Calceolaria10 years ago

Hi Charles. Sorry to read about your incessant pain. I too have DDD amongst other things and the first thing I want to say is that I have been improving over time, something I never though would happen. The spine clinic put me straight about DDD in that despite the name, it is not a disease and is part of the degeneration of discs which occur as we age, from our early 30s. Many people have it but do not have pain.I have tried all the pain killers which did not work and which had negative affect in every case.

I'm going to stick my neck out here and strongly recommend a book called Healing Back Pain by Dr John Sarno. Everyone on this site maintains that what works for them does not work for everyone but Sarno's theory about back pain being caused by what he calls Tension Myositis Syndrome was a real breakthrough for me. You have to be open to his theory but it just makes so much sense. He is a Rehab Specialist in (of course!) the USA, started out by wondering why people did not feel better from drugs or therapy, why some scans showed damage but no pain, others showed no damage but there was crippling pain. Worth a try?

Harrison27 in reply to Calceolaria10 years ago

Thank you for the reply, that's great news that you are seeing some improvement. Has it taken a long time? I do have the book you recommended and I did read it when this first kicked off so I was maybe not in the best frame of mind at the time. Does the book not recommend that you buy DVDs etc, the book I have is quite small (about 200 pages), I will need to get it out again and try reading it. Thanks for the reply, much appreciated

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Boozybird10 years ago

These muscle spasms episodes are dreadful and can linger in the mind long after the physical effects have gone! If you are making progress then you may be like many people who just get flare up from time to time and learn how best to manage them and what you have to do to get your back right again. I guess you could ask physio and GP when you can expect to give up the meds as an indicator of progress? Try everything and learn about your back. What makes it better and worse. Above all, try and have some hope. Personally, I didn't get on with the dr Sarno books. They really messed with my mind. I felt he was basically saying mind over matter even recalling how one patient used to go driving for hours or running when he felt his back coming on. Really!! There is now good evidence that even though MRIs may not show 'anything' linking pain to damage newer machines can 'see' tears in the outer fibres of discs where nerve ending sit and can even start to grow into the disc causing pain. Disc nutrition therapy may well help to rehydrate ailing discs in the future and cell therapy may well finally help us all. Best wishes,

Nellie_boy10 years ago

Afternoon Charles,

Sorry to hear of your continued pain but I am here to offer a little ray of sunshine.

I too have had many years of back pain. Ruptured discs, surgery to repair and clean them failed, further surgery made little impact either, now no seld respecting surgeon would touch me for risk of permanent irreparable damage.

About three years ago I was in a particularly bad flare up that seemed to last forever and steadily got worse. I was advised to sell my house, my business and prepare for life in a wheelchair - the solution seemed to be copious amounts of medication and simply to take even more on the worst days.

I didn't accept that prognosis, I have two young children so I if I was going down it was not for the want of finding another solution to improve my standard of living. I took to the air to see specialist surgeons - they all told me no chance of surgery but they also all told me I had to attend a Chronic Pain Management course. I was assessed for that, I remember the day well as we lost over 20 minutes of my interview time as it took me so long to walk to the 20m to the room. I joined the programme and have never looked back. I completed Flex, Re-flex and then attended the Mindfulness programme (MBSR).

These programmes absolutely changed my life around. I have gone from a wheelchair to now being able to play football with my kids, cycle, take the dog walks. Whilst I cannot claim to be pain free it is certainly manageable and I know how to react to the early warning signs, I am not only proactively aware but I am reactively quick enough to limit any damage. I cannot recommend CPM and MBSR highly enough. I would even say some people have to do them twice - I was lucky, it was the right support and my head was in the right place at the right time for it.

So, there is hope and there is help too. I know I am one of the lucky ones as it all fell in to place for me - I am now pretty much medication free - but it can happen for others.

Keep your chin up, respect and be kind to yourself and you will have better days ahead too.

All the best,

Nellie.

Harrison27 in reply to Nellie_boy10 years ago

Thanks Nellie for your response and the positive message you have. I live in fear that I may end up having to leave work, sell my house etc. I am waiting to see the pain clinic, the last time I was there they did offer me a residential course in Bath, but when I was assessed they felt that I had a good mindset to pain and I was dng lots of the things involved in the course (I guess they need to prioritise patients), and I was no where near as bad then. I am very interested in the flex , reflex that you done. Is this an exercise programme? Where did you do it? I wish there was something available online which could even offer a start. I'm so pleased that you have made such progress, it's great to hear positive stories.

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Nellie_boy in reply to Harrison2710 years ago

Hi Charles,

I heard very good things about Bath and the treatment courses they run. That's unfortunate they did not include you but one decision like that would preclude you in the future. I know of people who have been omitted at one stage but attended at a later date. Peoples mindset changes all the time with Chronic Pain so don't rule out the course. I actually did all three of mine despite it categorically being doubted whether I needed it or whether just a few 1-1 sessions would cover the info I needed.

I did the course at the Astley Ainslie Hospital in Edinburgh. It's a really good course. The Flex-Reflex may just be a name that AA used as they deliberately changed the programme in to two halves. They felt not everyone needed the full umpteen weeks and this gave them better numbers and targeted the right patients for the right treatment. It also gives a break between them so patients are not blocking out months solidly. The two together, with a few additions, cover the Chronic Pain Management course as delivered normally. The Mindfulness course on the back of it was excellent too. You don't need to do CPM to do Mindfulness and I would recommend that too.

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Nellie_boy in reply to Nellie_boy10 years ago

That's unfortunate they did not include you but one decision like that would*N'T* preclude you in the future.

Note to self - read what you right before hitting *send*

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Harrison27 in reply to Nellie_boy10 years ago

Thanks Nellie. I was imaging the flex - reflex to be some sort of exercise or contraption to be out in. I do hope that either I recover to a more stable state and if not I will be considered for a pain management course. Thanks agin for replying

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Calceolaria10 years ago

The suggestion to read Dr Sarno was for Charles, boozybird, as it was his question. As I said, everyone is different and I thought he might be interested in looking at the idea of the role of muscle tension. I don't fully subscribe to it myself but there was enough there to help me look at things from another angle, one which helped me and if it can help someone else, then it's worth a look. In my view.

Nellie, what is Flex/Reflex please? Is it a form of stretching ?

kebsa10 years ago

it certainly is possible for things to improve again after even a lengthy flare up, and in fact getting older can actually help from what i have experienced recetly. my back is really crap- i have a soliosis that was diagnosed as a teenager, then i worked as a nurse for 30 yrs with lots of heavy lifting- now i am wheelchair dependant due to MS and also by the fact i am an amputee. I have had severe chronic pain issues with my leg, that led to the amputation after lots of surgery aand i have lots of wear and tear in my spine- then a few yrs back after the MS became an issue i had a fall an landed very hard on my butt- its seems some of my meds had led to osteoporosis and when i landed on a concrete floor, a sustained 3 crushed lumbar vertabrae- it led to severe pain and i was found to have spinal stenosis as well as disc bulges nerve impingement etc. that was back in 08 and recent scans show that while my back is still pretty messed up the disc bulge and spinal stenosis are less prominent, not worse i had worried would happen- when i discussed it with my doctor he pointed out that the damaged discs tend to dry a bit which makes them shrink and can actually reduce some of the pain if it is impingement related!

the onlyother thing i would say though is that if you have never been to a pain clinic it would be worth considering- i mention this as the one issue that is of some concern with long lasting pain is that some chronic pain syndromes are related to changes that occur within the nervous system in response to long lasting pain. complex regional pain syndrome, CNS wind up etc come to mind as they are issues i have had to deal with. if this is the issue it may need a bit more help than your GP can manage just simply because its a very specialised area but even so, the pain can and certainly does improve even if you have had lenghty bad periods. i having been dealing with chronic pain now for over 30yrs and there have definately been times when life has been pretty uneventful and pain is a background issue and then other times where it has flared up and ben pretty tough -i have had a bad period recently but one thing that helps is knowing that i have been here before and it has eased before so i believe it will again

good luck, i hope things improve for you

Harrison27 in reply to kebsa10 years ago

Thanks for the great answer. I am so sorry to hear of the troubles you have and it makes me feel guilty for moaning about my problems. Your answer is so informative. I always did wonder if you went through a lengthy flare up, if this could set your nervous system into overdrive, almost making it way more sensitive than it should be.

I did read once that some have tried treating this with quite high dose opiates, almost to shock the body back into the way it should be acting (not sure how successful that was though)

I am currently waiting on a pain clinic appointment from the NHS (waiting times are awful up here in Scotland, so I'm actually trying to find out how much it is to go private as I can't go on like this for much longer). I currently take gabapentin 1800mg a day, but I'm not sure if pregabalin or something else would work better. I just don't know if my issue is muscular or nerve related (although I am also on 60mg of baclofen daily).

I have also heard of discs sometime going back in, but was not sure of how this happened so them drying up makes sense, I did wonder how much fluid was in them and thought surely it will all come out and stop irritating my nerves eventually (sorry that was my simplistic thoughts lol).

I hope your bad spell is over and thanks for the positive message, if I know I could get out of this flare up at some point, it would makes things easier to deal with. Thanks again

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kebsa10 years ago

glad yu found it helpful charles! As for my issues being worse than yours, thats not possible to say, As they say pain is unique to each of us and its enough to say that the pain becomes a major influence in our lives at times. i only describe my situation as a way to say that i do understand your issues to some degree. I have often thought too that with Chronic pain while severity certainly is part of the issue,the persistence of the pain is the bigger issue- its that which can wear down coping mechanisms etc. It's amazing what we can put up with short term yet a much smaller issue can wear down a persons resolve quite effectively. I liken i to the power of water- now you think i am mad! but basically everyone has heard the description of something being weak as water and it is true that if you just pour a glass of water into the sink all that happens is that the sink gets wet, but if you take the same stream of water but make it a flow over rocks, then over time it starts to shape those rocks and given enough time you end up with the grand canyon!! SO, its not so weak after all! hope that makes sense!

Your comments about the system going into overdrive are not too far from the mark, another part of the theory is that while we have been brought up to b elieve that the nervous system does not change once we are fully developed, that the nervous system will not repair in the case of serious injury- well that is now being recognized as being inaccurate- there is a fair degree of what is referred to as plasticity, where it can change according to injury etc. I think part of the issue with CNS windup is also that nerve pathways alter a little so that pain from the injured part is effectively transmitted more effectively- not describing it very well here but you can find information on the net about it if you look up terms like "CNS wind-up".. Back when i was originaly going through the pain unit i know i was told that sometimes if they can adequately supress the pain for a lengthy period (and around 2 yrs was wha was mentioned to me at the time) then the nervous system almost resets, those rapid transport type pathways are no longer needed and therefore breakdown- that is very simplistic. I think ideas have developed over the yrs in relation to this and i think that the use of ketamine infusions that some of us have regularly are intended to help. I know ketamine is used to help re set our opiate receptors when we have built up some tolerance and they want to be able to go back to lower doses- i have experienced that one and a single infusion did help my situation at the time.

i understand your frustration at the waiting times- i live in Australia and in my state there are only 2 large multidisciplinary pain units, waiting times to get in can be 18 months! We definately need more pain clinics but it is an underfunded area -anything to do with chronic health problems seems to be short changed in the funding stakes! Bu an interesting poster they have up in the clinic i go to lists the number of missed appointments, where patients do not cancel or reschedule if they cannot attend and it amounts to on average approx 150 per month- the poster goes on to say that the waiting list could be just about cleared if those appointments were not wasted- so if we don't do the right thing we are actually adding to the problem- i always knew it was a factor but i was staggered that it was that bad. If you do seek out other ways of finding a pain unit i would simply advise that it is highly preferable to find a multi disciplinary clinic, where they use a team of health professionals to assess you fully and then discuss their findings as a team to come up with a plan for you- it is a rather lenghty assessment process and can seem frustrating because usually you have been waiting for ages to get those first appointments and you just want action but please work with it as this is most definately the most effective approach in the long run. Also though, i did not find the first pain unit was working well for me, everything seem almost confrontational and abrupt, and i had no issue waiting for them to finish assessments but i had hped for at least some kind of help to keep me going during the process- i kept getting referred bak to my gp for this which i though was odd, i kept getting the feeling they did not know what to do with me, eventually they referred me to the other pain unit in our state and for the word go every thing was different -i was eventually given a surgically implanted spinal medication pump. called a synchromed pump (by medtronic), the pump reservoir sits in my abdomen and has a catheter that runs under the skin round to the spine and then into the area where the fluid flows around the spinal cord and nerves. My pump has a mixture of morphine and clonidine and it is far more effective than taking it orally or by injection. other forms of adminsitration mean the drug goes to the liver before the site of action and a good perscentage of the drug is metabollized before it ever does anything and then the rest has to cross the blood brain barrier. By giving it diretly to the nerves at spinal level it means that much much smaller doses can be used and are more effective. I had been on massive doses of slow release morphine and while i can't really discus mg here, it was basicaly only about 5% of the oral dose i had been having and it was the first time in a long time i had anything close to pain control. that was 12 yrs ago and while the pump has needed to be replaced when the batteries died, generally it is a case of refills every few weeks- the pump can be programmed to give a bolus at times such as for me late afternoon as i tend to have more pain in the evening- i can't alter it though. the clonidine has been a recent addition and means they can use a smaller dose again as i had slowly increased over time, it also helps because it deals better with nerve related pain.

i know others who have done well with spinal nerve stimulators. You mention being on gabapentin and wondering if pregabalin might be better. i certainly found that pregabalin was a bit more effective and allowed a smaller dose. The 2 drugs are closely related ie gabapentin is a precursor to pregabalin. the swap certainly helped me yet i know of others who it did not make a difference but there is not harm in asking

lastly, i would strongly advise that once you get access to a pain unit make sure you keep in contact with them even if you don't think they have helped much to begin with- don't forget that this is a growing area of medical science that really has still been in its infancy but has made some big changes over the time that been nursing, and particularly the last 15yrs or so- For me the addition of drugs like pregabalin and gabapentin made a big difference from the previous drugs like tegretol and As i mentioned before i initially had morphine in my pump but these days i have had clonidine added and this is a relatively new use for this drug (usually intended for high blood pressure but helps with nerve related pain in this situation!). So there is alway the chance that even if you did not find it helpfl initially, ongoing contact will give you better access to treatment as new ideas come through

anywya thats fa more blathering than i had intended, sorry for all the ttypos, but i get a lot of spasms in my hands at times from the ms

karen

Harrison27 in reply to kebsa10 years ago

Hi Karen. Did you see my response, my iPad seems to be playing up x

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Harrison2710 years ago

Karen, not sure if you can see this, but the reply to is not working. I will need to reply when I get to a PC (I'm on an IPad just now, it's such an amazing answer and I would love to comment properly. I can't even seem to be able to private message you either. I'm just so great full for the time you spent replying.

Jamie1869 years ago

Hi your pain is a real bad experience, especially over 22 years, I'm going to try and cheer you up. In 1972 I had an accident playing rugby, after suffering chronic pain and sciatica for 6 months I was admitted to an orthopedic hospital staffed with young beautiful trainee nurses (which did not stop the pain, but certainly cheered me up) after 6 months I had a laminectomy on my back, the same time as an eighty year old character, 3 very painful day's later we were both up and walking about, 2 weeks of pyhsio released to face the world during an Indian summer. No pain, great memories back home to my young pretty wife, I'll leave the rest to your imagination, Ever since until 5 years ago no trouble no pain with my back. I hope you have the same results (leaving out my wife) best wishes for a happy, pain free future.

Be Lucky

Jamie 186

Fedupwithmybackpain6 years ago

Sadly pain never goes away and the meds in the long run don't work,they merely mask your pain.

What I have found to be helpful is eating a lot of natural foods cutting out a large amount of sugar and meat from my diet and regular exercise, means I am better able to cope with the pain, it requires a lot of tudyingband analysing how your body works and making adjustments till you get to a place where you accept the pain is part of your life, but it is no longer in control of your life, you are, I hope that makes sense.

Skipper556 years ago

Back pain is a mongrel I was in a head on collision and had bone scrapped off the hip and put into replace discs prolapsed between 3 vertebra . 14hours surgery bad before surgery bad after . I found the following treatment to reduce pain to zero except sitting in chairs to long. So I swam on my back doing 30 laps plus every 2 days in a warm 30 meter pool . The back muscles are dumb hard to rebuild use flippers and a kick board on your tummy just the more you do the stronger the back , I was told surgery would last 10 years I have gone 19 , now 2 Panadol each day in the morning and afternoon , the big one is Zanax 2mg a day keeps the back muscles from freezing . You may need only 1.5mg or 1 mg but it is critical . You must keep the swimming up after 2 years pref 3 but then you should be right with a couple of times a week at the most but keep it strong ie back.