Socialised healthcare in the British NHS - Can you share knowledge re: my Neurology query..?

I have a condition called Central Pain Syndrome, which is a very, very disruptive & painful condition, as the name suggests. It is NOT 'Chronic Pain Syndrome', which sounds similar but is less severe. At the end of this OP, I ask whether there is anyone who can share knowledge or suggestions regarding the situation I find myself in – please feel free to skip ahead if you don't need a full explanation of symptoms &/or my experiences within the UK's socialised medical system - the NHS - when trying to find a solution. (** See section below **)

To explain my experience of life, as context for the battle I have had in seeking a proper diagnosis & some sort of longer-term relief or even a partial/ full curative action, the following symptoms apply (& have applied to an increasingly severe extent over the past fifteen years):

I experience neuropathic pain (nerve pain; electric shock type pain basically, like when the dentist spikes your nerve during cleaning or investigative probing). The dental probe 'shock' is a good example of short duration, high intensity neuropathic pain which is referred to as 'hyperalgesia' when it strikes, and for me it occurs even with simple movements such as attempting to reposition in bed. I also have 'allodynia', where a stimulus which wouldn't ordinarily cause pain (such as pressure on the skin with a spoon) actually causes pain, sometimes severe, without anything that would incite such a strong reaction in a normal person. I experience arthralgia, which is pain deep in the joints, pain which is known as 'C-type' or 'slow wave' pain, a more dull & aching pain as compared to the sharp, stabbing, electrical pain of ordinary neuropathic pain (such as sciatica, which I experience in my legs - & with a concomitant type of pain that I experience in the arms) or hyperalgesia. Arthralgia is familiar to most in conditions like arthritis (but with me it's tangled up with neuropathic pain, making it worse). I experience fibromyalgia, which in its proper definition is pain in the muscles, and I experience this in spades - leaning over the sink to brush my teeth causes very oppressive, 'just ran 100m on an existing muscle strain' feeling..

Then we get to the neuropathies- I experience nociceptive & myoclonic spasm, which are similar but subtly different involuntary jerking movements of the body. In my case the myoclonic spasms affect every part of my body, including my jaw these days which can be a nuisance when talking face to face. Conversely the nociceptive spasms are limited to my legs. The myoclonic spasms are particularly disruptive when trying to sleep, or trying to carry items. The spasm results in a temporary loss of motor control, where the electrical signal from the brain's impulses are dissipated into the tissue surrounding the nerve fibres, due to its insulating sheath (the myelin sheath) have been 'demyelinised', which is an erosion of the sheath in my case caused by the use of certain medications, in particular the demon opiate 'tramadol', which many people are now familiar with as the drug which doctors were told was 'safe', which turned out to be particularly destructive and relentlessly addictive, much worse than morphine & codeine (or any of the 'natural' opiates - tramadol is a synthetic opiate..)

All these types of pain & neuropathy are experienced in Central Pain Syndrome, itself often caused by other conditions including stroke, diabetes or epilepsy. In my case I had undiagnosed seizures from the age of 15 to the age of 34, which weren't diagnosed medically because I had misinterpreted them as a form of night terrors. I would only experience them when in the hypnogogic state, when drifting out of sleep into a semi-conscious state of mind, which itself is often interpreted with night terrors or out of body phenomena. It was always the same - drift slightly awakened, then suddenly a violent 'electrical brain storm' as I later explained it. I would feel like I was in the electric chair - very violent buzzing, shaking, flashing types of symptoms, the qualia of electrocution, though without significant pain. I would be unable to see or hear properly when these events unfolded, and they would always last for what felt like thirty seconds or so.

Central Pain Syndrome cannot be cured using modern medical science & so it is more often 'managed' using combinations of medications including pregabalin, tramadol, codeine, oral morphine solution, amitryptiline & hypnotic sleep aid medications where necessary. My doses have crept up over the years, and now I'm in a transition zone where I'm going to have to be switched onto stronger analgeiscs, in particular it's likely that my tramadol will be reduced, codeine removed, and something like oxycodone replacing & exceeding the measure of what was being achieved with the use of those medications.

Preamble to the stated query:

In the section further down the page entitled ** Reference Section..... ** I discuss the differences between the two conditions which have competed as the true diagnosis for my condition. In particular there is one crucial element which caused me (in 2016) to suddenly stop & question the diagnosis I had been given by my original consultant neurologist four years prior. The severe pain symptoms described above as having affected my lower body – lumbar spine, sacroiliac, hips, legs – suddenly 'jumped' & began, without any sort of warning, without any sort of accident, to express themselves in my neck, shoulders, arms, wrists, hands & fingers. Exactly the same pain types & neuropathies. Even down to the strips of numbness on the edges of my wrists & hand/thumb & forefinger. This situation threw such a curveball, I just couldn't fathom it. My original injury had sparked Chronic Pain Syndrome (ChPS), I understood that. The same basic framework of a sensitised nervous system was at the root of that condition, which could be considered the baby brother of Central Pain Syndrome (CePS), which ultimately has been determined as the proper causative/expressed condition. With no preceding injury, I couldn't see how it could have happened that the condition just one day manifested in my upper body without any explanation for how that could be. At first, my neurologist stuck to his guns & said '# happens' basically. But I couldn't let it go, and eventually twigged that CePS was a far better explanation than ChPS – because CePS was linked to the seizures (which I explain below) & the numbness in specific parts of the limbs, for example. The sudden jump into an expression in the upper body without any precursor event also seemed more likely to be the purely neurological CePS (NOT the somewhat psychological ChPS). Anyway – please see what you think after having read further below – any advice, guidance or injections of knowledge would be most gratefully received. I'm hunting wabbits (solutions), and I must be vewy, vewy quiet, so as not to piss off my doctors (in a socialised system, if your doctor hates you, you're screwed). Hunting solutions among the exceptionally knowledgable community here on ATS seems to be a good place to go hunting..


Continued below...

** Reference Section on difference between two similar conditions , leading to dilemma**

The differential diagnosis comes down to the origin of the condition, and implies a ratio of neurological: psychological factors which also emphasises a differential between the two conditions. This is roughly as follows:

Chronic Pain Syndrome (ChPS) = Origin is primarily an orthopaedic injury which impacts a nerve in some way. Condition is perhaps 60:40 neurological to psychological ratio of symptoms affecting the patient's experience. The psychological component (anxiety, depression) actually forms part of a feedback loop which aggravates the pain experienced, and worsens the experience by catching & amplifying that pain. Weird, but true. If you can get the psychological aspects under control (using mindfulness, self-hypnosis, meditation, breathing exercises/ stretching/ relaxing exercises) then you can significantly lower the intensity of the pain experienced, and prevent the amplification of that pain being experienced.

Central Pain Syndrome (CePS) = Origin is a brain injury or chemical/biological damage (such as stroke, diabetes, cancer), or because of alterations to the functionality of the brain which can occur without damage to the tissues, or in any sense by which the experience can be easily detected in changes to the neurotransmitter balance, etc – this can be the case with epilepsy or other seizure-inducing conditions.

With regards to my own condition there was what I have termed a 'priming' of the brain & nervous system (known medically as a 'sensitising of the nervous system') leads to Central Pain Syndrome when a pain signalling feedback looping occurs – a 'stuck record' of pain processing which keeps skipping & repeating the generation of severe & multiple types of pain across a person's whole lifetime, without any macroscopic force acting on the system. To cause such a looping This 'stuck record' looping of the signal, occurring over the long-term (the permanence of CePS) is actually triggered by a one-time acute injury (which in itself causes primary neuropathic pain - entirely neurological in nature), The sensitising/ priming described results in what can be seen as analogous to a 'corrupted hard-drive', which leads to the corrupted processing looping of pain. This is actually rooted in a corruption of the descending thalamic loop in the brain (the name for the part of the brain active in pain processing). It is in fact the non-physical properties of that descending thalamic loop (the bioelectrical signals produced rather than any obvious damage to the fixed macroscopic structure or fluid chemical processes) which has been altered in the first instance by the repeated incidences of violent flooding of erratic bioelectrical pulses occurring during the seizures. The acute injury which actually trips the wire & triggers the faulty processing in the descending thalamic loop need only be a slight injury – in my case it was a prolapse of the L4/L5 disc in my lumbar spine, but it could equally have been a broken collarbone or a crush injury to the wrist, for example.

In my case, the original injury – the prolapsed disc - was due to mechanical stress on my spine caused by repetitive strain conditions in a factory job I was working at the time. It caused lumbar neuropathic pain, on the right hand side of the body, as well as sciatica in my right leg – this was named as chronic pain when it had lasted for longer than 6 months, having failed to respond well to pain medication & physiotherapy. Instead of healing it had become more & more severe & entrenched within that time-frame. After 6 months the pain began to spread into the sacroiliac, and the hips - before starting to express as sciatica in the left leg as well as the right, spreading down to the ankles on both legs, becoming symmetrical expressions along the same nerve pathways on each side of the lower body within 12 months. For several years the pain seemed to be roughly the same in its severity of expression, though neuropathy including spasms & numbness in the outer edges of the limbs began to appear after 12 months too.

In my own case this was the origin of the problem, though it went undiagnosed for 22 years! This is why my own case was considered to be ChPS at the outset, rather than being diagnosed as CePS. In CePS the only psychological symptoms are derivative from the neurological pain, in effect being 'add-ons' rather than anything that significantly impacts on the overall pain experience. This is a really crucial point to understand in the general management of the two conditions. Basically, people with CePS should not be forced to accept lower than efficacy levels of pain medication, which is often done with ChPS cases simply because the doctors are aware that a proper handling of the psychological factors can significantly reduce the overall negativity & pain which is experienced when ChPS is the correct diagnosis. In the case of CePS, however, there is no way for the CePS patient's experience to be significantly relieved to the same extent as the experience of the ChPS patient solely by the use of such methods as mindfulness, self-hypnosis & so on. Yes, it is wise & beneficial to relieve their anxiety & depression in whatever way possible – and in fact, pharmacological solutions for those conditions may be beneficial whereas they wouldn't be appropriate in the ChPS patient, because in essence you are adding pharma solutions where non-pharma solutions may be better-suited to enhance their overall experience. This is a subtle & complex point, so it's incredibly important for prescribing doctors to be aware of these subtle factors of ratio, feedback loops, derivative outcomes vs. generative factors, and so on.

General Summary in context of the socialised medical healthcare of the NHS:

What have I learned? I've learned that many medical professionals in the ordinary course of their duties simply do not know, and do not understand properly when it is explained, the subtleties & tricky interdependence of the feedback loops, brain structures, contributing factors, sensitising, trigger incidents & so on. This is not their fault, and I don't blame them unilaterally, as it is a specialist area of medical knowledge. The trouble is, many anaesthesiologists do not understand & cannot be easily taught the issues which are involved, to the extent of which the various factors can be balanced, tuned & affecting the patient experience. Even worse, some neurologists are unwilling to see the clear fact of the applicability (or otherwise) & the impact/s (or otherwise) of the intangible factors which play into these conditions. In a socialised medical healthcare system like the UK's NHS, front line care is excellent, but even the specialist doctors & consultants are sometimes completely unwilling to investigate rare or complex cases to the extent to which it is necessary to do so in order to relieve or cure the patient's maladies, or the way that other factors can influence or be influenced by those symptoms/ by that overall condition.

Continued below...

The Main Query:

With all that in mind, and I appreciate that it's a lot of information to throw out there – does anyone have any knowledge or suggestions regarding how I myself, in a nation where this socialised medicine has made it very difficult to secure the correct diagnosis or support, can indeed find a way to reach an improved level of knowledge, diagnostic support or symptom relief? If you have any special knowledge on this condition, or on Neuroscience/ Neurology/ Anaesthesiology which might help me overcome the British NHS stance that 'modern medicine cannot offer you any significant cure or improvement to your experience of life', then I would hugely appreciate it.

Thanks ATS,


FITO
Cheshire, England, United Kingdom

originally posted by: FlyInTheOintment
... which might help me overcome the British NHS stance that 'modern medicine cannot offer you any significant cure or improvement to your experience of life', ...

American medicine might have given you the same answer with a larger fee attached to it.
You have introduced the political issue of "socialised medicine", but it may be a red herring.

originally posted by: FlyInTheOintment
With all that in mind, and I appreciate that it's a lot of information to throw out there – does anyone have any knowledge or suggestions regarding how I myself, in a nation where this socialised medicine has made it very difficult to secure the correct diagnosis or support,

1. There's a healthy private healthcare sector. Go there. It's staffed by moonlighting medical consultants!!
2. You can get a second opinion, or a third. Just ask your GP to resolve that. At the end of the day, if you won't accept what's on offer then you either accept, or go to point 1.
3. In the NHS there is excellent knowledge and skills. The NHS has highly trained and experienced clinicians. I don't agree with your assessment.
4. Summarise your post.

My head hurts. I doubt anyone here can assimilate the long list of maladies you have enumerated, much less understand them. I suspect you have the most in-depth knowledge of all this of anyone in the world, including the medical community. I'm guessing you are an extreme outlier and you may have to come to the conclusion that no one can wave a wand and fix you. Certainly no one on ATS, which is not a particularly good place to come for medical issues. But it strikes me that one thing they have done is simply mask your symptoms rather than treat the underlying cause. I say "cause" because I can't believe there are many. This almost has to be caused by one thing, not many things.

Pursuing that thought, have you ever tried any holistic approaches? I'm not talking snake oil stuff, but those with a verifiable history such as acupuncture. Seems to me western medicine has failed you, so you have nothing to lose to branch out a bit.

Apologies if I have missed this (it is quite a long OP) but is there an alternative medically recognised treatment not available on NHS.

If not, like Disraeli,I struggle to see the relevance to socialised medicine.

A private consultant appointment with a neurologist or neurosurgeon isn't that expensive ( although further treatment might be).

a reply to: FlyInTheOintment

You need to get a second opinion. And pick the brains of anyone you see because you never know who knows who. I have had a few situations where one doctor I went to see knew so & so and put in a special word for me and I was able to, through the system of course, eventually see that person. Always research the doctor(s) you are going to see so you can see their reviews and what their speciality is AND their special interests. Unfortunately, you have to do most of the work for the help you need and it often boils down to the kind of discussions you can have with the doctors. The more you know, the more they open up and share with you and then take more of an interest in you.

It sounds to me like you are on top of everything the best you can be. But, often doctors aren't interested in you as an individual and just treat you like a number and put you through basic tests if they even bother to go that far.

I hope Rickymouse www.abovetopsecret.com... chimes in, I have a feeling he may have some good feedback for you. He has two grandchildren with cerebral palsy (think I am remembering correctly).

You could pay for your own MRI.

Have you heard of Exploding Head Syndrome? I am going to put this here, because I have found self help by following the rabbit trail from basic sources that lead to how they are intertwined with deeper medical issues: www.tuck.com...

Good luck!

As a longtime sufferer of painful neuropathy, I have also been on many bad medications. The only help has been indica cannabis. Hope it is okay to mention that as it is legal where I live. This has been my miracle. Somehow, I think you may have already tried this-otherwise, try a good Chinese herbalist. So sorry you are living thru this hell.

Being trapped in a system that does not allow you freedom of movement very easily is troublesome. I've heard migraine sufferers have similar issues with it. Basically, you need your current care professional to become convinced they cannot handle your case and pass you on to someone who might know.

The trick is getting that to happen as you do not necessarily have the freedom to make the move yourself.

Some good organic bone broth, a small taurine supplement, 500 mg or so, and some methyl B12 and B6. That should help to rebuild the myaline sheath of the nerves a bit. Not a miracle, but maybe some dampening and less progression of the disease. You could also possibly benefit by some methylfolate, just get some B-Right supplements for all the Bs. Choline also helps, eat some eggs more often. Hydroxycobalamin or adenocobalamin may also help. If the problem is coming from high sulfite levels, then a molybdenum and copper supplement may help, all you need is the daily requirement of both of those minerals. High sulfite can cause nerve deterioration and pain. Molybdenum is a cofactor in sulfite reducing enzymes.

Before I see the replies, I've just read through my OP again & realised that I made a mistake in my editing before posting. The following quoted section is wrong, and may have thrown the whole narrative completely off-cue..

For several years the pain seemed to be roughly the same in its severity of expression, though neuropathy including spasms & numbness in the outer edges of the limbs began to appear after 12 months too.

In my own case this was the origin of the problem, though it went undiagnosed for 22 years

Where I've said "In my own case this was the origin of the problem" I actually meant to be describing that the seizures were the origin of the problem, which themselves went undiagnosed for 22 years. If you bear that in mind, the jilted sentence progression can be brought back on track.

Apologies for the error..

a reply to: rickymouse

Astounding information, thank you. I will look into this & see what comes of it. Seems I have some experimentaing to do but I'm game for it at this stage! I appreciate the no-nonsense approach to your response, great stuff.

a reply to: hiddeninsite

Thank you, this is great advice & definitely plenty to think about. I had a poor experience when I was referred by my neurologist to some professor who was expert in a particular type of surgery. I was frustrated because my own neurologist should have been able to answer the query I had put to him regarding that type of surgery, but instead he referred me to a very arrogant & quite deeply unpleasant man who clearly thought a lot of himself & enjoyed trying to rip me to shreds as a timewaster in his written response to my neurologist & GP. What made it the more galling was that during the appointment he had maintained a facade of being polite & respectful, then as soon as I was out of the door (having thanked him for his explanation & advice - I hadn;t argued with him, and in fact I drew the appointment to a close after hearing his explanation of the unsuitability of the surgery in question - spinal stimulation - by saying that I didn't want to take up any more of his time, as he had explained clearly & succinctly why it wouldn't work in my case). It felt a very devious thing for him to have done, and really put me off asking for cross-referrals. I have a great GP, so I wrote to him & to my neurologist stating how upset I was at this guy's behaviour towards me. I made it plain that what he wrote in the letter was untrue & underhanded based on the actual appointment, and we three left it at that. They agreed with me, so nothing further was said about the sorry affair.

Having said that, I do suppose that a second opinion might be helpful, and if anything the above experience did teach me to do a bit more research about the people I would be potentially meeting with. Thanks for the detailed response.

a reply to: paraphi

3. In the NHS there is excellent knowledge and skills. The NHS has highly trained and experienced clinicians. I don't agree with your assessment.

Clearly there's a couple of things unstated here which should be highlighted.

Firstly, I doubt that you're poor, disabled, on benefits & with circumstances that make it hard to get up from the bed, or the orthopaedic chair, for any more than a few minutes at a time.

Secondly, you've clearly never been a sufferer of anything beyond a straightforward medical infirmity. As another poster noted, my case is an outlier, and many, many arrogant tosspot doctors in the NHS like to think they're above dealing with poor, benefit claimant & disabled young men, who don't fit the character profile of a submissive goat for slaughter. If you answer these doctors with an ounce of fight or intellect, their hackles go up & they go out of their way to oppress you, just for being that irritating little prick who skewed your metrics that month on the trauma assessment unit.

Thirdly - have you ever actually met more than two or three high power consultants? They're not the sort of people who want their metrics skewed. Play a round of golf with the councillor, sure - but then provide a careless diagnosis & treat a frantic middle aged mother like # when she's close to breaking point because of her child - who nearly died of an asthma attack - so she bursts into tears at discharge, and all because her first language isn't English & you had to explain yourself more than once? Definitely not all 'good people', even if they are 'highly trained & skilled' (which not all of them are... skilled, that is). It's like any profession - there's 20% great people doing 80% of the workload, and 80% doing 20% of the workload & causing 100% of the cock-ups..

First, I wanted to say that you may very well have run into the same issues in the medical industry here in the US. I most certainly have..

Basically what happens here is if you complain of pain and dont have cancer, be prepared for a serious uphill battle. And, not just in terms of pain management, but treatment in general. I almost lost my life due to that attitude. Ive even had doctors withold and lie about test results because it conflicted with their preconceived notions.

Even in the past month, I have been told "we all get aches and pains as we get older, you just need to deal with it." Interestingly, a quip that has been said repeatedly over the past decade. And, one that is laughably not applicable in my case. Pretty sure they have a script to follow for every non-cancer patient, regardless of medical issues. Apparently, having a third of my spine broken and remaining in the acute fracture stage for over a decade is "normal aches and pains."

Its a wrecking ball of an industry.

All that aside, nerve pain is a tricky one. Opioid type meds never did anything for me, for serious nerve pain at least. They have tangential benefits but dont tend to really do much for most folks suffering with neuropathy.

I tried some of what ricky mentioned, to "ok" effect. Its just straight up good advice though, diet can make a surprising difference. Like he said, its not a cure.. But as Im sure you know, even small percentage improvements can be dramatic in ways that most people can never understand.

Really the thing that did the most was gabapentin. It took a couple months to start doing anything, however, the results have proven to be permanent. I was told I would have to be on it the rest of my life to maintain those results, but that ended up false like so many things.

originally posted by: FlyInTheOintment
Thirdly - have you ever actually met more than two or three high power consultants? They're not the sort of people who want their metrics skewed. Play a round of golf with the councillor, sure - but then provide a careless diagnosis & treat a frantic middle aged mother like # when she's..

I work with high-powered medical consultants . Your attempt to stereotype medical professionals is perhaps a sign of your frustration. The vast majority of NHS doctors - of all grades - and other senior healthcare clinicians are highly motivated and put the patient at the centre of what they do. Most don't play golf.

If you think you have been wrongly diagnosed, then ask your GP to send you somewhere else. Otherwise, make a complaint to the Trust where you are being treated. Healthcare today is not straightforward and doctors are presented with fantastically complicated conditions, some of which they cannot resolve. Misdiagnosis is not that rare, in fact it's quite common and can be a way of settling on the root issue.

Anyway, try not to assume you know anything about me. You asked for help. Here's Citizen's Advice And, here's the GMC

a reply to: FlyInTheOintment

I am not trying to belittle your condition by any stretch of the imagination. But I wonder if the cause of some of your pain is similar in nature to a nervous breakdown. I struggled with nervous breakdown in my early 20's. Realised afterwards that even though the root cause of the nervous breakdown had diminished, the symptoms continued by manifesting in themselves from fear. Fear that caused the mind/body to become highly sensitised to all stimuli (I couldn't sleep in bed because it shook from my heartbeat).

When the doctors prescribed me serapax (oxazepam) the symptoms went away. When I realised that serapax was only working on brain chemicals. That nothing was really wrong with me, I didn't need drugs anymore. The symptoms returned occasionally but I paid them no mind.

Yoga guru's can send any part of their body into a state similar to hibernation. They can have operations performed without drugs etc. That is something I would pursue.

I feel for you.

a reply to: FlyInTheOintment

Sent you a PM

a reply to: paraphi

Okay, I will take a step back. It seems I've got myself in a real tangle of knots because of perceived unfair treatment & lack of a straightforward diagnosis/ treatment plan. Based on some of the posts here it seems I'm actually in a fortunate position to have a GP I trust with my life, and a neurologist who has always personally supported me, even if he didn't exactly nail down the precise subtlety of the diagnosis straight away. I also recognise that I seem to have had a run of bad luck with a stack of nasty doctors (GPs) at the outset of my condition & its attempted management (between 2005-2013 I had a string of abusive family doctors who accused me of all sorts of things rather than actually seeking the right support/ working with the appropriate people to sort out the diagnosis & medication regimen which was needed to keep me in a somewhat more comfortable state..) This is, with hindsight, the reason why I have had such a determinedly pissed off attitude towards doctors in general, and this discussion has clarified that in my own estimation, hence it has been of value to discuss the matters involved.

I maintain that there have been a number of consultants in my own experience who have been patronising, uncaring & deliberately oppressive towards me, but I suppose that is down to a run of bad luck also, some of which was linked to the very difficult experience with uninformed & downright unpleasant GPs at the outset. Talking to a number of local people regarding the GP surgeries involved, I am most certainly not the only one who regards those specific surgeries as being staffed with deeply unpleasant people - one in particular doesn't have a single pleasant member of staff except for the locums who rotate in & out constantly..

As noted, the limited discussion in this thread over even a brief period of time has been helpful in a number of ways. I can see well-meaning people who are misinterpreting the situation as a breakdown (a derivative effect of my condition has been very high anxiety, though it's ebbed & flowed since the inception of the condition in 2005). I can also see that there has been a clarification as described - my experience is more or less down to a run of bad luck. Thirdly, I confess there are a great number of consultants within the NHS who are decent people - I never meant to insinuate that there weren't - bear in mind my complaint has been against the high rollers, the ones with the arrogance who would prefer to be working full time privately so they don't have to deal with the plebs. I freely now admit that my experience has skewed my own ability to see the glory of the woods for the sake of a handful of ugly trees directly in my line of sight..

Thank you to everyone who has participated!