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

ms you are completely entitled to make a bloody fuss. You must in fact. They will happily let you continue being doped with a billion meds if you don't complain. And you are in need of more help, regardless of others who need appointments. You need to ask for a) a referral to neurosurgeon by whatever referral process your local PCT use and b) you need these injections sped up. Maybe you can talk to PALS? The pain clinic cannot make a decision about whether surgery is the right course of action.

Also, go look at the website for the hospital you are referred to to find out the normal route for spinal problems, there is like a gold standard referral process (never gets adhered to imo), so it will give you an idea of the processes your own GP/hospital should be following so you can have an idea what to ask for. There is no point having an MRI which shows a prolapse, with nerve pain, and not doing much about it! I am not saying that you need to have surgery, but you need that discussion with the person/people who know if that's an option you should be considering.

spinal pathway this is an example of a spinal pathway route your hospital will have that your GP can feed into. It's a specialist team to decide where you go next. It may be called spinal care/lumbar spine care/back care or something like that. I find this kind of information helpful when trying to know what to ask for.

thanks for the hugs pavlov - yes i'll take them whenever i can, I am quite huggy with friends. And thanks for thinking of me matilda , shame the party was a bit marred but glad you got a bit out of it. The garden stuff sounds lovely! pavlov you really remind me of myself when i used to be a chef i never wanted to call sick ever, noe I regret it- and for what! and my hubby was always trying to get me to see sense. I should have gone on maternity much earlier too but I wanted to soldier on coz of ££ of course and having more mat leave after youve had them- I could only just about put up with getting in and then worked sitting on a stool. but maybe being at home resting would have let my core muscles get even weaker, who knows? my chiro said a desk job would have worsened my hip issues quicker so she thimks being in an active job helped ??
thanks for the reassurance loon, think im decided to eat normally for 6 wks and then go- what do i lose? hate the idea of having a test that is doomed to fail from the outset/ waste of time.
shggg well come and hope you feel better soon
msdj 300x3 is still low- and you get some side effects sometimes as you increase but they can go away quite quick. I am currently on 800 3 x a day and not getting hardly any- just increases slowly, i had to see my doc at the 300 x 3 too, just over the phone, he said keep going, go slow, dont mix up the 300's with the 100's like i did and jump from 300 to 600! the upper limit is about 3500/day. I found they worked then didnt as my body adjusted- still happening , hope at a threshold level they stay effective obvs, let me know how it goes.
have boring old smear with the nurse tomorrow. then taking kids to playground with dh, then work rest of the day to finish the first thing (due on 23rd)- so then itll be 1 down, 2 to go.
SO MUCH STUFF TO SORT OUT - freakin out as it is so overwhelming- student finance, housing benefit, ??leave work by letter? see someome about rights to do with that, list goes on
everyone hv a good night pain free xx

The pain clinic sent me to a hospital to discuss surgery but the hospital I was referred to said surgery wasn't necessary as it wouldn't help me get rid of the pain!

I asked for an appt to see the pain clinic consultant but they wouldn't let me. Saying a nurse would call me in three months to see how I got on with the injections

I was told that my op wouldn't resolve my pain. It did (largely). I can now sleep through the night. Used to wake with the pain. Huge difference.
I have one piece of advice: let your tears out in desperation when meeting people who are making decisions about you. Mine were real. But they sure helped. I'm not suggesting that operating is the answer for you - but I do think that ... they just don't know what will/ won't be resolved by it sometimes.

Thank you for all the really helpful advice

My local hospital I guess is only a small town one. Although big for us. They don't have a lot of things. Such as a spinal section. So I would have to travel for the op. Think the pain clinic mentioned Sheffield which is 2.5 hours away or Nottingham which is 1.5 hours away. I chose a private hospital in Peterborough which I had heard good reports about. But wasn't even seen by a surgeon only a physio. One doctor says one thing and another another. Even one GP keeps telling me now it's muscular pain and to go to Pilates. Even after having an MRI and seeing a disc prolapse.

ms my god you've been given the run around.

If I have this right you've never actually seen a neuro surgeon? Because this is the only person who can decide whether you need surgery or not. Not a physio, pain consultant or GP. They might all have opinions but only the consultant surgeon can decide.

So that's who you need to see. Travelling is inconvenient but forget the distance and research who is best then insist on a referral to that person.

It grinds you down but honestly you've been given some strange advice. The irony is that all your many referrals, drugs and loss of earnings will have cost the country far more than actually sending you to the right person in the first place.

i wish there was a like button on here matilda for that post- it is so true of so many conditions/ illnesses- not just back issues

No I have never seen a neurosurgeon. Not even sure if we have one at our local hospital but I have added it to my list to talk to my gp about. Thank you x

Called the hospital again and have the appointment. It's July so just under 7 weeks to wait on top of the four weeks I've already waited. Gutted. Not sure whether to go private or assume I'm not as bad as they made out at the pain clinic as the surgeon is not worried enough to see me urgently. I also have a bit more power to tell the GPs to take action as I'm not just about to be seen by a surgeon. Am I entitled to another round of physio (4 sessions privately so super quick waiting time) due to the misdiagnosis and refusal to refer for MRI when last referred for physio. The surely owe me something to get me through the wait after begging and pleading in tears for help and being refused and being spoken to like a piece of shit.

Given in and taken the first drugs of the day. I get the impression a lot of us are ruled by managing our pain. I might have another look at the blue badge - any tips or good websites to help this? I'm not fully decided to apply and I'm not sure if I stand a chance.

I neglected to ask which surgeon I would be seeing, it might make a private referral easier if I knew but I know it make actually take a while to get a private referral and won't necessarily save much time - this happened before with the private referral being only a week earlier. I wonder if the GP has the MRI pic and report and whether I could ask to take this to a physio, either through them or privately. What I really want is more confidence in how I am managing with the day to day physical stuff, it unavoidable so I need to do it in the least risky way. Plus massage and the right exercises would be good. Everything I learnt before is for just a muscular condition with a healthy spine. Just feeling even more powerless and in limbo with such a long wait, I want to be able to do something more proactive, even just for my mental health.

Some of you have had such shitty treatment on the NHS. And yes, as matilda says, so ironic that it's not even cost-effective in the long term to deny people the treatment they need.

Msdj - yes, you must INSIST on seeing a back specialist. Not being referred when you've had an MRI & are known to have a disc prolapse is just farcical.

Queen, I fear those waiting times are probably fairly standard - don't think it means things aren't bad. It's crap, though. They should refer you for physio if you want it, but be careful - again, when you already know you have a prolapse there's a big danger of making things worse.

No improvement here, & it's quite clear now that this has spread to my left leg. Pain there isn't as bad as in right leg, but both legs feel heavy & a bit numb - & walking is painful & exhausting, like dragging round blocks of concrete. I don't believe it's a coincidence that I had left leg symptoms for the first time EVER the day after my injection. But struggling to understand how it's happened.

Looked back at MRI report - I have narrowing of lateral recesses at both sides, it says, just more pronounced at right side. Consultant showed me how right nerve root is certainly being impinged upon, but did ask me if I had symptoms in the left leg too. So I suspect there's not much space there where the nerve roots exit. Maybe my nerve root has been bruised / is still irritated from the injection & so it's even more cramped in there?

I'd like another MRI - last one was in October, when it showed all this stuff & the prolapse, & my pain was exclusively in the right leg & rarely went below the knee back then. Started going down to the ankle in about November, & now I have weird burning sensations in both feet.

'Phoned Radiology & left a message but they haven't got back to me. Feeling pretty depressed. It's one thing keeping going when at least one of your legs feels normal & light & works properly, even if the other fucking hurts. But now it's both of them.

Queen, x-posted with your second post. I know what you mean about feeling powerless in all this. Maybe it would be worth you seeing a consultant privately - does your appointment letter not say whose Clinic you're going to be going to?

Don't know when my next appointment will be - consultant said in March he'd see me in about 3 months once I'd had my injection to see how things were & I could decide about surgery then. So it shouldn't be too long really. I'm wondering about having another MRI privately - the chiro. I saw at the start has some arrangement with an MRI research centre connected to York University, & he can fix appointments within days & get the report back in days too. But it's about £700 which is a hell of a lot of money to spend on something that isn't going to make me better. I just know that the situation has changed a lot since the last one.

Loon - Sounds like you should have a Blue Badge if not already too. The Direct Gov form seems ok.

As for the MRI there is a company in London who do it for £250 I think. Just google MRI Waterloo. If you can manage the journey it should be cheaper even if you go by train and stay in a nice hotel! Am I allowed to post a link?

I was hoping to take comfort in the appointment being so far away because I'm not that bad. I do know pain and nothing else is a good sign. Talking to my lawyer friend I did say I'd rather pain than incontinence but she has people who say the opposite. Still waiting on these flipping pain killers kicking in. Clock watching for DH's arrival - he has no idea what a difference it makes to me to be home 15 mins earlier, he never leaves on time.

Found one in York for £199 www.alliancemedical.co.uk so you don't need to come all the way down here! Although I'm not sure of the process with the report and how to link it back into the NHS.

Be a bit careful about cheap MRIs. I had one at Waterloo and whilst it did the basic job the reason they are so cheap seems to be that they are old, low grade machines and a consultant might well want a better one done anyway. They are cheaper the longer ahead you book, too so say in a month it might be £250 but tomorrow £450. Also the consultant might want dye contrast added and repeat. I've had a few private scans but ironically the expensive type were all on the nhs.

queen, I actually would consider seeing your consultant privately. I think you can self refer and you can request a copy of the scan disc from wherever it was done to take with you. Your GP won't have the images just the report. It might speed you up if he agrees to then put you on the nhs waiting list.

I think that in order to get a Blue Badge your condition must be deemed permanent so if awaiting surgery you might not qualify but always worth a punts you apply through your local council. pavlov and myself have become pretty ace form fillers so ask for any advice. The main thing is to highlight all the bad stuff and always describe the worst days you have.

Sorry you are all spinning in circles. I remember it well and was in a way relieved to get off. I was nhs employed for 28 years and still couldn't make the system work so good luck to anyone else. Happy to try to help though.

Queen, I hadn't thought about a blue badge, TBH, because I haven't driven my car since this started! I know I need to get back behind the wheel, but I sometimes get sudden lightning flashes of pain, accompanied by complete weakness, right down the right leg & I worry I wouldn't be safe driving if that happened.

DH keeps taking my car out to keep it ticking over, but will no doubt get more sarcastic comments from the guy who runs the garage next time I take it to be serviced! Last time he just looked at the mileometer & said "It'd be cheaper to get taxis". Which is probably true.

I think for the moment I'll wait & see if I get a letter about the consultant appointment soon. Maybe he'll want to do another MRI if I'm considering surgery? Which I really am now, if this is going to stay in both legs.

loon the blue badge give you entitlement to free buses as well as parking, and also applies to anyone who is driving you, so if you are not doing well with walking, especially with both legs hurting so much and dragging feeling, if you and DH go somewhere with him driving you can still use the badge. it is not for your use, it is for the use of whoever is using the car you are in, so you can transfer it to a friend's car if they are driving you. The rule is that the person driving the car has to either have you in the car, or be waiting to collect you, say for example they are coming to collect you from a hospital appointment but you are not already in the car, they can use it.

I don't necessarily think you have to have permanent disability as in never going to recover, but I think the terminology is it needs to be disabling for 12 months, or likely for 12 months, same as DLA/PIP - you need to have been experiencing the disabling problem for 3 months already with the likelihood of it continuing for 12 months or more. They normally issue 3 years at a time, but they will make an assumption that if you recover before the end of that time, you will send it back.

You apply to your local council, and will probably need to have an assessment - certainly that is how my local council do it. If you apply for PIP and are awarded the higher rate of mobility, your application for a blue badge is automatically awarded.

For those who are in work, or who are considering returning to work at any point - re what is termed a disability, our back conditions ARE protected under the Equality Act 2010, which superseded the Disability Discrimination Act 19somethingorother. Again, you need to have either been experiencing disability for 12 months already, or anticipate that you will be experiencing disability for 12 months or more. I think you need to have been experiencing the disability for 12 weeks already, but not completely sure of that. A disability is (not exact wording) a health condition that affects your day to day activities. It does not have to necessarily stop you or affect your job hugely. It is about how it affects your normal life within, and outside of the workplace, including travel to and from work, breaks at work, etc.

If you recover for the most part from your disability, but take time off on rare occasions, still need some adjustments, you are still protected as it will still be a disability, whatever level it affects you by at that time, as the protection is lifetime. This covers full recovery. So if you make a full recovery from disc prolapse after 12 months, then had a reprolapse 2 years later, you are immediately protected as a disability.

the blue badge also gives you reduced price access to many attractions, helps when visiting places with the children or on your own, as you can park close by. Lots of places use the blue badge as evidence of disability and provide access to concessions. This is hugely beneficial, as I find I go to some attractions with the children, and where I would have once apon a time been right in with them activity wise and now I am on the side lines and it can feel a little annoying to pay full price for something I can't really do and it helps a lot.

Also you can buy a disabled rail card for not much and it gives you 30% off tickets I think.

Lots of info I didn't know thanks. Not sure if buses are free here. I think there are regional differences.

Anyway I love my BB. And have saved a fortune on parking charges as meters and council car parks are free. Did get a ticket in Central London though as parked in a residents bay. You are allowed to do that locally but not, it seems up there.

That is useful, thanks, pavlov. Presumably you weren't able to apply for yours before you had the surgery, were you? I'm still hoping this won't carry on for another 12 months, but am very, very anxious about the future right now.

matilda I think it even varies from borough to borough in london ! when we stayed in london, we parked in a residents parking space, DH got worried and went out to see the traffic warden before he got to our car and was told it was fine to park there with a blue badge. But I know that some places you can't do that, so I would say check your local council rules. I do know some parts of London are free for disabled travellers as the person who we rented from has a disability and he took advantage of his ability to travel for free to come from his home to ours. It's a minefield!

I know that in our area not all council carparks are all day free. I found that out by getting a £35 ticket as I didn't display the clock, had not had it long. The council carpark I normally used was all day free, this one was 3 hours limit. Now I always display the clock just in case! Although I asked a warden and was told that council carparks vary so check, but street parking is unlimited. And double yellow lines that are not loading bays are 3 hours, as long as you are not a causing a hazard and there is no free parking space right by you that can be used.

loon yes I was awarded mine before surgery, although, to be honest only a few weeks due to the delay in getting it sorted.

I would say loon that you should apply. I delayed applying for 18 months as I felt I was going to get better. If you get it, you use it as long as you need to. When you improve you can return it. I would say there is a good chance that you will have some mobility issues for a year, I am not saying that to be doom and gloom but realistically, even if you start to make a steady recovery from right this second, it can take 18 months for nerve pain/damage to resolve. So, I would, in your head, plan for this to be a problem for 12 months or more, with the anticipation and working towards the notion that it won't be. Whatever measures you put in place to help you now don't have to stay in place forever. You have to base your plans on how you have been for x number of months and work on that.

I think applying for a Blue Badge is a good idea. I didn't expect to get one but was scared about how much pain I'd be in post op (was already almost crying when had to face walking to a parking metre 200 yards away). Was easy (and I'm super-crab with form-filling). Gave to GP who filled out the rest. Got it without problem. 8/10 I font use it. But boy is it helpful on those days and at those times I'm in need. Go for it.