Hi, I injured my back nearly 3yrs ago, I thought it was a simple strain which I have had before which resolved itself in a few days.This however hasn't,it aches all the time and feels as though it will go at anytime.If I move wrong, can just be a minior movement I get a terrible accute pain which knocks me back for days or weeks.Cannot get a diagnosis, had X-ray and MRI and was told, nothing sinister, small herniated disc and bulging disc.Told various opinions ,seen physios ,one said won't get any better, one said will get better, another said once you have been in pain more than 3months it becomes phantom pain.Feel very frustrated my GP practice doesn't seem to be interested.Waiting for pain clinic.Was wondering if anyone has this experience as nobody seems to know.thanks.
Back pain: Hi, I injured my back nearly 3yrs... - Pain Concern
Back pain
I feel for you. Sounds very similar to my experience - my back finally decided to not get any better nearly 10 years ago. Had all the same tests as you. When you were told that any pain that goes on for more than 3 months is 'phantom pain', that isnt them telling you that it doesnt exist, or its all in your head. Phantom pain is old terminology for what is now called Chronic Pain - the definition of which is pain that lasts longer than 3 months or long after the initial 'injury' (use that term loosely) has healed. Basically, when we get injured, pain signals are sent through nerves from the injury to the brain to stop us doing what hurts - if they didnt exist we wouldnt know that the hand we had resting on the cooker was burning lol. With Chronic Pain, those same nerves 'short circuit', telling the body that the pain is still there even though its not. When people have amputations, the term 'phantom pain' was used because even though the damaged limb had been removed, the pain still existed. They now know that there is nothing 'phantom' about it whatsoever. If you have Chronic Pain, then unfortunately there isnt an awful lot that can be done - and thats the hardest thing to get your head around. I'm not saying that you have it, just sort of giving you a heads-up. There seem to be 2 types of Pain clinic, one where they help sort out any pain relief etc, and the other is about pain management - not sure which type you have been referred to. I was very sceptical about the pain management clinic, but it was the best thing that ever happened for me. The first thing they told me was to stop looking for a cure (harsh, but fair), and then they explained everything about chronic pain, and then teach people to learn to live with it. I hope some of that helps you x
Hi jaffa7 thanks for your reply. I have been referred to a pain management clinic.Good to hear you had a good experience with it.The coming to terms with it must be very hard? I have had other injuries, one lasted for 9months and one lasted for 2years and both have resolved that is why I still have hope.My pain becomes much worse by being on my feet (is that what happens to you?) and doesn't really bother me at rest.If it is chronic pain I would have thought it would be constant but I don't know.You will know better having been through it.Thanks for your time and keep well.😁
The pain management clinic should work well for you. Like you I had had previous injuries that sometimes resolved in days, sometimes months. Coming to terms was very hard - I was a very active zookeeper at the time. The pain started when I was stood up for too long, but now its if i am in any position for too long, including when sleeping (sleep ??!! Whats that ??!! lol ). Also things like sitting in a different chair at a friends house can make it even worse, and when I changed my car the different sitting position put me in a flare-up for months. The pain is like a deep ache around my lower back that goes down to my hips, and sometimes higher up my back. Regarding physio, it needs to be given by someone who knows about chronic pain. With a standard muscle pain/strengthening exercise, the best thing to do is push yourself and keep things moving until they have healed. With Chronic pain, physio is starting to change to very very little, often. For example, if I was doing a leg lifting exercise while laying down, then the chronic pain physio would only allow me to lift UNTIL it started to hurt, even if that was only half an inch, and to continue doing that, increasing a tiny bit each time. Whereas a standard physio would encourage me to try to lift further etc. Not sure I am explaining it well lol. The thinking is that you are never going to beat chronic pain, so the second something starts to hurt, stop. Otherwise it just gets worse. Thats also the theory behind 'pacing'. If you look up 'chronic pain and pacing', you should find some info. Also, although every person has a different story, think twice if you are ever offered any surgery . There is now something called ''failed back surgery'' that is actually a thing in its own right, because sometimes it not only doesnt work, but can make things worse. Anyway, yes you still have hope, and fingers crossed that you dont have to wait for too long for the Pain Management Clinic - I only hope its as good as the one I attended x
Hi jaffa7, I have contacted the Pain Management service and they said it is a very long waiting list.So it looks like chronic pain is a big problem. I was also very active, walking, cycling, motorcycles. I am thinking of selling my motorcycle as it is stuck in the shed but finding it hard to part with.Zookeeping sounds a very interesting job,you must miss it, you can get very attached to animals and them to you.Yes I get a deep ache in my lower back which spreads to make my whole pelvis ache.Im not going to physios anymore just doing my own exercises.The thought of surgery scares me unless it is absolutely necessary ,even a doctor once said avoid going under the knife as there are incompetent surgeons! take care 😁
Hi Jaffa,
Do you mind if I ask which Pain Management Program you attended?
Hi Rob. Yes I am in Somerset and it was at a small hospital in somewhere called Sherborne. I dont think the course itself had a specific name, just Pain Management course. It was twice a week for about 12-14 weeks if I remember rightly - so pretty intense, but I learnt so much from the physical side of things to the emotional side, and had specific physio from someone who knew their stuff when it comes to physio and chronic pain - which is pretty much the opposite of physio and acute/muscle/post-surgery exercises.
Hi,
I just finished a Pain Management Program myself. Instead of the twice a week one, I was on a all day every day one for 3 weeks. it did make a huge difference. Pacing, CBT and just understanding that this is it, and any further changes will come from us. From the stuff you wrote I was just curious if it was the same one I was on as it sounded familiar. I was on the one at Salford Royal, and I can't say enough good stuff about it.
I've been struggling with back/leg pain for years, and it was starting to get the better of me. This is the first time in a as long as I can remember where i have actually felt positive about life.
I'm glad it helped you as well
Hi Chriskros, Like you I suffered a accident and was told I had strained my back and it should be back to normal after a couple of weeks rest and then slowly build up my exercise and I should be back to normal after 4 to 6 weeks now after 40 years I can hardly stand for more than a few minutes without support, every case seems to be different as to whether they get over it or not I have had just about every test that the army and the NHS can do for several years I was told that they can not find any reason for the pain I asked if my problem was all in my head so my doctor did a thing called MUA manipulation under anesthetic where they give you a general anesthetic and then move you about to see if you react or not as that way if it is all in your head you would not react the day after the procedure my doctor came round and i noticed he had a very bad black eye i asked about it and he told me that as soon as he started to move me around I reacted and kicked him in the eye and knocked him out for 5 minutes he said whilst they still could not find a reason for my problem that it was not all in my head and that there must be something they can not detect, it was several years later that I was sent for a new full body scan where I was told that my back was broken in three places and had not fused back together they then offered to fuse the breaks but at the time for every bone they fused there was a 10% chance of being paralyzed and as they had to do the bone above and the one below that there was a 50/50 chance of being paralyzed I said as I can still move most of the time that I would leave it until I could not manage any more as even though the numbers were the same it seemed to have a 50/50 chance of fixing the problem than a 50/50 chance of being paralyzed.
I know I paint a bad picture of the future but as I first said every case is different
good luck in finding something that works for you,
Regards Poppy Ann.
Hi - sorry to hear you're in so much pain. I too had a similar thing resulting in severe spinal stenosis (where the spinal column narrows and starts to crush the spinal cord. I've had 5 spinal surgeries including the insertion of a spinal neuromodulator. Before the first decompression surgery I was told there was a60% chance of making my unmanageable pain, manageable. Those odds were good enough for me. I later needed a fusion which was also helpful but did not get rid of the pain. The neuromodulator which I had done at at Thomas hospital in London is what I now currently rely on, although it hasn't taken all the pain away
Hi morphalot I am a light weight towards you, my scans showed not too much damage and was advised to do more, so they don't seem to believe my level of pain unfortunately scans don't show pain. I would be scared to death of going under the knife but if it helps it's probably worth it.Hope your procedures fix you.take care.
Chriskos - my scans showed little damage too. But nerve damage cant be seen, and any initial damage that triggered the chronic pain could have long ago healed up by the time you got round to finally having scans done etc. And if its chronic pain then doing more will make it worse. Getting medics to believe in your level of pain can sometimes be difficult, but there is much more awareness around chronic pain now, and if it means you have to change doctors or ask for second opinions then do so. Dont let anyone dismiss your pain. Its a shame its such a long wait for the pain clinic, but I truly hope that when you do get there, that its as good as mine was. Yes it was intense, but not only did we learn lots, we also had a laugh believe it or not. We had a small group of 6 of us and some of us are still friends now x
Hi jaffa7 the pain management course I am waiting for is called breathing space. The course is for 2 hrs per week for 6 weeks. I have a telephone appointment next week with GP had to wait 2 weeks for that,if I wanted a face to face app it is 4weeks minimum.Did your injury improve at all after you first had it?or has it gradually got worse.My injury improved very slowly over about 6 months and seems to have plateaued.The scariest thing with me is the feeling my back can go at any time.take care X😁
Yes initially it started to improve, but then levelled off when it was still incredibly painful. I was sent for 'standard' physio and it just went downhill from there. After all the scans and tests were done with 'nothing substantial' found as a cause, thats when I saw a different consultant who recommended the pain Management course, and also gave me the first inkling that this wasnt something that could be cured. He was lovely, but very honest - I still remember his words which were ''we can fix bones, we can stitch skin, we can transplant organs - but we cant fix nerves''. To be honest, I needed to hear it because I was at the stage of scrabbling around still looking for a cure. Then I got to the Pain management course and one of the first things they said was to stop looking for a cure. I really do hope that you get lots out of it. Dont get me wrong - I am still unable to work, physically the pain is still there as much as ever, and I am still on various meds, including morphine. But the way I now live my life and the way that I can now manage my pain to some extent at least gives me a sense of control that was sorely lacking previously. Also, understanding why the pain occurs and what will make it worse helps. It can still be really unpredictable and I still have random 'flare-ups' that I am not expecting and can leave me housebound - BUT, importantly, for me, is the knowledge I now have to know not to feel panicky when that happens and be fearful of them. I am 48yrs old and the thought of spending the rest of my life in this pain terrified me at one point, and it took me some time to accept it. But now I'm ok with it most days. I have a different life now. Not what I was expecting, nor necessarily worse or better - just different x
I've lived with chronic lower back pain for many years, apart from the pain one of the most frustrating things is that their very little damage to my spine. Good thing in away of course, but it would be nice to have something to point at and say that's why it hurts so much.
Being unable to walk let alone work because of the pain, has even more draw backs when it comes to claiming benefit when theirs little damage to shiw. Unfortunately back pain has the stigma of being the skivers disease. If only their was some way of showing how much pain one is actually in.
As with many things in life, ones attitude towards a problem is very important. I take one day at a time, try not to worry about things that i have no control over and hold some painkiller in reserve for when the pain gets to much.
Hi Tourk yes it is frustrating when there is little damage to your spine as shown on x-ray and scans,but the Pain is real but the scans don't show pain. I saw a spinal specialist and he wrote to my GP saying quite unremarkable examination and advised me to get back to normal activities and said you have got to remember you are 57 not 27.So that is what you are up against,we are not skivers but how do you prove it? I try to keep moving as much as possible and find it helps a little, pushing myself even though it hurts it helps loosen things up more but it is tough. I try not to take painkillers if I can as they don't really work for me and am worried about taking stronger and stronger ones and becoming dependent on them.We may get an answer some day.take care
Thank you for your message. Unfortunately I had no choice about going under the knife. I woke up one morning paralysed and unable to walk. I had apparently cauda equina syndrome which is an orthopaedic emergency from which you can be paralysed for life. So, you see, I had to have the 2 operations. At the same time I had terrible pain in my right hip which prevented me from walking. However, even though I knew I was in agony nothing showed on the MRI. after nagging the consultant constantly he agreed to give me a hip replacement. He told me that there was nothing to show on one side of the joint. However when he turned the joint round after surgery, he found a groove the size and length of a ballpoint pen. My husband asked him what that meant for me, to which he got the reply 'your wife has been in agony for 2 years'. I knew that! Fortunately when the other hip started hurting - he removed it straightaway!
bye for now, morphalot
That sounds all to familiar. Yes the pain is real. But one feels as if it's down to you to prove it.
I'm 57 as well have been in pain since 1982. Don't worry about using stinger painkillers I've been on them for a long long time. They make it bearable most of the time. I use some of them as what I call floaters. Only use them when it gets to much for me. Theirs no need to suffer more than you need to.
I find one of the worst effects of long term pain is that it can be quite isolating. Don't feel up to going out meeting people spending time in bed to rest my back.
I do stretching exercises laying down just to keep movement.
Your not alone people do care about you.
Get your self some propped pain killers and try to live as a normal life as possible, try not to worry about what the doctors say, some just panic when theirs not a simple cure lol.
Look after yourself.
Hi Tourk, you must be very strong mentally to deal with your pain for such a long time.Yes it can be isolating, people stop asking for you to join in with anything.Can you give me any recommendations for painkillers as I don't know what is out there, and I have a telephone appointment with Dr next week.Have you been on a pain management course? I am on a waiting list for one.There are lots of sports on TV this weekend (if that's your thing?) have a good weekend take care 😁.
Hi Chriskros I take Oramorph and tramadol four times a day and use Co-codamol and gabapentin as floaters. I can't can't take the gabapentin to often as it makes my fingure tips painful and the skin starts to come away from my nails. Great way of stopping me from taking to much lol.
You do get use to pain killers if taken regularly but I find it pretty easy to control them, and knowing their is something else I can take gives me somewhere to go when it gets to much for me.
I get by most ofvtgdvtkme by taking each day as it comes, if I need to stay in bed for a few days do be it.
The last few months have been the hardest for a long time as I've been going through the PIP nightmare. It made such a difference when I was awarded DLA did life only to have it thrown in my face by are wonderful goverment. Still got to get though it some how.
I personallydidn't find pain management that helpful that's down to me more than a statement about the pain clinic. I learnt a lot about pain management when my fiance was dying from cancer.
Not a great sports fan, more into craft based hobbies but loosing the use of my hands so it's s bit limited now.
Have you got any hobbies?
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