It was at that point that the surgeon referred me to one of our hospital's chronic pain clinics in the hopes that they would be able to offer me relief. He had one specific doctor in mind for me to work with, someone who he knew who had had a successful track record in clearing up mysterious abdominal pain problems in the past.
My surgeon must have pulled some strings because he was able to push me to the front of the line and I didn't have to go through the usual 16-month wait to get in to see the doctor. The only doctors who even deal with the issue of chronic pain are anaesthetists and they are in such demand elsewhere in hospitals that their clinics are few and far between. The doctor I see can only see patients once every two weeks and even those clinics are subject to cancellation if he is needed for emergency surgery.
The doctor I'm seeing now was able to diagnose my problem as soon as he heard my symptoms and by asking me if I had ever been diagnosed with any prostrate problems. When I told him that I was once diagnosed with an infected prostate, that was all he needed to hear.
But diagnosing and treating, as far too many people I'm sure can attest to, are two entirely different matters. In my case, in particular, it was a real problem. It is very difficult to access the pelvic wall of a man; anatomy has provided a very specific obstacle that doctors have to work around.
Myofacial pain is caused by bunching of the myofacial sheath around specific muscles that cuts off the flow of blood to the affected area causing it to go into spasm and all the muscles in the vicinity to react in kind. The longer the condition lasts, the worse it gets, and the more parts of the body that are affected.
In order to treat this the doctor needs to be able to inject the focal point of the pain with a mixture of steroids and anaesthetic which will smooth out the bunched myofacial allowing the blood flow to resume and the muscle to return to normality. So, when dealing with a man's pelvic floor, anatomy becomes a problem.
We've tried ultrasound to help guide the needles, we've experimented with different angles of approach (it's a good thing I'm flexible) and after three years of chipping away, we're still not much further ahead than we were when we started. I'll perhaps get some temporary relief from some of the peripherally damaged muscle pain, but we don't seem to be able to hit the bulls-eye.
Article comments
1 - jerry hesch mhs pt
I am pleased to read such an honest and true explaonation of the lived experience that is chronic pain. I could scream when I read that the wack-job who wrote about her chronic eye/pain/headache (now describbed as a migraine was inivited to speak at several chronic pain groups. My God does anybody read the damn book before they invite her? She does NOT represent me, but Richard does.
My journey is 32 years old.
Has Richard been screened for inguinal neuropathies? I know how to palpate those nerves but have never found a medical doctor who did or who was willing to learn from me. I can palpate intra-inguinally the genital portion of genitofemoral nerve, the spermatic cord which is innervated by the ilioinguinal, the iliohypogastric and over the pubic bone: the accessory obturator nerve (if present). Treatment, as he has outlined is a whole other matter and to date, not satisfactory.
Please let me know if I can be of help.
best regards
jerry hesch, mhs pt
PS my web site addresses another problem, not abdominal neuropathies.
2 - Howard Dratch
Another courageous piece of writing, and stalwart attitude in coping with both the pain and the medical profession (who can sometimes try men's souls).
After my heart attack I once had my (then) "primary care physician" tell me not to take too much nitroglycerine as I might become addicted! This is, of course, nonsense as no one gets addicted to nitro. It opens arteries to prevent heart attack and ameliorate angina (crushing chest pain). It is not a drug that offers any fun; merely a cessation of pain. My present doctors in the US and Mexico say pop it, spray it, just keep the arteries open and the blood flowing.
So how does a physician fall into this quagmire of fear of addiction to this, that and even the next thing? Nitro as well as morphine, the dread Valium (that keeps me from tensions that make more chest pain). The only explanation is hysteria and a weakness to believe propaganda. These are not good qualities for physicians. Perhaps the power that has been handed over to government agents (the D.E.A.) to lord it over highly trained professionals is another ill-effect of national hysteria. Cops have little place in medical practice.
In all our prescription drug guides there are warnings about some medications (like morphine, demerol, etc.) which constantly warn that the med might give "an enhanced sense of well-being"! What Puritan ever invented that line? Who would object to "an ehhanced sense of well-being"? I thought that was a universal goal.
Hard though these articles may be for you to do, this is another successful one.
3 - Joanie
Richard, since injuring my back over a year ago, and surgery 10 months ago, I know what you're going through. The pain has not abated. The "insignificant" findings on MRIs and xrays - all showing "minor" abnormalities in the areas I've reported continuing pain - have yielding varying opinions from my doctors. One minute they're saying surgery is an option, the next minute, it's off to the pain clinic for me.
I'm willing to do whatever it takes to resolve the pain, but I refuse to live with it. And I refuse to remain medicated all the time.
I know the frustrating days spent supine, barely able to get up to go to the bathroom, the days of not having the energy or the fortitude to shower, or the countless days wondering if I've absolutely lost my mind. And then I get the good days. They never last long enough, but I'm grateful when I have them.
I will point out one fallacy about medications, though. Even if a medication is prescribed for pain, it is possible to become addicted. There's also the issue of tolerance and the need for higher doses. But, it sounds to me like you've established a system much like mine: you simply wait until you can no longer bear the pain before resorting to your meds. That's a key strategy to avoiding addiction.
As a nurse, I know the ins and outs of pain management. As a patient, I've been through this before (just for a different area). I know when to call the doctors on their reluctance to treat, and I know when to push for tests, treatments, and whatever else. However, when you're in the throes of agonizing pain, you sometimes don't possess the wherewithal to fight the system.
I'm glad you've persisted. And, you know where to find me if you need help with unraveling some of the medicalese.
I wish you nothing but good health and resolution to your pain.
4 - Gavin Nardi
Richard, thank you for your honesty in writing about pain/chronic pain. Two and a half yrs ago I injured myself at work and have not had a day without pain since. That day I lost my ability to work, to drive, to study, to manage paying the rent, I later lost my wife (she left), and a heap of other stuff that I used to enjoy. My work joined the insurance companies in saying that I had a back problem all along and they bore no financial resbonsability. I think Im up to 10 epidurals now and heaps of painkillers and that is how I survive. Pain is something that is 'in your head' as far as most Dr.'s Ive seen fortunately Ive had a great personal doctor who has helped as much as she could also I have attended a pain management clinic which has helped heaps. I think your writing on trying to cope while not keeping up personal hygine was so true, it is at times too much, and yet there is so much more to life that I would like to enjoy. I do sincerly hope you find the strength to write futher as this has column been a great help to me and Im sure other's.
5 - Richard Marcus
Gavin, I'm glad that this has been of some help to you, that makes it feel worth making the effort to write it. Writing this, and other bits and pieces I write about chronic pain, are part of my coping mechanism sometimes, in that it helps me blow off steam and frustration.
I'm not being very altruistic when I right things like this, so I'm glad there's a residual benefit for other people. I don't feel particularly courageous, just fed up and cranky.
Joanie I'm afraid I sill have to disagree with you about the addictiveness of pain medication. As long as it's takem properly I don't believe it will be become addictive. Unfortunately you're very right that the body builds up a tolerance to the drug's effectiveness, but sometimes that tolerance is only to the contradictions of drowsyness.
Because I take both the long term slow acting morphine and quick fix type for the spikes, I'm able to maintain a threshold which up to recently has been tolerable. I don't wait until the pain is completly out of control before taking meds, becuase that makes it hard to bring it back under control.
Maintaining a consistant level of control over the pain is what my former family doctor and I were aiming for, because that's what prevents addiction, or more accurately a dependancy, having to take the stuff on a regular basis and therefore begining to "need" it on a schedule.
During one of the times I had stopped taking my long term meds, which lasted about two months before it was decided to put me back on, I was making perodic trips to emergency to get the pain levels brought back under control via the use of intravenous injection of morphine on a regular basis for twelve hours or so.
I had one emergency room doctor suggest that I just do what they had been doing at home. Take a dose, wait an hour and see what happens, than take another if needed and so on. He said if you are in that much pain that's what you have to do, and the worse thing that's going to happen is that you might pass out and get some much needed sleep.
Certainly there are going to be people who abuse drugs and will become addicted, but that's because they are not using it for pain management anymore (When I was in hospital after my surgery, I had an epideral to control the pain, and there was an automatic pump that pushed liquid morphine into my system via wires and tubes. Anyway one of my nurses was telling me how they caught one of their patiants out on the street selling the morphine.) I figure if anyone is going to have a problem with addiction it would be someone like me who is a former substance abuser. I'm still addictied to cigarets and coffee, and even after twelve years I wouldn't trust myself with booze or any of the other "problems" that I had. But I've never experienced any cravings for the Morphine I take.
Maybe its because it doesn't do much to alliveiate my pain, that I can't see why anyone would take it for "fun" in the first place.
Jerry, actually my doctor has had remarkable success with other male patients, aside from me. Three years ago when I joined him, it gave him his third male patient that he was able to make this diagnoisis on, which gave him enough to convince the provincial insureres that a techniques he wanted to try should be covered. I'm the only one of the three still kicking around his offic, and he has had many patients come to him in the interim and have the issue resolved. I'm just lucky I suppose.
The contracted muscles have to be released, it they're not there is no point in this type of treatment, everything else is juat a bandaid. If I'm not suffering from nerve damage I don't see the point in being treated for it.
cheers
Richard
6 - Maggie
Thank you, Richard. A very brave and thought provoking article. I am also a chronic pain sufferer and I also disagree with Joanie that pain meds should only be taken "when you can't stand it anymore." This not only INCREASES the pain, but also may increase something akin to (but not exactly) addiction. When pain meds are taken in regular scheduled doses, one does not experience euphoria, "sense of well being" or anything else, other than Pain Control. One is not a zombie, nor does it effect consciousness, if the dose if correct and it is the right opiate for the patient.
If one is to wait until the pain is awful, euphoria may well result, (as you have waited too long and the body is so released and happy to finally have some relief.) The best pain control strategy is long acting opiates, with short acting opiates for "breakthrough pain" and maybe either an anticonvulsant or antidepressant to help with pain control. This is the regimine I am on, and my chronic intractable migraine is MUCH better than when I was only given sporadic doses of pain meds which worked,(Along with dozens of other meds, like triptans and muscles relaxants, which did nothing, or cause horrible side effects) and did not build enough of a tolerance to elimiate the "euphoria." (Which was a natural reaction to finally be out of pain after weeks or months of suffering, and had more to do with lack of pain than the side effects of the drugs.)
I, too, beleive that "addiction" is NOT the same as tolerance, and that the fear of "addiction" (or even the fear of "euphoria") prevents too many HCPs from doing a good job, and causes terrible suffering in the people in pain who put their trust in them.
My neurologist beleives that pain is similar to epilepsy, and that pain "kindles" more pain, forges strong neuron connections to create more pain and forces the brain and neurons into a Chronic Pain Syndrome. He believes that if my pain had been taken seriously for the first 20 years and was treated the right way the first 20 years, I might not have the level of pain I have or maybe not even be "chronic." As near as COMPLETE pain control as much as possible is not only better for the body and the neurolgical system, it is never going to cause "addiction." Addiction is a behavioral disorder, where a person seeks and uses a substance DESPITE poor results and even when it causes problems which were not there before. Treating REAL pain with real meds NEVER does this.
One should take one's pain meds at the FIRST sign of pain, not when one "cannot stand it anymore." AVOIDING the pain is better than trying to catch up on untreated pain.
Catching up is more likely to result in "addictive like" behaviors (also known as "pseudo addiction.") than treating the pain at the firat sign. A good doctor knows the difference between "pseudo addiction" caused by NOT ENOUGH pain meds, and real addiction, caused by recreation use of pain meds, by people who are not IN pain. (Like you, Richard, I cannot understand why anyone would abuse pain meds. It makes no sense to me.) The cure for "Pseudo Addiction" if a doctor is seeing this in a real pain patient, is to prescribe ENOUGH of the right pain medication. No one who is under good pain control will become enamored with or obssessed with their medication, but a patient who is undermedicated may. Prescriber properly, and the "pseudo addiction" goes away, as the pain becomes tolerable.
We blame "Opiaphobic" medical "professionals" who think opiates are "addictive" and who do not have the bravery to prescribe them in sufficient quantities to control REAL pain.
Thank you again, for your bravery, Richard.
My prayers for pain free days ahead for you. (And for me.)
Maggie
7 - Scott Butki
Wow. I had no idea. Thanks for sharing all of this.I'll read this and get back to you.
8 - Scot Butki
i'm speechless. What a terrible situation you are in.
I feel guilty now for those times when I gave you a hard time for not responding more quickly to a comment or email.
9 - Richard Marcus
Scott: Don't even think about that, why should you not have treated me the same as anyone else, or continue to treat me like everyone else for that matter. I do the best I can just like the rest of the world does in whatever their situation is, and as long as we all remember that about each other all the time, there is nothing to feel guilty about ever.
Hell sometimes I won't answer email or read comments because I'm being lazy, and sometimes because I can't, you're not to know which one it is are you?
This isn't directed at you Scott, but you just made me think about something. Disabled people don't ususally want "special" treatment, but maybe what the rest of us should think about is why are we willing to cut some people some slack but not others. Perhaps we should treat all people like we treat the disabled and give them the benefit of the doubt.
But thanks for the sentiments Scott, and never feel guilty for something you didn't know about.
10 - Gordon Hauptfleisch
Very on-target: "Pain is exhausting physically, intellectually, and emotionally." I depend on a few different medications to control random but excruciating head pains (with improved MRI tachnology, what was once Trigeminal Neuralgia is now "Polycranial Neuropathy," which makes it seem like I have five heads--I only have four).
As you mentioned, it is hard to describe and convey to people that chalk it off as My little headaches (I understand: it is mystifying how I can be okay on minute and the next be hit with electric-shock jolts and/or sustained pulsating pain that can last two minutes or two weeks).
Now I am faced with a dilemma: I'm going to be having an spinal surgery operation for a different extreme pain problem, spinal stenosis. Which is great for the long run, of course, but one of the problems is that in preparation I will have to do without my head medications and even with ibuprofin (which I take also for arthritis). So far, I haven't been able to suitably impress upon my non-Neurologist doctors (Primary doctor and orthopedist--how much this is going to be a potential hardship.
I guess I can hope that I'll go into a remission, which happens now and then. If I'm lucky.
Thanks for writing about this, Richard. Keep up the courage.
11 - Scott Butki
Richard, thanks. That makes me feel better.
I do a lot of work with special ed students and I rerealized I just made a hypocrite of myself.
(Not that you're special ed but that you have a physical problem.)
Anyway I see too many people talk down to those with special needs or expect less of them and guess what? They get less from them or don't have aca connection.
I reject that premise and expect the same of them as others but just add more time and patience as factors and guess what? I get more out of them and have even had times when children who I've been told never spoke or ate while at the school did so for the first time.
SO my intention wasn't to suggest I expect less of you but rather concern that I was somehow adding to your problems. But the reality is if it wawas a problem you would have said so.
Thanks for the thoughtful response and not taking offense.
Now I need to see how we're going to sort out how true Alice's Restaurant is...
12 - Richard Minjares
Hi Richard I could not beleave when I read your article, I have been suffering for years with a prostrate condition and its so funny, because when Im not on my morphine the pian is so horrible I just would have to end my life but the fact that my rite side when I press on my rite foot my rite insides in the pelvic region feeel;s like it will rip my insides out and you name the pain all the sharp burning radiating then I could go on and on I have been considering suiside because the pain pills are causing a severe depression my only hope is to have a pain implant put in cause i cant live to much longer with it all combined and yes one of my worst night mears is if they the docters stoppped beleaving my and stopped the pian meds my pain is bad enough but then with withdraw I would have to take my life and even thought some of the test they have ran shows prostrte trouble some even urogoloist cant see how I could be in that much pain that i need pain pills the other side is lets say 50 miligrams time rel;eaed every tweleve hours takes the pain away shorthy after I take it I will get verey depressed then I cant get of the sofa unless I take a slightly highe does just for engery then its just a horrible life and Im scared to death that im tried of thr fight Im trying to get them to do the implant cause just cant take it please respond ccuase sounds to me we may have the same prostrate condition thanks Richard Minjares..
13 - Richard Marcus
Richard.
You're right, it does sound like we have a simillar condition, although yours sounds like it is more out of control than mine. First of all I take far more morphine than you and have none of the side effects that you are worrying about: depression etc. In fact because of the morphine I can have a semblance of a life.
I take 100mg of long lasting morphine evey 8 hours, in other words 300 a day. That way I never experience a "high" or a "low" from the meds, because I have a continual barrier against some of the pain. Of course I still have spike periods, where I have to take a quick acting dose for immideate relief, and those are the only times I feel any sort of effects, like drowsyness etc.
Which is okay for those periods, because you have to be able to escape the pain when it gets too bad and there is nothing wrong with wanting that. I usually find if I do fall asleep after taking a short term pill, that when I wake up the muscles have been able to relax during sleep sufficently to help the pain subside.
I would ask your doctors to try and get you into to seeing a pain specialist if you are able to. I don't know what kind of treatment you would be offered, it really does depend on where you live and the doctor you see. But at the least you may get an accurate diagnosis, and proper pain management.
My pain specialist did say that what I suffer from is very often misdiagnosed as prostrate problems, but because of the way your pain is presenting itself; down your leg, up into your abdoman and through the entire pelvic area, it really does sound like you are experiencing what I do.
Try getting a higher dose of morphine, and taking it more often throughout the day. You could probably take 50mg. every eight hours and find relief, just because of how little you've been taking. Initially you might experience some drowsiness after taking it, but that will pass after a week or so, so don't worry about that too much.
Your body needs sleep anyway, I'm sure that you don't sleep well, so if you have to lie down, just remember that it's helping you feel better. I'm not suprised your uroligists don't understand why you are in so much pain from your prostrate, it's because it's not your prostrate causing the pain most likely.
I had a flare up around seven years ago and they thought it was my prostrate, because I reacted when they pushed on it, it just turns out that the area around there is part of the inflamed tissue so reacting during a prostrate examine is to be expected.
Push them to get into seeing a pain doctor, or somebody simillar. You may have to go to a sport's medicine doctor, I don't know. If you have someone who can do that sort of research for you, about what is offered in your part of the world for chronic pain sufferers,get them to make the phone calls.
If you have a doctor who is willing to do the implant, than they should be willing to give you a prescription for oral drugs. It is very important for your peace of mind to get the pain under a semblence of control. If these people won't help you, you need to find someone who will.
Do not be afraid of morphine, it will help you cope until you can get treatment. Like I said in another comment, I had an emergency room doctor tell me when that if the pain got bad just do what they do in the hospital, keep taking a pill every hour until it comes under control...the worst thing that can happen is you will fall asleep...
Take heart, there are people out there who can help you, and there is nothing wrong with taking the meds. I've gone from having to stay in bed continually to having some semblence of a life, not a very active one true enough, but one where I can do some things that I enjoy, because of having proper medication.
One of the things I've had to learn is to change my expectations of what I can accoplish and set goals for myself that while challanging are reasonable considering my condition. I'm fortunate that I have my writing, as that has allowed me to "accomplish" something on a daily basis.
Once you've managed to exert some control over the pain through whatever medicine you choose.(I don't think the implant option is available to, otherwise I would have considered that as well)
The othere I might suggest is search around for any pain societies that there might be where you are. In Canada there is the national pain association that serves as an advocate and clearing house of ideas for people in pain. If there is some such group where you are, you might want to look to them for help.
A search for chronic pain organizations or support groups on the Net. should bring up a list for you.
Feel free to write here any time, these comments get sent to me as soon as there posted, and I will try to respond as soon as possible. Sometimes it may take me a day, but that's just because I may not be able to get to the computer for a variety of reasons.
hang in there Richard
14 - Richard Minjares
Hey thanks very much for your reply it was very thoughtfull It all started years ago I thought i had gonerah and it was christamss day I called my docter and said I think I have it and he said I dont really like to p[erscribe without seeing you but its christmass at the time I was an active alcoholic and when the discharge went away I thought I was better then it would come back this went on for three years and I aksed the docters do you think its my alcohole they said not that we condone it but you are on the best anti bitoitcs well over ten years it got so bad that I could not take the pain.I just moved from Hawaii the thing is I was on 100 mg tiwice dalily but im lucky in some regards while im on the pills my pian is amlost zero so what Iv done is ween off the see if the pain comes back and again i thought I had healed and have not I do have ab brother that takes pain pills primarly because he is an addict and im so affraid that a docter will think that I am even though the test they run shows their adnormal aticivity and even infection bad imflamtion anti imlfLAMORties did nothing but my worse fear is that they will cut my meds and I will have to sufffer the pian and withdraw as just the pain from the prostarte if I had to suffer it out for more then a few hours I would have to take my life thats who bad the pain awfull..I got the feeling from my docter the last time I went in got down to the 15 mg ms contin twice aday when i told them im afraid to say I think I still have the pain and will need to take a higher dose tell i can check into this pain implant where they blook the nerves from the spine to the brain in that region so that I can get off pain pills I got the feeling he thinks ijust cant get off of them I mean I feel for addicts I do cause thats a problem too but my god if Tahts all it was I would gldly go into teartment before I had to takje morphine I was active it takes the pain away but leaves me depressed and very fatigued plus I am an addict and often do have to fight the erge to take higher dose im just tried of the fight maybe you can understand and then with drawing form these things too to check my pain level is getting old to cause then hardly have enerhy to eat let alone anything it just tough and then with all thats going on in the news with people and perscription addiction the epain pills even rush limbaugh makes even us honest ones supessious iv knowen the little old grandma who was also in pain get hooked but to me thats a minor prise to pay when sufering also when they some of the docters iv incounters here in not working its like if you work I can understand you needing pain pills but oh because I dont its a crime to not want to suffer at home I mean if it just a mild muscle ach I could understand but its a pain that if not for pain pills I would probely realy have to find away to end my life scary ha..But again man thanks so much for you taking the time to reply god bless you please feel free to respond if you like take care buddy Richard!!
15 - Richard Marcus
Richard
I can sympathise with you fears of adiction. I've been clean(alcohol and drugs) for twelve years and I still will occasionally question my usage. But all I need do is feel the amount of pain that I'm in and I put that aside.
I think part of your problem, from what I can understand is the constant yo-yoing of your pain meds. Worry about yourself not what happened to other people...people become addictied to pain meds when they are either improperly prescribed, or improperly used. I sincerely doubt that you would do either.
When my family doctor first suggested morphine as a possible med, I expressed a lot of the same conserns. She said as long as we monitored it carefully there should be no problem. Keeping a consistant level is key to avoiding the wanting craveing aspects of addiction.
By keeping the pain under control with the longterm meds you will not crave anything to relieve you of the drug. You will build up tolerance to the drowsiness, I have. Even if you do have to lie down for an hour or two, so what? What difference is it going to make in your life.
If you are suffering from depression seek counceling, there are plenty of doctors who deal with chronic pain patients in theropy who will teach you methods of dealing with it.
Hang in there.
16 - Smith
Advanced natural therapies offer quick relief from pain. They have a calming effect on the nerves, restore optimal neurotransmission and prevent relapses. biogetica
17 - Richard Marcus
While it is true there are some natural analgesics they are not the answer to chronic pain suffering. I know - I've tried them and if they worked I'd be using them instead of what I'm having to use now. Currently I'm being tested on Magnesium with malic acid - we started on a high dose but my body was far too sensitive to the malic acid and reacted strongly and any good effects it might have had were offset by the amount of pain the side effects caused. So I'm now trying a reduced dose of the same med - one tablet every two days - to see if I can tolerate it at all.
However, nothing else has worked from among all the other stuff I've tried.