To not understand why back pain is so dismissed?

[Saz432]

I posted a few days ago about a recurring issue with my back and worries about being fobbed off by a doctor - my fears were of course completely right. I had a strong suspicion it was going to happen so put it off until this morning hoping it would improve.

I damaged my back a few years ago when I was exclusively pumping. I have had constant upper back pain ever since. I also have a large patch on my back that has altered sensation. This is all in my notes. I’ve had two courses of physio. I’m now just accepting it’s always going to hurt because nothing makes much difference.

In December I seriously messed up my back lifting my son out of his cot. I spent five days in awful pain and barely able to move before seeing a doctor - they gave me a very low dose of diazepam for a few days. They said I could take up to four at a time - I built up to that I was worried about being drowsy but I wasn’t even slightly drowsy even on the maximum dose. It did help me get mobile again so I was very pleased. Haven’t seen a doctor about my back since as I was back to having just the normal level of daily pain.

On Sunday I did it again, putting my son in his cot. I’ve been in so much pain ever since and I am seized up. I can barely lift my children. I can’t sleep because of the pain.

I managed to get a phone consultation with a GP and explained what had happened and that what I was given last year really helped. She said she would prescribe me some naproxen - I didn’t realise until after I got off the phone that this is another anti-inflammatory. I’ve been using diclofenac suppositories that I have left over from a surgery I had and they’ve helped the pain a little but made no difference to my mobility so I know this isn’t going to help much, if at all. Is a few days worth of very low dose muscle relaxants really so bad that they won’t prescribe it 8 months after they were last needed? I’d understand if I were asking every month.

I’ve been a patient at this practice for over 3 years (and actually this doctor I spoke to was my GP throughout my childhood until I went to university) so they know I’m not some random drug seeker.

I am reasonably certain that if the doctor themselves were in this much pain, unable to sleep or work / look after their children, they’d take whatever worked.

It seems like back pain really isn’t taken seriously at all. I don’t bother seeing the doctor when it’s worse than normal because what’s the point? This is different though, I can’t bloody move!

What do I do now? Assuming the medication makes little difference (I’ll be delighted if it does), do I just have to tough it out and hope it improves on its own? I don’t want to be taking strong medications but I need to be able to lift my children and sleep!

When there’s something available that will actually work and they only need to give a few days worth, why won’t they do it?

I’m so sorry Steel - this makes me so angry!

I will find a way to get an MRI done. Part of me thinks it’s just a postural issue because of how it started but I’m not sure that would explain the constant altered sensation across my back, which is spreading. But maybe it could. It’s ridiculous that people have to put up with shit like this unless they can afford to pay for private treatment.

And I’m pretty sure that my hulking weight of just under 10st isn’t causing me debilitating pain, but thanks.

After you get over this bout of increased pain, please go back again and again to get this reviewed.

GPs are not in my experience skilled in this area and tend to dismiss the issue. I have literally suffered for 4 years with back pain, crying my eyes out in agony and in the end I was told I was just anxious and that was causing my muscles to tighten and become sore. In the end I too stopped going to the GP as there didn't seem much point. This was now my life.

I was persuaded to go back at the end of last year and the locum agreed I'd suffered long enough so referred me to the muscular-skeletal clinic. I was from there sent for an MRI (I used to ask at every GP appointment for one but they refused) which found I had a massive tumor in my cord.

My life would be very different if it had been spotted sooner and I would have been able to look after my son properly. As it is, the increased time for diagnoses meant I had damage to the cord itself and a hole developed. I'm grateful now I've had the operation but imagine if I'd listened to that last GP who told me I was just anxious?!

There are people better qualified to look at this for you. It might be that nothing can be done, but being where I am now, I know that it needs investigating properly.

The thing is, I really don't think a GP will hand out any type of benzodiazepine during a telephone consultation. Really, you need to go face to face, let them see just how much discomfort you are in.

Aren't pins and needles indicative of nerve pain rather than muscular though? It may well be the case that you need something like pregabalin or amitryptiline (sp).

It may be helpful to try and quell this determination you have for diazepam as a HCP could easily interpret it as 'drug seeking behaviour'. Do be open to self-help and ask for an MRI, physio, even orthotics could be helpful. It might be that you need a combination of things to improve your pain long term.

Life that’s absolutely horrifying. I am so sorry. I’ve become disillusioned completely with doctors and never go now unless I have something really acute (eg thought I had pancreatitis after having had it before, but fortunately it wasn’t - but once the blood test ruled it out, that was it, and that’s the way things go generally IME). I’ve spent so many years being fobbed off about gynae stuff and other stuff that I’ve just given up trying.

I will definitely keep going back about this and pay for my own MRI if they’re not willing to help.

Had a quick look online and it seems upper back pain is unlikely to be anything like a slipped disc. Maybe it is just posture. I’ve tried to correct it as best I can. I don’t know really.

And there it is. You can’t even say “I took this for me for two days nearly a year ago and it worked really well for exactly this problem - can I take it again?” without someone saying you have a “determination” for it. I wanted that because it worked. I don’t care that it’s valium, I got no high from it, it just stopped me from being in terrible pain and enabled me to move. And if they needed to see me to give it, they should have said that.

I’ve experienced neuropathic pelvic pain for years - this is not the same thing. This is more like having a dead arm because you’ve been lying on it, and it’s because I’m not properly mobile.

And with respect, I’ve been open to (and doing) self help measures, physio, exercises etc for three sodding years and just get on with the daily pain I experience. This is a different situation.

If you are in any way the kind of personality who tends towards perfectionism, anxiety, people-pleasing and putting massive internal pressure on yourself, I would give Dr John Sarno’s book Healing Back Pain a go. Or at least have a look at the reviews on Amazon to see what others think.

His work totally cured me of horrendous back pain, numbness and tingling. Life-changing, really.

There is no logical physical reason why a healthy young woman would sustain long-term damage to her back from pumping and lifting her child. It seems to me that you will have to look in a different direction for an answer. What have you got to lose?

There is no logical physical reason why a healthy young woman would sustain long-term damage to her back from pumping

Have you done much pumping? Due to low supply I was pumping for 20-30 minutes every 2 hours for months on end. The posture required is very very bad for your back. I’ve spoken to quite a lot of women who’ve had similar issues, but whether they usually last longterm I don’t know. There aren’t exactly researchers falling over themselves to study it, can’t imagine why! I will certainly have a look at the book and see if it might help.

Were you referred to NHS physio in the past? IMO physios should shout out and say when they feel there is something worse going on.

Can you ask for a referral that way? I don't think a physio would ignore an area of your back with odd sensation. Where I live you can self refer for 'normal' physio, and there's also a sort of triage service with more skilled physios which looks after more complex cases. This has long waiting times, but has s good reputation. Do you know what the set up locally is?

You sound like you are having a really rough time.

Can you afford a private physio? I did this after injuring my back in a serious car accident and it really helped. It took quite a long time for me but as I said, it was a serious injury with the added complication of scoliosis. I did try an NHS physio but to be honest, they were useless - saw me once, barely touched it, have some simple stretches and declared 'it will probably never be right'!! I was 25 years old and they were basically saying I was stuck with it!

The private physio was amazing and did so much intensive work on it.

I had a slight, unrelated issue following my pregnancy and went straight back to the private physio who fixed it in one session.

Doctors tend not to be able to do much except prescribe pain killers and refer to either physio/scan. Pretty sure physios can refer for scans though if needed

If you aren't looking for a permanent "fix" have you considered just buying the drugs online OP? Diazepam is very easy to come by although there has been reports this year of fake pills doing the rounds but overall if you are careful the risk is very low and tbh that risk also exists getting the drugs through the NHS, albeit at a lower level.

FWIW my DP swears by Naproxen for a bad back but the acute pain that you're talking of is perhaps a bit different. Good luck.

Yes, having a baby / breastfeeding / pumping / lifting etc was how my own back pain started. Later thanks to the Sarno books i started to understand all that as contributing to the pain but from a very different perspective.

I don’t deny that pumping is not a comfortable position to be in and that it can create pain and discomfort. But it shouldn’t last for years. I mean if you break your arm if heals in 6 weeks! Our bodies are strong and designed to recover. Your back is strong and designed to recover.

I don’t for one minute mean to discount or downplay the pain that you are in. It is absolutely horrendous and I lost count of the number of times I broke down because I couldn’t believe how bad I felt. You have my absolute sympathy, believe me. But I think the reason doctors can’t help you is that there really is (usually) no answers they can give.

Incidentally, MRIs have shown “slipped discs” in people who are walking around completely pain-free! There (bizarrely) is little correlation between the slipper disc and the experience of pain. Weird, huh.

I’m glad you are going to try the book and I wish you much luck in your journey to recovery.

It's odd how different GPs are from area to area.

My back 'went' a few weeks ago, I called the surgery in screaming agony and a GP called me back within the hour (prescribing codeine and diazepam.)
This is despite the fact I take oxycodone and Amitriptyline on a daily basis for chronic pain.

Since then, the resident pharmacist at my surgery has been calling me to arrange new meds that may work, adjusting dosages and he also made a referral to a pain clinic.
My GP referred me to the MSK clinic and for an urgent MRI.

My last surgery chucked tablets at me once a month and that was that.

I know it's tough OP, but you need to be your own advocate. Push, push and keep pushing.
Kick up a bit of a fuss. I kept reiterating that it wasn't normal for a young woman to be suffering this level of pain for no apparent reason and, finally, I've found a GP who listens.

I had a course of nhs physio early on into the problem - they thought the altered sensation was directly related to the pumping and related posture issue. Which is why I haven’t been overly concerned about it. It was just a band across my back at that point, about where my bra strap goes. The area is larger now and sometimes reaches up to my shoulders. It’s not numb but feels strange, a bit like if your arm goes to sleep and then you touch the skin, and sometimes a sort of crawling feeling on my skin. It’s really noticeable in the shower, as it feels very different when water hits that part of my back.

I will ask about another course of physio, the surgery has sessions there and last time it was only about a month wait. Will see if I can afford to see someone privately in the mean time.

It really annoys me that the one thing that helped in this situation before is a controlled drug they don’t want to prescribe - I wish it was something else!

@Jillyhilly that book sounds really interesting. I have chronic pain in two parts of my body but not in my back (apart from when it seizes up in sympathy!). And by now there's clearly a lot of psychological interaction. Does this book have a wide impact than backs?

Sorry if someone's already suggested this, I haven't read the entire thread... but would it be worth/more cost effective for you, getting a private GP appointment/private prescription for the medication you know has been effective for you in the past, to tide you over through this acute patch... and then continually pestering until you get a referral for an mri on the NHS so you don't have to pay out for that?

Also, I know someone's suggested above l buying Valium off the internet, I'd be really, really careful and cautious about this (speaking as someone who regularly bought 10mg diazepam off the internet over a 3-4 year period), as even if you purchase consistently from the same store/company, the brand of medications you get sent vary massively from order to order and are often a mix of diazepam & other substances when you research the specific brand/manufacturer... you may get lucky with a supplier, but from my experience it's pretty hit & miss and can be risky.

Really hope you get some relief soon though, back pain really is horrendous :(

@Jillyhilly it depends what's actually wrong I guess. My back was never going to heal itself, and I had 5 months of pain before surgery

@PassMeAnotherCoffee

There are indeed huge implications beyond backs. Dr Sarno was a NY based back doctor of many years standing who became more and more frustrated with the lack of consistent help he was able to give his clients despite his best efforts. It’s quite interesting to read about his experience from the doctor’s perspective. Over time, based on his observations of his thousands of patients, he built up an understanding of a certain personality type who tends to suffer from various pain syndromes. And yes, it extends way beyond backs.

Obviously it’s important to have tests to rule out anything serious or systemic first but part of the struggle is believing that you are strong and that your body can heal. For me, I spotted myself immediately in the stressy people-pleasing perfectionist personality type and very quickly grasped what he was talking about and how it worked.

I know it all sounds ridiculously woo but it really isn’t. I think you actually have to have exhausted all other possibilities and be fairly desperate before you can give this a try . To be honest I try not to talk about it at all these days because most people roll their eyes but sometimes I can’t help myself especially when i see people really suffering!

@YesQueen

Yes totally, and I’m certainly not saying “it’s all in the mind”... not at all!

I’ve just had a look online and there is a private GP practice I could go to for a consultation - you can get a 20 minute or a 40 minute consultation. I think I might do it. I have a lot of complex stuff going on with no real answers and it would be really useful to sit down with someone and actually go through it all rather than rushing through and feeling completely dismissed.

I could talk to them about the back issue (not specifically for medication, I’m not sure I could reasonably expect a doctor who’s met me once to write me a prescription for a controlled drug, but just to discuss my best options) and to discuss some wider health issues that have been kicking my arse for years but I still don’t have any answers (totally unrelated to the back issue as far as I can tell).

I live with chronic pain - the issue is often not that it isnt taken seriously but that theres not a huge amount they can do about it.

Back pain is the most debilitating thing, you have my sympathies.

Try the naproxen for a day or two. If it doesn't help, or help enough, go back to your GP and go onto the next option. I don't think they will just prescribe something like diazepam before you at least give naproxen a try. I know it is frustrating, even more so when you feel fobbed off.

If it helps my timeline was sciatica for years on and off
Jan 2017 had pain but felt different, saw physio via work

Feb 2017 MRI via physio, physio refused treatment as something was in her words "very wrong"

March 2017 back to the GP in extreme pain, put on naproxen, paracetamol, dihydrocodiene and diazepam. Stopped work at end of March as unable to function or move or sit. Told a&e to cut my leg off

April 2017 another MRI, seen by neuro and waiting for surgery. Back to a&e and put on morphine. Scan showed a 15mm herniated disc at L5/S1. Lost feeling in leg, foot dropped and unable to walk without dragging it

May 2017, less than 1 day before planned op, MRI number 4 and diagnosed with cauda equina. Operated on immediately by neuro, had a discectomy, laminectomy and nerve decompression as my spinal cord was being crushed

Discharged 21hrs later on no pain relief and back on my horse 8 weeks post op. I have some nerve damage but very mild

In general I agree with you. I’ve been through over 20 years of chronic pelvic pain due to endometriosis and nerve damage resulting from that and the multiple surgeries I’ve needed. I’ve tried every medication, seen specialists, been on pain management courses, you name it. I fully accept there’s bugger all chance of that pain ever being gone, I’m just trying to handle the endometriosis part as best I can.

But this is totally different - it’s a recurring injury, and there definitely is something they could do to provide a significant shirt twrm improvement in just a couple of days based on when I took it previously. But they wouldn’t. The more I think about it, the more annoyed I am.

When all this back stuff first kicked off, one of the GPs in the practice decided I must have fibromyalgia despite the fact it really doesn’t fit my symptoms - I had already been diagnosed with ME years before and as far as they were concerned they’re the same illness

I asked if I could be referred to a rheumatologist if he thought that was the case, since they’re supposed to rule out others things first. That referral was rejected because I’d “already been diagnosed with fibromyalgia” by the GP.

No matter what happens since, any problem is attributed to the fact I “have fibromyalgia” when I don’t believe that’s true, and if there was time to actually thoroughly discuss things they’d see that it doesn’t fit. But now it says fibro on my notes, that’s as far as I get.

In fact, I walked around for 18 months with fractures in my foot that healed badly because they kept insisting it was “just fibromyalgia”. I kept telling them my bones felt broken! They didn’t listen.

Rather than sitting here unable to move my head or pick up my children right now, I could be feeling much better. That is really pissing me off the more I think about it.

I have no idea whether paying to see a private GP will mean better quality treatment, but it would at least give me time to explain everything in one session.

At least the annoyance is distracting me from the bloody pain I suppose!

Thanks @Jillyhilly (and sorry to derail your thread Saz). I do agree with you that it's not 'all in the mind' and that any sufferer needs to rule out serious injury and get that treated properly first. It's clear our minds have a big role to play though.