Hi Gerry,
Thank you for the warning, i do appreciate it, I will speak with the nhs pain clinic when i go and see what they say about it, as far as what ive seen online they do use this LLLT in private physio, sport recovery clinics, that doesnt mean alot as an osteopath claims to cure most things but made my situation worse however they must see some benefit to people to keep using the tools.
I think the problem is the normal NHS drs dont do anything particularly helpful (in my experience) 6yrs on and all ive had is various anticonvulsants and facet joint injections which were useless not to mention BAD side effects from the pills and physio who give up on you if ur not better in 6 weeks. It leaves people in a desperate situation who will try anything, however as many scam things there are out there some things do seem to provide benefit as much as Dr prescribed things. Accupuncture used to be known as a quack thing but now NHS provide the service.
One thing that makes me seeth is the pain dr i saw was so needle happy that he said he would do the cervial facet injections (comes with side effects including possible paralysis) he basiaclly said if i didnt have them he would not help me at all. I also told him about sphenopalatine ganglion block which is basically numbing a ganliion in your face and it can be done either injection through your face or swabs left in your nostrils for 45 minutes, he again wanted to do the injection and not the pain free method if the neck injections didnt work. At no point did he mention lidocaine patches which have great reviews and barely any side effects from what ive read. I had to read that for myself in an American book and when i questioned GP they are available from the pain clinic.
I read an old book by Vernon Coleman called how to stop your Dr killing you which was quite an interesting insight into how drs are trained, the guy has a major air of disgruntled'ness but its a good read and confirms the way ive come to think about Dr's (they dont think for themselves, have major god complex's and its run like a business, not a service to help you). The best healthcare proffesionals ive seen are either trainees, or lower level jobs such as nurses, physio's etc.
Yes, it's all true and regretable. The services are not up to scratch for our condition, and it's little wonder we become skeptics when everyone else can't praise them enough. It's a by-product of lack of appreciation and knowledge about C/S, unfortunately. Still and all, when it comes to fixing a broken leg, or having a brain op, or just having dental work, I know I'll always choose the accredited professionals, because they are legally accountable for any misdiagnosis or treatment mistakes. Outside of the NHS supported services, there is little accountability, and profit tends to be the most common motivator. Where treatments are perceived as doing little harm, even when they are unsuitable, there are many charatans out there only too eager to cash in. I'm not saying that's the case with the Laser treatment, but it should be a consideration before anyone makes what is ultimately a personal choice. I think 'safety first' is always a good leveller, especially when the frustration of the failure of normal treatments kicks in. It only takes a minute to make a decision, but it can cause years of regret if it's a bad decision. The implications shouldn't be overlooked in favour of some desire for the Laser treatment to be the right treatment.
One thing I don't get about Laser treatment, and I know little about it, is this....if it only deals with the pain (the symptom), and not the cause, how can it affect future re-ocurrence of symptoms. And if C/S is known to manifest as re-curring pain 'phases', how can they tell if the Laser has been effective, or if the C/S has just settled down. It's very open to having any results misinterpreted by co-incidence, just like a lot of other treatments for C/S. But, it's not my money, so I guess my skepticism only applies to me. When it comes to 'placebos', I'm more inclined towards chocolate !
Chocolate is good! I think the laser promotes blood flow etc to the area to help heal damaged tissue but I don't know a lot about it to say for certain. I did just speak to a local physio clinic and she did say that it's only 1 tool in treatment, basically giving me the impression that although it is a valuable tool it's no miracle cure and reserved for patients that perhaps can't have accupuncture or who have metal in them, I certainly wasn't left feeling like this will be the answers to any prayers but in all honesty if she gave me that impression I would have thought it was more about my money than my health. She said if they don't think they can help they will say so and the cost of the sessions for overall physio aren't to much so it's worth a try. I will be very cautious of any manipulation which they also offer as I've had that before and it flared stuff up.
i will post back if they use the laser on me and if it has any effect good, bad or ugly!
Hi Charlotte
I'd be happy to read your report back if you go ahead. I'm actually fairly open to the idea of exploring new treatments, just never at the expense of a reasoned approach which puts patient issues/interests first. And if it does help with your symptoms, I'm sure there are many on here who would also be glad to hear, so they can make their own decision. I hope it works, because that bodes well for everyone.....and would put my skepticism in its proper place. Don't be afraid to ask their opinion on long term effects, and analyse their response carefully before committing. Any evasiveness in their response should be cause for reflection.
Otherwise, good luck. I'll look forward to reading your appraisal.
Hi John
Thanks for the info. I'll do some research, now my interest has been tweaked. Somebody has to do the awkward questioning, not just accepting on face value......I hope you'll appreciate that. There's no medals for being a thorn in the side, but if the Laser treatment is as good as suggested, a little pre-skepticism won't hurt its potential. I have to admit I'm a bit perplexed why it hasn't been mentioned previously in C/S forums, but, I suppose everything has to start somewhere. Seems a bit like the 'cold' laser treatment has crept in the back door without anyone noticing. I need to do some research before deciding whether to raise a flag !
No probs Gerry,
when I first heard of Laser Therapy I weas a bit skeptic myself
but I was prepared to try anything as my pain was so bad
if you google LLLT and NHS there are lots of consultations/reports going on and from what I've concluded I think its only a matter of time before its offered on the NHS
pity its took word of mouth for this treatment to get around
Always good to be skeptical and question things. I will defo update when ive seen the physio. I did ask on the phone regarding possible long term damage and she said its such a low laser that its completely safe, i will of course take that with a pinch of salt.
I found this link:
http://www.uhs.nhs.uk/AboutTheTrust/Newsandpublications/Latestnews/2014/Southampton-doctors-pioneer-use-of-soft-laser-for-cancer-patients.aspx
Read the article. Interesting. It must have had preliminary testing on long tertm outcomes for them to use it in cancer treatments at hosp. Definitely worth investigating further. Good luck with your visit.
Hi John
'but I was prepared to try anything as my pain was so bad'
I know the feeling....and it's not just the pain, it's also the social/work implications that accompany the pain. C/S can be very 'heady', the way it affects so much of what is normally taken for granted...and it constantly affects interactions of all sorts. Difficult to define, and difficult to explain, leading to dismissive responses. All these issues really only help to boost the cultural negative overview we must contend with....and that certainly doesn't help with pain toleration in any sense. The battle is fought on many levels, so to speak.
Personally, I know I can exaggerate my own subjective perception of pain when I'm aware that I am contending with someone else's denial of my experience....and that's something I think about a lot and try to unravel , because it seems like I'm allowing a 'default' attitude to govern my toleration levels. When the meds don't work, it's all too easy to adopt a 'try anything' approach. Understood. But, to me, isn't that a bit like allowing the failure of the meds to call the tune ? I'm not suggesting an alternative 'mindset' remedy, but I'm inclined towards questioning why my normal rational approach to anything is being dominated by the failing treatments created by others who don't even have the same experiences.
Just thinking out loud on the philosophical aspects that affect us.
I read a paper that explained soldiers with chronic pain suffered far less than mere mortals due to the extensive training they had received from the army as they had a superior brain when it came to controlling thier own pain, perhaps you would be interested in reading Dr sarno's book which is on amazon for a few pounds and is about retraining your mind or also something called the TMS recovery, free info and free audios on wiki again to retrain the brain!
I dont think its failure of meds on thier own moreso the failure of NHS and the way Dr's initially deal with pain. If chronic pain is partly a mindset and as people theorize a link between a fear of the pain and the onset of the same pain then Dr's should have CBT available on emergency appointments, when joe blogs goes in to his GP complaining his pain from "insert injury here" has exceeded 2/3 weeks then he should be rushed to CBT intensive course to train in how not to let the pain get worse. Surely as much as this would cost it would save thousands of pounds as chronic pain is probably one of the most costly areas of the NHS. If the NHS did yearly mot's on thier patients to check vitamin levels etc then that again would probably prevent alot of problems, people with low calcium, low vitamin d etc are more prone to bone degeneration, lack of vitamin d has been theorized to be linked to MS, its certainly been linked to fibromyalgia. Vit B12 is linked to nerve issues, iron is linked to heart problems and a whole host of others. Unfortunately these tests are not available until such time you feel sick enough to get to a DR by which point damage could well be permanent.
I'm not so sure about the 'chronic mindset' being responsible for chronic pain, rather than the condition manifesting the painful symptoms and the mindset evolving naturally from that. For sure there are some who will exaggerate or even imagine their symptoms just because they have been led to believe that's what will happen. But they are a small minority, deluded by the culture they accept, and that shouldn't reflect in a negative way on conditions which actually do manifest continually, or chronically, with real pain. This is the problem.,..both groups exist, and the culture is a little wanting in separating their respective needs. One group needs mindset altering, and the other group needs mainstream medical treatments.
The trending tendency today in Neuroscience is to attempt the re-education about pain first, perhaps to separate the wheat from the chaff, and that could be a huge waste of time for anyone with a condition which requires more direct attention. So, I think that method of approach victimises anyone with a 'real' chronic condition, and delays the treatments in favour of first sorting out any unwarranted doubts. I think that is evidenced in the long protracted referral system, where we might get to see a consultant after several weeks, and perhaps several pre-tests. It looks like a system that purposely delays because that allows time for minor issues to resolve naturally , but penalises 'hidden' chronic conditions where more immediate attention might be required. The overview seems to be...'If they're still complaining in a months time, we'll have a closer look'. And I think that's an overview which is peculiar to our own precious, supposedly best in the world, NHS. Over-riding the patient presentation for difficult to define conditions has become a bit of a habit, in the same way that trying to get a GP appointment has become a test of wills. Yet another Blairite inheritance !
RantRantRant...sorry.
Hi Gerry,
I didn't mean a chronic mindset causes pain but they say that a pain which starts after an injury or just on its own then becomes chronic when we become so aware of the pain we are fearful of the pain which enhances a negative loop and a never ending cycle. I am not sure I whole heartedly agree with this theory however this is what Drs say, the Dr gave me the paper on the soldiers who combated their pain more effectively because they had a mindset to do it. He said that the nerves feedback to the brain and when u become so aware of your pain or dread it becomes a viscous loop. What im talking about is if that is their final answer on chronic pain with no visible cause then they should put their money where their mouth is and intervene with behavioural therapy on an emergency basis, this could help or surely it could prove to them that their theories are incorrect and they are just passing the buck. I do believe a persons outlook does add to a cycle of pain whether that's positively or negatively however I have spent months before laying in bed at night telling my brain that I'm not in pain in the hope it might take the same view if I repeat it enough and unfortunately it didn't work for me!
What would be good is if they offered a quicker pain relief system, pain supposedly perpetuated more pain hence chronic so surely if they relieved your pain quickly and efficiently from day 1 not 2 years later when they finally send u to a pain clinic we might all have a better chance. During which period thy could investigate for the cause which I believe in most cases there will be but its just not picked up by current methods of testing.
I bet any Dr who lived with his wife, daughter, mother etc and saw them in the kind of pain that people are living with daily would treat them very differently, I would assume they would have a plethora of tests, the best meds with the least side effects and any beneficial procedures there were.
And possibly also, a cabinet in the bathroom with an emergency supply of morphine for the rough days !
I see what you're saying now, about the mindset loop. I've actually been debating online on some Pain Science sites, about the new 'emergent' theory of pain, arguing that it relegates the presented patient narrative of pain as insignificant, compared to the requirement to deal only with the obvious. The 'emergent' theory, I believe will have consequences in the future for those with 'hidden' chronic ailments...i.e. having to prove their integrity of narrative before being offered treatments. Science fiction nightmare, as I see it.
Regarding the mindset loop/continuance....yes, that can happen with some patients with a vulnerability to patternising their default behaviour. The illusion tests (rubber hand / nail in boot / mirrored hand etc) are being cited as evidence that we are all vulnerable to believing that an imagined threat can actually cause pain. I don't agree with that. I think illusions cause 'illusionary' pain which can be easily rationalised away....unlike your efforts to think real pain away.
I'm coming round to thinking there may be a way to rationalise actual pain, and by so doing, possibly increasing toleration levels, because the pain fear factor is reduced...if you know what I'm getting at ? For instance, we can see an injured hand, and rationalise its possible healing prospects....therefore we tolerate the pain easily. We can't see internal injuries, can't forecast healing prospects...therefore the pain fear factor goes off the chart...it's uncontrollable, and the perception of pain follows obediently. Simply knowing the dynamics of the injury should reassure us and help settle that fear of the unknown factor, but like you say, that info isn't always given to us by those who control the investigative technologies. They keep lapsing back into 'The less they know the better' mentality, without apparently realising that we're exactly the same as them, and we can handle the messy details. Some of us take pride in knowing the details, especially when we have to do the rationalising ourselves....or be left flounderting in the medicated confusion they usually offer. I'm sounding like 'Disgruntled with C/S' now ! Perhaps a little mindset re-education wouldn't hurt too much !
PS....
Last few days I've been reading the blog posts of Dr. Michael Negraeff. He's a respected Canadian Pain Specialist....I came across him on Body in Mind site. He has a spinal condition himself, and wheelchair bound. I feel a real resonance with how he wants to change professional attitudes to chronic issues, from entrenched dismissive to engaged enquiring. He's a breath of fresh air. If interested, just google his name and read some blogs....there's a great vid as well of a recent lecture. We should get behind people like him if we really want to see improvements in the culture....he gets my support, and I'm Mr SuperSkeptic.
Thanks Gerry I'll definitely look that Dr up and read some of his blogs, It's very interesting what u say about being able to see a cut heal for instance where as pain coming from something deep inside and imaging tests not necessarily giving a clear picture what is wrong no doubt causes a problem with the loop situation. if someone told me your pain will end in 2020 I think I could deal with the pain much better, that would purely be down to gaining some control, knowing something rather than being stuck in limbo land. I think some form of control is what patients need to stay strong and positive all the time. When you feel like a bystander in your own health it makes you more vulnerable to negative moments and infuriation with the system!
Absolutely. And that's a huge problem with anyone trying to come to terms with C/S. The same defensive defaults don't apply, as with normal injury/disease, leaving us vulnerable to the downward spiral, seemingly with little to grab hold of to steady ourselves. It's a real problem which sometimes becomes the main issue. I'd always try and advise anyone with C/S to try and rationalise the 'cause and effect' of referred symptoms, just to help with gaining some little control over what happens. For myself, when I got on that cycle of thinking about the symptoms in that way, some sense was restored, after many years of the usual frustrations, and a more positive overview evolved in its own time.. It's difficult to say that to someone who's experiencing the worst phases, because I remember when something like that might have sounded shallow to me. But, it does have an effect. Small understandings can offer up minor improvements, and sometimes that's all that's needed to open up self-manageability options. I still always feel that some offence can be taken from that seemingly over-simplification kind of talk, but it's worth the reputational risks.
PS....
Just been thinking about the 'soldier' analogy you mentioned. For sure, a wounded soldier might tolerate great pain, and they do, because they know the whole country, and its resources, are behind them......and their injury occurred for a good cause (hopefully)....and their injury is usually obvious. I sometimes wonder how that 'fortitude' works for them when they are injured in a crisis with muddled political justifaction, like on the streets of Belfast, or even if they get accidently injured on a training ground in Dorset, or are attacked by some looney terrorist as they walk down the street in London. It must seem pointless and depressing.....more like anyone trying to figure out why they have C/S imposed on them out of the blue.
I remember my Mum saying to me, as she took me to the dentist when I was a 10 year old..." Just think what it was like for those poor prisoners in the concentration camps", maybe because I had recently said something. And it worked, but only because the pain also disappeared after treatment. If there is no reassurance about a 'healed outcome', the metaphors simply don't work like they normally would. A 'healing expectation' mindset, and a 'no healing expected' chronic mindset, are two very different things, and any comparisons can not only lack resonance, but can actually feed into the 'chronic' mindset in a frustrating negative manner, because outcomes will be continually defied in reality. I think it's best to accept the chronic overview as soon as poss, because, if things can't get much worse, they can only get better ( not too sure I can support that statement, but you probably know what I mean !) . Chronic tends to have a negative cultural undertone, but really it just means ' over time, with no known resolution', and basically we already know that.
There's a movement afoot to change 'chronic' to 'persistent' to soften the negative undertones, but that makes absolutely no sense to me whatsover. 'Persistent' quite obviously means that an issue had a 'resolution expectation', and it has 'persisted' beyond that date. Chronic has no 'resolution expectation' attached, so a chronic patient can't reconfigure that into a less threatening overview. Another example of mindset altering nonsense, perhaps !
Hi I am new to this site. I have had chronic neck pain for years and have just had an MRI showing several disc bulges at C4,5,6,7 plus T1-2 to T3-4 . The report is full of words I know little about, have googled but still a bit in the dark. All I know is I am in constant pain, headaches which don't go away, my neck and shoulder cracks and pops audibly and it makes me feel at times like a real moaner but when it's there the minute you wake and even wakes me most nights it is rather trying!!! My Dr has given me Gabaprentin 300mg to take 3 times daily...took 1 first day and won't take anymore I felt spaced out and fell asleep!! Only thing I find that works is Paracetemol , Ibuprofen, and 30mg Codeine. I was sent to works Physio who gave me 3 sessions of torture before I stopped and insisted I had the MRI. I had an MRI nearly 6yrs ago which did show 2 small disc bulges, physio did not help then and I had 6 courses of acupuncture which was marvellous. I do think the physio this time has made my pain much worse. If anyone is able to offer any advice as to what I should try I would be so grateful. Many thanks. Caroline
As promised I said I would update on my progress with low level laser therapy.
I started seeing a physio who uses the laser along with other tools.
Im on my 5th week now, the first 3 sessions i had the laser and now weve moved onto accupuncture and manipulation.
Well as of the moment I can say it hasnt worked for me, the laser didnt do anything, week 4 when i had accupuncture and manipulation i thought i had lots of improvement and was super excited that things were helping however week 5 accupuncture and manipulation again i am back in lots of pain and stiffness and feeling really bad.
week 5 i was feeling great prior to seeing him but straight after i felt bad and have done since then which is 6 days. I also got tingling in my face in new places after last session which luckily have gone now but that was a bit scary weird. Im seeing him again tomorrow and hoping he can undo last session but i am losing faith as i was hoping to see at least a marginal improvement.
So to sum it up, i can not at this moment in time reccomend low level laser therapy nor can i reccomend manipulation or even accupuncture.
Sorry the outcome wasnt more positive.
Hi Charlotte,
I'm so disappointed that low level laser therapy didn't help you and I can only appologise for getting your hopes up.
I do hope you find the relief you deserve
john