseling. As I thought can't treat the anemia add it's probably inflammation related. now to tell work. I'm relieved to be honest think I scored quite high on depression questionnaire

Hey denial you are doing the right thing and need to take care of yourself. Which anti ds have you got? I hope they work for you, they can be rough with side effects which are supposed to wear off after a few weeks. They haven't worked for me but I know a few people who've had great results. Counselling can be fab if you get the right person. Our area offers CBT groups for people with long term conditions and pain clinic offers more specialist pain counselling. I haven't tried them yet myself, just the normal group CBT. Depression is tough and I'm sure pain can contribute significantly to the extent I'd be a lot less depressed without it.

I wonder if I can be signed off as sick.... I'm pretty sure I'd be off if I was working. It will be good to take the anti ds while off so you can get used to them and allow the side effects to lessen before you go back.

we agreed two weeks rest then we would discuss anti depressants and the counsellor is private so still need to see if I'm covered. I do have amitriptyline from the pain clinic which I haven't tried yet because I didn't have time to sit out the side effects etc. might start that this week

queen there really should be a scheme whereby you could get a break .I'm lucky my kids are in school.

like all of us here I have no doubt that I'm depressed.I would much rather clear and swift treatment of the arthritis than more pills to treat the side effects etc. I just need to keep chanting rheumatologist next week.at least I don't have to balance work and injections and appointments.

I'm going to actually read the book the pain clinic suggested, read the book about diet and arthritis I ordered aeons ago and sleep.

Thing is where do you draw the line between very, very pissed off and depressed? It's natural to be very pissed off by severe and relentless pain. Maybe try a couple of weeks with a LOT of rest and get some sleep and possible pain relief with the ami and see how you are then? The ami side effects do settle and if you increase very slowly might not be as bad as you fear.

Just received copy of the letter from Dr Stupid Pain, written to my GP after the hope less appt last week. it's entirely obvious he hadn't even looked at the ATOS request or my very concise covering letter because he wrote that he couldn't provide the GP with a Fitness to work assessment as it was beyond his expertise. NOt FTW, not GP who asked. Only needed a statement re my dismal prognosis. I am going to complain so loudly after this is over. What a C*. I never use that word.

Sometimes it's the only word that will do, matilda. What now? Dr Pain is evidently either incompetent beyond belief or he can't read. He should have written that bloody letter when you first asked for it, there & then in his Clinic. It would have taken minutes.

I never really got why ATOS insisted on having the letter from him, rather than from your 2nd surgeon, who obviously has much more expertise & understanding of your prognosis. But then ATOS sound shit beyond belief too.

So sorry that these fucking idiots keep letting you down so badly.

Although I obviously hate ATOS with all my heart, in this instance I do understand why they asked him. Because he is/was( def was, I've sacked him) my consultant at the time of needing the report. The surgeon had discharged me to chronic pain management over a year ago. Trouble is with these pain guys is that they don't care at all about the nature or origin of your pain, they like doing injections and the sexy stuff in theatre scrubs. If you put him with a gun to his head he would not have been able to tell you the first thing about me because he had never looked at my notes or asked. He had never actually read any of the letters I sent him or those of ATOS. Now just praying that the surgeon writes a really dismal report and ATOS can't argue with it.

I'm running out of energy with the whole saga. When I'm finished with applications and claims I think I might have a party.

I should have had my Atos assessment in January. Am still waiting 5 months later!! Same as PIP I claimed for that last October and only just got a reply!! I hate waiting. It's very stressful constantly checking post or making calls to them. It costs a fortune too

msdj, did you actually have an assessment for your pip? Or was a decision made from the form alone? Please do contact your mp again about kicking ATOS up the arse about your ESA assessment. If you read the message I sent you you will see that ESA support group applications have massively increased.

Get angry!

Hello! Man am I pleased to have found these conversations! I am new to mumsnet. I am not yet a parent, nor pregnant, however I am seriously struggling with a severe back problem and have been wanting to try for a baby for a year. I have a similar story to many of these posts. I have had lower back pain and sciatica for over 10 years with 7 years of one off, very severe back spasms which paralyse me for a week.

I am a primary, Early years teacher and am currently off work as I have now been suffering with the longest episode of chronic pain which the worst was for 2 weeks and now have v bad sciatica in both legs. My work and I are frightened incase being at work will make it worse. They have been very understanding, thank god!
They finally gave me an MRI in October last year and I have been diagnosed with degenerative disc disease L4 and L5 too. I was referred to a pain specialist, who passed me onto a Kings hospital spinal surgeon.

This all took many months of waiting. I finally met the surgeon yesterday, thinking he would give me a positive answer. However he doesn't want to operate, but is concerned as this has gone on for so long and I now have bilateral sciatica (down both legs). I am now booked for another MRI (who knows when?) And what will come of it?

I have been on a cocktail of different meds cocodamol, diazepam, diclophenic, naproxen and now am on gabapentin.

Most of which helped but I still have a lot of pain. I have a very good osteopath who, now I'm through the worst of the spasms, I can book to see.

I was told by one of the many specialists that getting pregnant and carrying a baby would be very dangerous and I should wait to have surgery and then think about getting pregnant?

Very confused and fed up! I typed disc herniation and pregnancy into Google and you guys came up...I'm sorry to hear so many of us are going through this, but it's good to know you're not alone!
I wish you all luck and good health.
xxxx