Too many specialists- vet pry little help for lower back pain

Hi, I have acute chronic back pain. I've seen an orthopedic surgeon, specialist anaesthetists, physio, pain clinics, osteopath, chiropractor, do daily Pilates, adjusted to what I can manage, and have tried all the meds the doctors have suggested.

I still have acute daily pain, haven't been able to work since June and feel quite desperate.

I have 2 tears in one disc, front and back, and one doctor thought that was the reason, so I had a steroid injection- no improvement. Another thought that nerve block injections would help, so I had 4, they were such agony and made no improvement.

I wondered if anyone else has experience of apparently very little evidence of why they are in such pain, but it is very real and my life seems to have been put on hold because I can't sit on a chair, and can't stand still. I can walk for about 10-15 minutes.

I try everything suggested- tens, accupuncture, mindfulness.....

Anyone got any ideas? Thanks

20 Replies

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  • Rheumatologist? Inflammatory back pain is actually not that uncommon and not particularly well picked up by a lot of doctors. Its worth ruling out if your back pain has become chronic. Check out the signs of Inflammatory back pain on the National Ankylosing Spondylitis website ("Have you got the S-factor" campaign) and if you tick most of the boxes for that, then definitely ask for a rheumatology assessment.

  • Thanks for the reply. I have been referred to a rheumatologist but looking at the AS website my pain seems different, especially as I tend to have about 30 minutes after I get up before the pain gets really bad and it gets worse as the day goes on. I'm seeing a man in London today who specialises in Gun Intramuscular stimulation accupuncture so I'm hoping that might help.

    Don't know if you know that one?

  • That's like reading my own problems,but a lot longer years I am sorry to say years!. I know that's not what you want to hear you are looking for someone to give you some sort of life you don't say if you can't even sleep.I also feel that Nobody realises how bad I am it's just a sore back no its sole destroying,it has affected every part of my life,so don't think you have just got a sore back its more.sorry for being so gloomy I am just trying to say it's a hard thing to go through don't give up keep trying everything and hope you get some life back and you aren't the only one like this as you will see reading the articles on this.I hope someone gives you the answer I have been looking for a while good luck keep fighting it.

  • Dont you think that SORE BACK should be a banned phrase? Its agony, not sore! Have you managed to keep up any sort of work? My work have been so amazing and when I have a good day, they come and have a short meeting, but I find the knock on of this is that the pain gets so much worse again, just seemingly form the effort of concentrating, even when they don't mind me lying down through the meeting!

  • Hey ropes1967tanzania,

    Sorry to hear about how terrible your back pain is. I have worked with many people who have been in a similar situation, having seen many specialists and still being in excruciating, frustrating, life-altering pain.

    I would really recommend reading "chronic pain: your key to recovery" by Georgie Oldfield. It explains how pain works and how it can become chronic. It gives self empowering techniques that resolve what's causing the pain and ultimately how to recover. I know many people who have recovered by using the approach in this book. Unfortunately so many health professionals don't understand all the aspects of pain and focus on "management" rather than "recovery" purely because they don't understand the cause of pain properly. The central nervous system becomes overly sensitised and you can desensitise it yourself with the methods explained in the book, or in books by Dr Sarno or Howard Schubiner, all chronic pain specialists who get people to recover from chronic pain like yours and other pain disorders. Good luck!

  • You do not want to de-sensitise. You want to increase sensitivity so as to pick up the muscular activity that does damage.

    Inflamed tissue caused by muscular activity can cause a lot of pain.

  • For some the reality is gruelling unremitting pain. With the added insult as no real diagnosis or at best one the doesn't warrant the volume of pain shouted day and night. having said that. I found that reading everything I could lay my hands on about crhonic pain helpful. I wouldn't say I have moved into that state of acceptance that is my consultants goal! But for me it's about trying to rise from the Phoenix ashes as it were to redefine a different life. I definitely have learnt that some things turn up the volume. One tip be creative with that tens machine I stick here there and everywhere and give it a good month before giving up. It doesn't take the pain away but changes the focus. Cat on a hot tin roof is my state of being and its knackering. Here's hoping that you find a solution.

    Throwing you a pinch of star dust to light a dark corner.

  • Stop the Pilates. Your way of doing Pilates may be doing you mischief. See an Alexander Teacher and see what they can do to improve your posture and your muscle usage.

    At a later date when you are satisfied that you are using your muscles the way your muscle are designed to be used then do the Pilates again.

    Mindfulness requires a person to teach you. It is not something you can learn from a book. There are lots of subtle skills that require learning in order to do mindfulness well.

    Hope this helps.

  • I agree! I can only do lots of stretching exercises and very gentle yoga.

    Nothing strenuous and absolutely no aerobics or pilates. I also take a daily walk.

  • I am so sorry to read about your pain. It was just like reading my story. Its sooo painful. I have a very understanding pain specialist who said that the wall of my disc are so thin the contents which are caustic finely spray out and irritate the nerve roots. I have seen a neurosurgeon who was not at all understanding and wont be offering me a surgical solution. For 3 months I have been bed bound and cared for by my husband. I do hope you get better soon. Please let me know if you come across anything that helps.

  • Hi everyone, I just wanted to thank you all for your responses. Its amazing how this site helps to reduce my sense of isolation! I went to london yesterday for Gun Intramuscular stimulation- a bit like accupuncture but felt quite different to accupuncture I've had before, so I'll let you know whether it is effective- main problem is that I have to go to London for it which is so painful.

    I've bought the chronic pain book so will read that and I'm so interested that there are so many different suggestions coming form everyone- seems different things work for each of us- I take hope from that as perhaps something I haven't tried yet might help down the line?

    Thanks again, Ro

  • Sorry to hear about your experience. Unfortunately all too common. Best advice: avoid snake oil at all costs! They abound in many forms in the back pain sphere.

    Find a really good, hands on physio to mobilise the stiff links in your back to give you some relief and to keep other spinal segments mobile while the dodgy one has a chance to become less inflamed. Take anti-inflammatories if they help. Treat this as an acute back episode and as earthwitch said check out whether you are predisposed to inflammatory type back pain. Sounds to me like you've got an acutely inflamed disc. Avoid any physios who want to talk you out of pain or suggest stupid exercises. Avoid chiropractors and osteopaths. If your acupuncture thing doesn't give you relief In a few sessions don't go back.

    Seriously consider steroid injection with a good consultant for relief and diagnostic purposes. Keep in touch with this site. Best wishes 👍🏼

  • Thanks for the advice. 4 years ago I had a steroid injection and it was amazing. Helped me get back to work and get strong again. This time it made no difference and nor has anything else?! Really helps to chat with people on this site though as I'm getting so fed up with people texting and asking if I'm better or if it's still SORE! I wish it was sore but it's not, it's agony! So sad how many of us there are in pain- need to stick together! :)

  • Hi Ropes, sorry to hear you've already been around and around the garden without good result... people are really bad at saying the right thing. I can't bear to see the face drop, the embarrassment and all the other things people do when you tell it like it really is! how quickly they move on... gah! anyway, you are still here. still acute disc problem and that's the focus. Tears in discs are painful! The outer fibres of discs are the only bit that carry pain signals and the crap that seeps out is noxious to nerves so that's why you are in such pain. this type of pain completely screws up the muscles so there's no way anything is going to get you running a marathon in that kind of micro climate. it s a shame the steroid injections didn't work. are they sure they got the right level? it should have afforded some relief? I've come to the conclusion some consultants just aren't very good and some are sadists when it comes to injections. I'm seeing someone at the moment with good technique and they don't hurt at all. there is huge variation. don't give up. try to focus on the problem and not the cascade of misery that is chronic pain. can you get another opinion? what drugs are you taking? definitely anti-inflammatories? What level is the disc tear? please don't feel you have to talk about all this if you can't face it... just wishing you the best... I know it's really hard. ;)

  • Thanks for all your ideas. It's just a help to hear you say that its hard. I sometimes think people think I'm sitting at home all day having a lovely relaxing time!!

    Yes I'm going to ask for another injection but I gather a rheumatologist is different to the pain clinic so I've asked to be referred to that too. People on this site have driven me to keep looking for more solutions or asking for more support or referrals!

    Take care!

  • HI I USE ACTI PATCH ITS AN ELECTROMAGNETIC PATCH IT HELPS ME A GREAT DEAL TRY IT.XX

  • I've been looking into the electromagnetic patch- do you know what the difference is between this and a tens machine? I use a tens sometimes but can't tolerate it sometimes when the pain gets too strong. I'd be interested in your experience. Thanks, Ro

  • Hi

    I had a very simular experience, in the past, At the time I knew nothing about backs, even though I had a history of back problem, I was probably in worse state you as I could not stand up only crawl along the floor on all fours, I just had to lay on the floor 24/7 for weeks, I kept trying to stand up which was agony, eventual I managed to stay upright for a few seconds, forced my self to keep

    Doing it, then a few steps, and so on, eventually when I was able to walk a few yards, The NHS had me measured up for corset,

    I was under the supervision of back specialist at the time, who to be honest did no seem to have a clue, but The chap who measured me up notice My spine had a lateral curve in it, ie, bent side ways, also I noticed my right leg had wasted away, the specialist didn't even notice ether of these, Sorry to be long winded

    About this, but am comming to a very important, my wife happen to pick up a book called The Back and Beyond, that told me a lot about backs and the hidden

    Effects they can have on your health,

    It also mentions muscle spasms, when back muscles go into spasm, they tend

    Lock up in an attempt to hold your spine in a fixed possition, to protect it from

    Further damage, if you happen to have a weak spot in a disc like a tyre with a

    Bulge in it or worse a blow out, eqivilent to a herniated disk, you are in trouble

    As your back muscles are applying a high degree of pressure sqeezing your

    Discs together making things worse, they were bending my spine side ways,

    That takes a lot of force to do that, sorry to take so long to get the point,

    But With back problems it is most important that you try your best to keep

    Your back muscles from going into spasm, once they lock up its very difficult

    To free them off, until these are freed of you will not be free of pain,

    I did not know this until I had recovered from my bad back, massage is good to release it, a charopractor is propably the person to do this,

    A few tips, I have found to be good.

    If you have Pain at waist level, always keep this warm, wear a back warming

    Pad or belt, when heavy lifting wear a weight lifters belt,

    Nerver wear hipster trousers

    Sit in upright chairs, avoid modern low slung seating, a firm but comfortable

    Bed, if you have a under sprung bed, put board under top mattress,

    Avoid cars with low slung seats, firm high seating is best,

    A lot of people swear by hot bathes for they backs, but I have found although

    They may feel good at the time, you may pay for it the next day,

    Regards Bryan

  • I'm so sorry to hear you have had such a long journey in such pain but many thanks for all the advice- and I will try reading that book! Take care.

  • Hi if you want the book, you can get used copy from Amazon, or his later book

    Your back your health, cheaper than the original one,

    Regards Bryan

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