Chronic pain is handled by neurologists - so why the radio silence from neurologists?

Hi ATS,

This is a topic that is near to my heart. A little background is in order. I'm a UK citizen, married to a wonderful Latina wife, with two fantastic sons, both under the age of fourteen. My wife has been my carer for the past eleven years, but things got really difficult around four years ago. I have chronic pain syndrome, a severe case since four years ago, when my condition degenerated sharply, suddenly, leading to nine weeks of hospitalisation. I had to relearn how to walk after being bedbound for that length of time. It took three years for me to achieve a reasonable capacity for walking short distances using a crutch or walking stick. I still cannot walk more than around a fifty-hundred metres in one go, and if I walk that distance, my pain flares up considerably, leaving me in a rather horrible condition for several hours/ even days thereafter. Chronic pain, in my case, is treated with a combination of opioid & anti-epileptic medications, plus a tricyclic antidepressant - all of which have been proven to have beneficial effects useful for pain management, even as part of a long-term regimen. I also benefit from use of a TENS machine, and use relaxation/ self-hypnosis to assist also. For the sake of clarity, here's what the doctors have conceded, grudgingly, I am permitted to take every day, for the rest of my life:

200mg Tramadol
240mg Codeine
160mg Morphine
1200mg Gabapentin
150mg Amitryptiline
4000mg Paracetamol

As a brief outlay of my symptoms, I experience regular (and most severe) hyperalgesia, which thoroughly incapacitates me; permanent sciatica, permanent extensive localised neuropathic pain in my lower back, hips & legs. I have arthralgia, fybromyalgia affecting my legs only, and both myoclonic & ordinary neuropathic spasms which affect my whole body at random, but more or less continually depending on the types of movement I make. These endanger myself & my family, because I suddenly lose support from my legs, or lose control of my hands & fingers when I'm carrying a cup of hot tea, for example

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Here's the thing. That prescription's not perfect, though it's certainly better than nothing. I had to really, really fight to keep these medications at the levels you see. The doctors - almost everyone except my neurologist, and we're talking up to around twenty different senior professionals, with different specialisms, in different medical establishments - wanted to remove or reduce every single medication, despite evidence to prove that each medication, used carefully according to a very structured daily routine, acts in tandem with all the others, in a subtle dynamic of harmony with my rest & activity actions each day - creating a state of moderate control of the worst of my symptoms, if I'm careful & don't overdo things. The pain management consultant proved himself a liar by pretending that he never agreed to the levels of medication being used, when God knows that he absolutely did. I recorded several consultations because I didn't trust him from the outset - and I was proved right to have done so. A single General Practitioner at the local doctors' surgery stood up for me, and ensured I wasn't subjected to a politically motivated culling - which would have destroyed me, and my family, considering that we had spent three years rebuilding our lives (and specifically my capacity to engage with the world in a limited way) after the hospitalisation I referred to earlier.

Now the sad thing is, that in order to be of any use to my family, in any meaningful way, I often have to increase my doses above what is prescribed, in order to send a big "# YOU" to my misbehaving brain & nervous system. It's literally like bashing my central nervous system over the head with a frying pan, in such a way as to dull my neuropathic senses, in order to be of an apparently slightly more physically capable condition. Examples would include if I have to sit through a Nativity play, or attend a sports day. Even these 'assisted' activities are always of a short duration, despite the short-term boost of the extra pain control, which really saddens me - I haven't always been there in a properly meaningful way to support my childrens' development. I thankfully don't have to go to drug dealers on the street in order to receive this occasional assistance with increased medication requirements. I have a friend who helps me, who has access to these things, from people who don't really need them, and so he has no qqualms about giving them to me for free. I see it as a Godsend - without the temporary 'crutch' these things provide, I would be forced to miss key family events, almost all the time.

So anyway, that's enough about me. I include the above just so you get a feel for what sort of life I lead. To fully clarify (I apologise, I already said "enough about me") it's almost entirely on my bed, or occasionally laid on a sofa, because sitting in a chair worsens my symptoms exponentially, even after only a few minutes. For the record, I was diagnosed simply with 'Chronic Pain Syndrome, with incapacitating spasms', by a very competent & thoughtful neurologist - one of only two medical professionals that I trust, considering the unfortunate stigma & associated prejudices/ injustices which accompany serious chronic pain diagnoses, even within the wider medical professions. I cannot count the number of times I have been demeaned, endangered (literally) or subjected to some measure of public degradation in some way by senior medical professionals after they learnt what my diagnosis is.


Get to the #ing point already..!!!

So, the whole point of this thread, is to ask why, when I know that this condition affects millions to some degree or other, why are neurologists not talking about the management & treatment of, or perhaps investigative research into potentially overcoming, this serious disorder?

I was checking out the science section of a popular podcast hub (Player FM) & found myself at the neurology section. There are several noteworthy podcasts listed, and I decided to take a look, to see if any interesting developments had arisen in the field of chronic neuropathic pain management. I looked at the ones which report on & discuss articles & papers associated with the journal Nature; I looked at one podcast which dealt with careful peer review discussions of all manner of journal articles/ papers; I looked further at the more general, slightly more public-friendly podcasts, which, while still being thoroughly scientific, are geared more at communicating in a way that would be considered easy listening for a serious professional neurologist, but also in a way that would be fascinating, if a little heady, for interested laymen. I read through all of the historical podcasts, checking the subject material, obviously on the lookout for anything related to chronic pain management - I went back YEARS, and would you believe that I found not one podcast on the subject of chronic neuropathic pain management/treatment. What I DID find, were one or two podcasts (across the entire range of available channels) which dealt with how to proceed with treatment of opioid addiction. Which kind of spins off from the whole chronic pain thing, in an obvious sort of way. But there was NOTHING on the core subject.

Now it's important to note that only a neurologist can diagnose chronic neuropathic pain as a fixed, immutable SYNDROME which sticks as a permanent diagnosis for the patient. You don't "..get better" from Chronic Pain Syndrome. It never goes away - it's with you for life, to the grave.

So it begs the question - if neurologists are called upon to make such a weighty, immutable diagnosis - why are they not conversing on research, or even just general interest matters, relating to the diagnosis & management/ potential future treatments, of chronic pain syndrome..?

As I reached this point in the thread, I realised that my own neurologist had in some ways answered my question here today, when I asked him (back then, four years ago) whether I should make a further appointment with him, following a few follow-up appointments after my discharge from hospital.. He just said: "I'm sorry, there's nothing else I can do for you.." As always with him, he was exceptionally polite, and we'd had some fascinating discussions prior (he didn't patronise, and was willing to discuss scientifically detailed medical information with me). I was slightly taken aback, but I shook his hand, and thanked him for his support. He assured me his door would remain open, that he would be happy to discuss any problems arising due to my condition, and offered to act as a referee to attest to the medical reality & severity of my condition to whomever wanted to know.

What gets me is that NOBODY is discussing chronic pain. It's a fact that there have been no new specifically pain management medications created for the UK market since the 1980's, because everything that's available is quite profitable, thank you very much, so there's no need to put a dent in their own share price by developing medicines that make three other money spinners in their catalogue obsolete. But to know that the field of neurology - as represented in very reputably sourced & accredited radio presentations - over the past four years has not discussed even once the prospect of any research into more effective means by which to manage, or potentiallly even reach for a cure, for chronic pain sufferers, makes me wonder of whether there is a deeper, more insidious reason for this TOTAL RADIO SILENCE. I could begin to speculate, but I don't want to be shot down at the first dance, thus I will keep my thoughts on that aspect of the 'neuro-silence' question private, at least until we've got some discussion going (hopefully)..

If you do know of proper research, or wide field discussions into the issues I've raised here, please do share. But don't be cynical, and trash the thread because you managed to find something. What's truly being discussed here, is RADIO SILENCE. Why aren't neurologists having these discussions in the popular format of radio podcasts, stretching back at least four years? Is the nervous system so far beyond our comprehension that the brick wall it creates is totally impenetrable to our finest scientific minds?

ATS, I ask your compassion & your insight, to help me understand this puzzle - and perhaps, to point me toward a more hopeful dawn (preferably sometime soon, if possible).

Thank you for sharing so openly. I suspect there are a few other folks on ATS who can relate. I don't have any answers to your question, but I do know that treating chronic pain with opiates has become a very touchy subject here in Washington State USA. The largest pain treatment center was closed in August due to allegations that the owner/doctor was responsible for more than a dozen overdose deaths. Now there are at least 2,500 patients flooding other local doctors trying to get treatment that most providers refuse to touch. I was one of these patients and am on a 6-month minimum waiting list to be seen at another clinic. Fortunately, I have a compassionate and responsible primary-care provider helping me out in the meantime, but they were unable to write me prescriptions for the dose of medications that I have been on for nearly 10 years and they cut them by 50% which has wreaked havoc on my ability to function. Hang in there, I look forward to following this thread.

Patients Scramble for Help

When it comes to chronic pain they just don't know.

I world recommend Lyrica instead of gabapentin.

It cost more but it works better.

People don't understand the nightmare of never ending pain.

Sorry you feel so bad...

I have decided that the only place I am going to find sufficient relief is out on the street corner.

Pain is almost a dirty word amongst doctors since the fed started over stepping it's boundaries and locking them up. The DEA aren't doctors, and shouldn't be able to act as such. I'm sorry for what yourself and other CPP have to go through.

I concur with whyamihere, Lyrica is far superior to gabapentin in controlling nerve pain. without insurance it can run over $400 per month depending on dosage and frequency. Pain management in this country is a disaster. Problem is there are so many people gaming the system to get opiates to sell or use because they are addicts are ruining it for those with true problems, and really need the help.

you could probably lose the Tramadol and up the dosage of Codeine possibly. Seems to be a bit of therapeutic duplication there. most pain management specialist docs will have you on one extended release pain management drug, and one immediate release medication for when the pain "breaks through" a reply to: FlyInTheOintment

originally posted by: annoyedpharmacist
I concur with whyamihere, Lyrica is far superior to gabapentin in controlling nerve pain. without insurance it can run over $400 per month depending on dosage and frequency. Pain management in this country is a disaster. Problem is there are so many people gaming the system to get opiates to sell or use because they are addicts are ruining it for those with true problems, and really need the help.

This.

We migraineurs have the same problem at the ER if we end up there often for emergency treatment of an attack that our regular medications won't stop. If they recognize you, they can toss you out as a drug seeker. Problem is that we don't want to show up at the ER, but an attack that lasts for more than 72 hours is an emergency that needs treatment, and if we can't get to our regular management docs, then the ER is where we end up for immediate migraine interruption.

I used to frequent a migraine forum and in the time I was active there, at least two of the posters suffered strokes, one lethal, because the ERs in their wonderful socialized medicine countries refused them emergency treatment as drug seekers.

But with the current paranoia in the states, it's starting to happen here too because some of the drugs used to stop attacks are opiod.

a reply to: FlyInTheOintment

I am so very sorry that you are suffering in this way. I have a cousin in the States who has severe pain from two spinal injuries. He finds relief in a combination of Cymbalta, methadone, and acupuncture. He also takes the supplement Bromelain and some B vitamins. I do not know if it is worth looking into any of those, but I thought I would offer it in case there is something there.

200mg Tramadol
240mg Codeine
160mg Morphine
1200mg Gabapentin
150mg Amitryptiline
4000mg Paracetamol

i will bet that at least half if your medication list are not doing anything for you.

150mg Amitryptiline is one you will find is likely doing little.
and it works for chronic pain only in low doses around 30 mg if at all.
it only works on about 30% of people with chronic pain in blind tests.
in many cases its use by doctors to make people more placid to doctors orders.

240mg Codeine
160mg Morphine
Paradoxical hyperalgesia is a phenomenon associated with the long term use of opioids such as morphine, hydrocodone, oxycodone, and methadone.

I have fibromyalgia, neurosarcoidosis and small fiber polyneuropathy.

The best thing that worked for me was a few years using TENS units around my body at the places that hurt the most.

I used two TENDS units with 4 pad leads each.
And wire my self in the morning and let them run all day.
www.tenspros.com...
Over 3 years my pain levels have gone down by 90% and i no longer take gabapentin i was on 300mg x3

Fly, that's some cocktail of drugs. No wonder they wanted to stop some of them as you're taking two severe painkillers and two moderate painkillers. Now that's four different painkillers and I can't see, whatever mixture you're taking them, that they would give you a "combined"effect. I hope you're doctor has warned you about prolonged usage especially Tramadol as after 1 to 2 years some side effects can be greatly enhanced and can lead to you believing it is ongoing to your condition. Others like Codeine loses their effect after a period of time. Just one question, why are you not taking any anti- inflammatorys?
This comes from experience as I've had chronic pain for 20 years. Also tell your wife to keep looking for signs of depression as the constant pain wears you down and you will not notice yourself going down. I've had two severe bouts of deep depression and with my wife's greatest help and the medics worked through them.

a reply to: FlyInTheOintment
Why on earth does the doctor have you on 4 grams of paracetamol a day? Paracetamol (acetaminophen, Tylenol) is one of the deadliest drugs on the market and that dose is borderline dangerous.

Yeah, the MAX daily dose of acetaminophen is supposed to be UNDER 4000 Mg per day, but it's definitely not safe to take that much EVERY day for an extended period of time. Its not something your body builds a tolerance to like opiates and it will usually wreck your liver in short order.

Doesn't the codeine you take include that as well? Maybe you are including that in the 4000 Mg number, but if not, then you are getting more than you thought.

I've had a partial gastrectomy due to a pyloric ulcer that perforated through the intestine and attached itself to the pancreas. Had huge amounts of pain after surgery, but was given duragesic (fentanyl) 72 hour patches along with 4 Mg Dilaudid tablets 6X per day which cut the pain by more than half. You may need something like the patches or some other continuous / extended release (like oxycontin) for round the clock relief.

Tramadol & Codeine in my experience are very weak, even more so if used long term. Morphine is extremely overrated in my opinion as well - short acting & weak pain relief even in higher doses.

I have had pancreatitis plus other stomach pain recurring after surgery, and have had to go on and off these medications accordingly. In your case, maybe you could talk to your doctor and have him exchange the 3 short acting medications to 1 stronger long acting med plus 1 moderate strength med for breakthrough or as needed for relief (4 - 6 times per day).

I'm not sure if a nerve block injection would work for you, but it might be worth looking into if you have not already. I'm going in for a celiac plexus nerve block next week and hope it will work so I can back off on the medication once again.

You probably know this, but opiates are tricky when used long term due to the tolerance that develops. Unless the dose is increased every now and then, your body just adjusts itself to baseline, and when you reach that point, your body just uses the medication to maintain that baseline - feeding its own constant level of dependence and nothing more.

Good luck in your research, I'm sure its frustrating to hear that you have reached a dead end trying to find a cure or treatment.

I am very cynical about the medical establishment. I truly think the only reason there is not a more concerted effort to research a better treatment or cure to chronic pain is because there is a LOT of money to be made.

I don't have much to add to the discussion, but it is a good topic. I'm surprised the thread kind of died. I work in a pharmacy, and believe me, we can tell who is legit and who isn't. It bothers me that the people who misuse and sell their drugs make it harder for people who genuinely need them to get the relief they need. I can't even imagine what it's like to deal with constant pain. You have my sympathy, although I know that's not what you are looking for.

a reply to: FlyInTheOintment

imo not a very good list of meds.

im thinking lyrica instead of gabapentin as mentioned.
a fentanyl patch for the long acting needs and some roxicodone IR for the breakthrough.


your doc ever talk to you about a spinal chord stimulator?
you should look into it

I am so sorry to hear that you also have the chronic pain syndrome. I think TENS Unit would be the best choice for you. TENS device relieves pain by sending small electrical impulses through electrodes placed on the skin to underlying nerve fibers, stops the pain signal reaching your brain. My friend uses HealthmateForever TENS Unit pretty much everyday during the work-break to relieve his leg pain. Maybe you could try it as well.
healthmateforever.com...