|
Why Not Pleasure from Damaged Nerves?
I think it's cruel that mis-behaving nerves create pain. I mean, why couldn't they create pleasure instead?? I can remember a few years back, that I would sometimes get a feeling like "pop-corn popping" instead my feet. It was mildly pleasurable -- sort of mildly ticklish. More of that please! Enough burning already....:)
Best wishes Steve |
Very funny Steve - don't we wish!
Only problem is we wouldn't be as quick to go and get medical help and would probably die quicker!!! :D But I agree it is a cruel twist of fate! Quote:
|
Those durned nerves!
Would that they COULD send some pleasure signals in their damage processes?
Thing is they are sick and or dying nerves. Those nerves are constantly sending out distress signals. They want to survive and be happy. As does the rest of us. I know that once I'd learned the whole neuro degenerating processes, it scared me stupid. And beyond! Once I tried to learn about nerve regenerating processes, it too was scary as it seemed to be a similar process....but in reverse and not necessarily in the same order. Makes it much more confusing, but well, my nerves are already confused [what's left] so, what's more confusion? In my case, I know/suspect/believe that things aren't getting worse [A GOOD THING!]. So, when I feel 'new' nerve zeeps/zaps/zings & even tickles- I put my mind to not worrying. I tell myself, with all my will that this is good. And you know? In my case it just might be working. I don't know about others who've been severely affected? But for me, the 'tickle' thing is truly a pleasure! Even on my big toe! Your nerves aren't 'misbehaving' They are unhappy and sick! Do all you can to help them... in my case the small improvements I did NOT expect are happening after almost 5 years of pain. And, maybe a lot of self-brainwashing regarding that pain. But I suspect that I've got it worse than you. IF not YOU have a lot to look forward to...providing there are no short cuts. They don't seem to be allowed. :hug:'s - j PS Megan, YES it is a twist of fate. And, we would'nt get med help as soon. But our nerves do go off with a "RED ALERT!" big time, when it happens, don't they? |
my mother had so many nasty med. problems very painful,from her 50ths
to her early 80ths when she died.. pn ,damaged nerves ,polyneuropathy. she started going to a neuro.he did every test i could think of,from feet on up legs. found a hernated disk,you could really see it,very big.. she asked when she should come back,never he said,i'm sending you to ortho dr. she was 79 or 80,that dr. he claimed was unual but the ortha dr. would stop the feet and leg pain,i thought vascular but ortho? but saw it big hernated disk..my brother and i took her to mayo clinic..they said same thing she had no trouble,they were going to put her in nursing home to rest for two weeks,no pain,they sent her home,nurse was me,she felt fine,i started hurting,noticed i was having trouble with my feet.. i arranged to have mri on back,he told my mom she could go home soon, he sent her out told me my back well spine was awful,he couldn't do anything for me..he sent me to a neuro and said he as sorry,if he knew i have pn,he wouldn't have had me take care of mom. she got lucky steve. well no more pain in legs or feet . she had a rare form of breast cancer, died 3 years later,no mophine or pain till 2 days befor she died.. i'm 61 had pn for a long time,my children ask the drs. at mayo if i was going to die, i was in terrible pain,burning,tingling,spams..they didn't answer,they answered quetions but not that..my husband passed away 8 yrs. ago they were scared..my neuro here is very good,she let them see everything on the computer. it's not going to affect her longevity,but her life will not be easy,she will have to live for the good days..steve sometimes it's hard and sometimes it's good..nurses know to much some times...i will tell you this is a tough buger,we don't have enough money for research there's over 200 problems,and some drs.. don't know anymore then we did.. it isn't fair,but so many things aren't i hope you get that popcorn feelings and even better,i mean alan got frisky after surgery or mel attacked him. who cares 2 61 yr olds had fun..:):) i'm 61 i'm having frisky times,bob my buddy is 78 and havn't tons of good times.:eek: hugs to all sue |
Shiney Sue:
I'm 60. Won't be 61 till November. Alan will be 61 in June. I'm still a hot tamale at 60!!!! lol |
mel
you know i thought so i'm just jealous,bad sue sorry mrs. tamale:)
|
Why not pleasure?
PN pain is in the brain, not in the feet, hands, or wherever the nerve malfunctioning is. I would guess that the peripheral nerve firing is too intense and chaotic for the brain to interpret the impulses as anything but pain, in all its variations.
Relief has to be multi-dimentional; calming the brain, and calming and restoring order and pattern to the misfiring peripheral areas, and restoring health to the rest of the body so the nerves can heal and stay healed. PN gets to what it is to be a human animal in all its complexity; physiology, psychology, emotion, hormones, inflammation, nutrition, social relations, hope vrs. cynicism, etc., etc. Thats why I push a holistic approach, and post a shotgun scattering of research and articles that cover a wide range of topics (much fewer than in the past, and I apologize for that, but 15 years is a long time to be dwelling on this), hoping that each thing I post will help provide a key to coping and relief for at least one other person in this forum. One thing to realize in such a complex system as you and I is the "spread effect". That's where each good thing we do or experience effects other aspects of us, making everything a little better. Of course, the same thing happens with bad, which is what got us into this mess in the first place. So, hang in there, keep trying healing and happy things that make sense to you, have courage, and you can and will cope, be happy again, and even heal if you don't give up. An example is alluded to by Sister Corita in the quote, "Love the moment, and the energy of that moment will spread beyond all boundaries." As a side note, pleasure is one of the good things that can overcome the help us heal and reduce pain. Some pleasures are bad for you and to are to be avoided, but others are magical in their healing and pain relieving effect; the love of others, good food, a successful exercise session, a good read, physical love, a good laugh, art and music, a nice massage, etc. |
Don't forget Chocolate !! :)
(Thanks, David) |
David you know I was thinking how this has made me really appreciate the simple pleasure in life. I am happy with just being in able to do pain. I remember after months of being in bed going for lunch outside. It was such a lovely day. My whole outlook on life is different.Truly all I want is a pain free and health issue free life. Just like normal things only and no more doctors other then yearly physicals. Ok now time to wake up.I think the nerves are making me kookoo
As for pain its like when I knock myself and everything gets reved up with nerves and pain. Its like why can't that make it better or kill the bad stuff inside. |
Its just a shame that we have more pain days than good ones,I'm all wished out too.I wish that I had never heard of PN.I wish they could find a cure,I wish for more pain free days than not,I wish that there was a pain med that worked,I wish that I could get a good night sleep,I wish I could have my life back.I wish that all my wishes would come true....:hug: Liz.xxx
|
Pleasure
is low intensity and usually rhythmic. It may build to high intensity, but it usually starts out at a low intensity that slowly builds as our brain adapts and adjusts. We may learn to enjoy painful experiences, and find them pleasurable. Examples are chili pepper, straight spirits, or loud music, but those "pleasures" have to be learned.
The signals from our PN injured nerves and nerve endings are intense and arhythmic, so of course the brain interprets them as pain and burning. How could I have forgotten chocolate, which I dearly love? My wife and I both have one or two pieces of quality chocolate daily. Our favorite ice cream and cake flavor is chocolate, the more chocolaty the better. |
Quote:
Wing when you said this "The signals from our PN injured nerves and nerve endings are intense and arhythmic, so of course the brain interprets them as pain and burning" Is that why they put us on meds like neurontin that changes those brain interpretations? Unfortunatly my brain still picks up all thos pain signals or even with depression it does not change the mindset. |
Quote:
As I've posted elsewhere, neurontin and other drugs have many drawbacks. PN is a long lasting chronic condition for most of us. Even if it gets better, as mine has, the healing process and brain relearning takes many years. Do you really want to take large doses of psychoactive drugs for years and years? All drugs are toxic to some degree, and interfere with normal bodily healing processes. So, while neurontin and other similar drugs partially address the pain of PN, pain-reducing doses of neurontin actually hurts long-term nerve healing. That's my idea, not confirmed by research because most neurologists still believe that PN is invariably progressive, so little research is being done on healing from PN. I posted a complete program for PN healing a few years ago. It needs updating, but you might find the broad outlines helpful. The link is: http://neurotalk.psychcentral.com/thread177-2.html , listings #18, 19, and 20 at the bottom of the page. |
Thanks. You know when I look at people here who are on meds like neurontin for ex they are not just on that but on other heavier drugs. So I truly wonder how effective alone meds like neurontin are. I guess for myself I saw no help from many of these I tried. I truly never thought though long term drugs like neurontin were harmful. I am not on any now though. I would think too the healing research of pn is hard because it comes out in varing forms for all of us.
|
David, I have always appreciated your holistic approach. Because of my former profession, I was well aquainted with Yoga, meditation, tens, and many other things. I tried them all, as well as supplements, dietary changes, exercise, etc. Unfortuanately, my pain level remained at a life threatening level - that is, it remained so severe that I contemplated suicide regualrly. I do take Lyrica now, as well as use a fentanly patch. I hate using these drugs, but am grateful for them, as they are preferable to death. Remember, not everyone has the same pain level, the same responses to alternative measures or medicine, etc. It is great to share all of our ideas, but we must remain vigilant not to come across as judgmental. We all walk our own road.
|
Quote:
I'm not judgmental. I'm pragmatic. Really. You have nothing to be ashamed of, and using drugs to control breakthrough pain is totally OK by me. When a cervical disk rupture (caused by yoga) caused severe cramping in my left shoulder muscles, and excruciating chronic pain, I rapidly progressed up to oral Fentanyl (synthetic heroine) and lidocaine patches that covered my shoulder blade at night. That was the only way I could get any sleep, and that was in a chair because even Fentanyl and lidocaine didn't control the pain when I was prone. I was thankful for the drugs, for the my primary care physician who prescribed them, for my physical therapists and my body's natural healing ability. Opiates badly constipate me. I think I'd die of some colon disorder if I had to take opiates all day for any period of time. One weird thing is that if I took just enough to move the pain level from a 9 or 10 to 3 or 4, the drugs didn't make me high at all. I could even do crossword puzzles after taking them. If you need to take drugs to control extreme pain, of course, that's what you need to do. Pain controlling drugs, however, are only effective for a time. As required dosage increases and time goes on, side effects increase and eventually become life threatening. That's not judgmental, its practical reality. So, while you take the drugs you need to take for pain, I hope you continue to look for non-drug alternatives to control the pain and eventually reduce the pain to a degree where you can live drug free or usually drug free. Have you looked at the American Chronic Pain Association ( http://www.theacpa.org/ ) or The American Pain Association ( http://painassociation.org/publicandpatients.htm )? I really like the ACPA page, "Ten Steps from Patient to Person" ( http://www.theacpa.org/people/ten_steps.asp ). Also, the Weekly Medical News Newsletter ( http://www.medicalnewstoday.com/ ) often has useful articles on pain and neuropathy. What I'm saying is, don't give up or give in to despair or cynicism, for that puts one on a slippery slope its hard to climb back up from. People who overcome chronic "incurable" conditions share certain characteristics according to Dr. Andrew Weil in "Spontaneous Healing": 1) they never give up looking for a cure, 2) they to keep trying different things that make sense to them, 3) they never accept discouragement or a negative prognosis from medical personnel or family or friends, 4) they look for and accept help from others. This is from memory from years ago, so please forgive any errors. The book is at http://www.amazon.com/Spontaneous-He...5128782&sr=1-1 . Also, I know I can come on a bit preachy and "superior", but I don't feel that way either. It's not ego or insecurity on my part. There's a practical rationale to my exhaustive discourses. I was a teacher of learning handicapped children for many years. One principle of education is called zero based teaching, where you present all the material necessary to master a topic and review it all over and over, even though the student may know some or even most or all of the material presented. By presenting as if the student knows none of the information, the teacher is sure not to leave out any essential information the student needs and to clarify any misconceptions the student may have. That habit is so ingrained after 15 full time years of teaching that I can't not do that when discussing a topic. So please forgive me if this is the case. The last thing I want is to irritate instead of helping. Take care and feel better. |
pleasure vs pain...
I have a few thoughts on this concept.
1) Pleasure is experienced centrally thru the dopamine reward system. Basically for survival, pain is an aversive stimulus...to urge us to move on or stop the activity causing it. We would not live long if pain stimulated pleasure or dopamine release. (this is for the majority) 2) however, there are people who have brains that are wired differently. Extreme examples are psychopaths...who are pretty numb and get injured and don't mind. These types make good soldiers. The word psychopath has changed in meaning, not all psychopaths are criminals...they just don't respond to remorse or conscience and they can tolerate alot of pain, and don't mind dispensing it too. 3) less dramatic than psychopaths are the low arousal people, who can tolerate more stimulus than others. These people love strange activities like S & M, and dangerous sports, and don't mind getting banged up. They have somehow learned to overstimulate themselves for a dopamine hit. It is believed that these types have lower endogenous daily dopamine and hence have to create it with extreme behaviors. When you see people with impulse control problems, who get "off" on bullying others, who need recreational drugs to feel "better", who drive excessively fast all the time, etc ...these are increasing dopamine in the brain with those behaviors. Reinforcing them, to create a style which they cannot easily break out of themselves, without help. There are two types of temperature neurons in our hands/feet. The cold ones supercede the heat ones in the spinal tract. That is why menthol rubs cool us and block burning signals. Menthol stimulates cold receptors, and that temporarily blocks the heat sensing ones that seem to be the first to "go" with PN. Menthol does not create cold...just stimulates those nerves specifically. |
My son is a decorated soldier. He was wounded in Iraq. He risked his life to save civilians, including contesting orders to shoot, when, his commander was in error, and dozens of innocent lives could have been lost if not for his courage and wisdom. He is not numb, but a caring wonderful person, who held in his arms, a dying ten year old shot in the head, in a fire fight. A kid he bought shoes and ice cream for. Sounds like a psychopath to me, right? He has more to complain about as far as pain goes than this whole forum has put together and multiplied by 10.
HE IS NOT A PYSCHOPATH. He joined the National Guard to go to college, and got stuck in some war in some God forsaken hole, and he made the best of it, has come home and made a life for himself, with his disabilities. Psychopaths are exactly what makes a poor soldier, it is what makes a war criminal. My other child did the Olympic Trials. She is not into S and M. She works hard, has an advanced degree. Some people dare to do what others can bearly dream to do. And it is not because they are into sadism or masochism, nor because they 'hurt' less than others who attempt the same. I have often heard people tell my daughters, 'It doesn't hurt you as much as it hurts me to do that." Sorry folks, it does hurt, just as much. There is no cure for PN, yet. There are cures and treatments for the diseases in some cases, that cause PN. To those who have found that they can manage their disease, perhaps, they have a different disease than those who yet struggle with their symptoms. PN is a symptom of a greater illness of the body. Yes, by all means, try to manage your disease with what ever it is that works for you, but allow others, to manage their symptoms, with what works for them. Pain is personal. Each and every one of us, has our own disease. And, If Dr. Weil had the cure for neuropathy, he would be richer, still. He has made a good living selling his philosophies on disease management, and in general, I agree with him, but, not all humans are blessed with the ability to live their lives in peace, harmony and wealth. "It is unwise to be too sure of one's own wisdom. It is healthy to be reminded that the strongest might weaken and the wisest might err." Mahatma Gandhi (1869 - 1948) |
I understand that some personal feelings might be felt due to the discussion. However, let's please keep the thread on-topic to the OP, please.
If there are some personal upsets felt, please place them in PM per the guidelines. In reading, I see that broad statements were made and not with the intent to cause upset, flame any particular individual or set of individuals. Let's please allow the thread to stay on-topic, with personal disagreements taking it off-topic placed in PM for hopefully a good resolve. I appreciate everyone here. KD |
Quote:
Dr. Weil writes about how to live a powerful and health promoting life instead of living as a helpless victim of circumstance. He never offers a cure for anything. None of us are "blessed with the ability to live...(our) lives in peace, harmony and wealth." That takes a lifetime of consistent effort. Of course, a serious injury or chance exposure to a debilitating disease can make all those efforts moot. Even then, I think there's a lot of value in the current American folk wisdom, "It is what it is. Deal with it." Gandhi's quote is right on. Chaos is one characteristic of the universe we live in, and luck and chance plays a big part of our lives. My mom used to say, "Don't act too smart, you never know what's going to happen." |
Can we stop preaching to the
respective choirs? Please? And get down to the key issues of how come pain as many of us truly KNOW it too well, isn't ever pleasurable? HUH?
Last nite and repeated tonite is an interesting set of 2 one hour shows on the discovery channel about first the Brain, and second the Nerves. While I missed parts of it last nite? [Dozing is a nice thing on occasion?] I plan on paying attention tonite. The snippets I saw particularly on the nerves were not something new [to me-acquired thru lots of reading] but the visuals and explanations are simpler and graphic to orient those around you about how nerves work correctly then not. David while I appreciate your own approach to your OWN neuropathy, I do not think it could 'cure' my own disease, which is a somewhat rampant auto-immune disease/condition/syndrome. I DO appreciate how the mind can help the body heal in many ways, and I use some principles in my own pain management regimen...usually either distract, ignore or tough it out. But then, I have a few other 'issues/diseases/conditions/syndromes' going on as well. None can be clinically connected [I am NOT a hot-house rabbit or mouse!] nor would I expect them to be. There have been instances during my onset and progessions of pain that I truly wished for amputation -knowing full well that it would not STOP the pain per se. That said. We all have to deal with it in our own way. Helping others to FIND their own way -make their own decisions and choose the routes best for THEM is the ultimate service that WE as victims of these pains can do. To espouse one philosophy over another is a dis-service. There IS a place for pain medications in folks suffering from PN! I know! I've used them! I have benefitted from them! I also can truly state as an idividual that some medications may work at times and no longer work at others. Face it! Our bodies have a way to 'accomodate' or become innured to such therapies after a time. Some folks here tho, can't even tolerate the most modest of pain-killers -even Tylenol. And, my heart goes out to them. IN this complicated world, to imply/say that NO meds is a 'better way' to go is blanketly naive. I say this as one who MUST take one med daily another Weekly-With no OPTION, and will be back on another to ultimately save my life in the 'long-fun'. UNTIL and when The medical community can describe PAIN and PAINS astutely, no blanket statements should be made. Nor can they objectively be truly capable of treating US as a group. Let's keep it real here and simple and human. Nothing grandiose, please. We are all people [simple or not] just trying to get by. Hugs to all!:hug::hug:'s - j |
That's a cool idea, Steve! I wish there was some way they could trick the nerves into generating pleasant sensations rather than the pain they do generate! :D
|
Several issues to keep things on thread topic but first of all, my son's job was not to keep psychopaths 'in line'. Psychopaths occassionally slip thru the military's screening. I think more psychopaths are roaming schools and college campuses. Psychopaths may make better killers, however, they do not make good soldiers. At least not in the military service that I hope my country has. We have asked a lot of ordinary every day people to do what most of us, simply could not even attempt to do. My son, and his 'men' (regardless of gender) were of the utmost quality, and I would hope that most Americans would understand the integrity of the majority of these ordinary people, who perform extraordinary things every day.
Many of those young people returning without legs, have 'burning feet'. My son is not the issue. He is supported, and supporting. However, tens of thousands of injured people many of them with neuropathic pain, who may be reading this forum, are the issue. People with injuries, such as amputated limbs, suffer from neuropathic pain. I do not think it is ever a good idea to stereotype people. I don't think that harm was intended, but, I feel it could easily be interpretted that way by people far more involved in the military experience than I. I think a good many of them have come back with psychic pain that many of us, can not comprehend, and physical pain and impairment that makes me shut up and gut it out for fear of embarrassing myself. We of all people, should be aware of the stereotypical 'chronic pain patient' or 'drug seeker patient' labels. People do not that easily fit into 'types'. Some people have a higher threshold for pain and stress. Is it because they do not feel it or is it because they can bear more? Not for me to judge. One can not assume because one can 'control' one's pain that 'one's' pain is equal to anothers, or that 'one' has some secret, or some trait that makes one better at managing pain and if others only mastered this process, that they would be free of suffering. I have seen people faint from a small cut, and yet others joke with me while I stared at the shards of broken bone and marrow almost poking up my nose as I was upside down in the front seat of their crushed car, trying to hold their arteries shut while the fireman cut them out of their car, cracking the windshields in preparation to use the jaws of life, releasing toxic silica sand thru the car. Praying the entire time for the patient not to code, because the steering wheel was wrapped too tight around their chest for me to ever attempt a rescusitation, or for the car not to blow up. Am I an adrenaline junkie or did some one just have to do the job because others did not or could not? I wasn't thinking about sex at the time, s and m was the last thing on my mind at that point. I wanted a drink of water, but it smelled like a meat market, no one could get me water and it was 140 degrees in there. I know when I had a patient in pain and I held the morphine syringe, I gave it. I didn't ask them to breathe deeply and think happy thoughts. We, do not hold the key to another person's pain relief and I pity those to whom we come, with our issues. Not all suffering is pain. Being dizzy or nauseated isn't painful but, it is suffering. So is incomprehensible sadness and grief. If I can relieve it for a being I will. Dalai Lama, and I don't think there is one work of his out there that I have not read, states. “Our prime purpose in this life is to help others. And if you can't help them, at least don't hurt them.” We go to others for help and then complain. Not all medical professionals are compassionate, neither are all western pracitioners uncaring people ready to poison us with pain relievers. They, like many of you, feel they have the answers to pain. Many of them are just as sincere, just as caring. Pain is extremely complex, and I would not attempt to explain it. I am a medical professional with post grad training, usually one, who administers pain medication. You pretty much get a good idea of what pain looks like when you spend a lifetime trying to relieve it for people, with whatever you have at your disposal or whatever you wake a doctor up at 3am to beg for for your patient, while you get cursed at. Even the honored Dr. Weil, may get irritated night after night, when he is awakened by a medical professional asking for yet higher and higher doses of IV meds to stop the pain of a dying patient. You let the doctor vent and then make a suggestion, and he/she usually agrees. No apologies are given and are they seldom asked for. I do not think that sometimes people understand just how stressful the medical profession is. It is not what you see on TV. Lots of nurses, standing on feet for 12 hours have neuropathy, and they can not gork themselves out with drugs lest they kill you with brain fog. Doctors get sick too. I make a point of asking my doc, how his/her day is going and if they are getting burned out yet. I actually care for a number of reasons. Dopamine is a pleasure neurotransmitter, it is also one that is involved with movement disorders. Some people do not have enough dopamine receptors and have Parkinsons or RLS, among other diseases. Some have too much dopamine and have Tourette's or motor tics, or psychosis. Opiates are a neurotransmitter. Some people do not have enough opiate receptors and therefore, do not feel the 'rush' or the 'relief' that others get from the same dose of opiates. They feel nothing when it is given to them. Substance P is involved in the transmission of pain. Serotonin is involved. Norephinephrine is involved. GABA is involved. There are likely neurotransmitters involved that we are not even aware of yet, that play a role in pain. There may be gender differences, ethnic differences based on drug metabolism. What is used to put some people into a slumber causes horrible agitation for others. It is extremely complex, and people far smarter than any of us, are working to develop ways, different ways, to control pain, because pain likely has a genetic fingerprint. Pain is one component of neuropathy, and much can be learned from those who deal with any type of chronic pain problem. Functional loss is another component of neuropathy, much can be learned from those who deal with the challenges of having lost a limb, or those who need to use adaptive devices. Cooking organic food from scratch with splints and adaptive devices is a marathon. Autonomic, or automatic functional loss is yet another component of neuropathy. Nerves to many body systems deteriorate and die in neuropathy, so much so, that some people can not stand without drugs to raise their blood pressure. Try cleaning up after cooking that organic meal, if you can eat it without it backing up your dysfuncional denervated esophagus. Many of this happens regardless of what steps the individual takes. We are all glad that some members have found relief. As excited as one may be that they have found the magic recipe, it may not be the magic recipe for another. There may be only the acceptance of pain and degeneration as the inevitable course of THEIR particular disease, and this does not mean they have 'given up'....it means that this is their disease process and course, at this point in time. I was very 'into' eastern and holistic philosophies when hardly any one knew who Andrew Weil was...or Depak Chopra. Of course, stress, or what we construe to be stress, will aggravate any disease. There comes a time when the disease itself becomes the stress. When you struggle with braces, and adaptive devices, and what you used to accomplish in 5 minutes takes you an hour, it gets stressful. Often times people can not do what they used to do, such as use their talents to earn a living, and then they have financial stress. It is hard to 'reframe' things when your belongings have been hauled to the curb, or you are uninsured. Those folks really don't care about the chaos in the universe at that point. I am sure, in most cities, there are people who have been kicked to the curb, or need their medicine paid for, or need a bone marrow transplant, or blood transfusion or adoptive homes. Nerves are working when we don't notice them. How they work, medical science admits, they yet do not know. I do know that nerves and nerve are two different things. |
Thanks for the perspective, Cyclelops. If any one person had the one true answer for dealing with chronic pain, we would all be using it. I was pretty taken aback by David's post. I don't think that because I use fentanyl and lyrica that I am "giving in to cynicism or despair"...???? He also stated that opiod use invariably leads to increased dosage use. However, some of the newest research shows that addiction, dependancy, and tolerance do not necessarily occur with all people who use opiods for chronic pain. I have used the same (lowest) dosage of the fentanyl patch for 8 years without any loss of pain relief or need or desire to increase the dosage at all. I would hate for anyone who is really sufferring and cannot get relief through non-drug methods to be scared off of trying drugs in order to have a happy or productive life. I hope that everyone will keep an open mind about everything that might help them, as I try to do. I hope I don't ever hurt anyone's feelings. Sometimes that happens when we communicate in writing rather than face to face, even with good intentions.
|
I have gone off and on opiates without any difficulty over the years.
Each individual has to use what they feel is effective for them at the time and manage the side effects. There are risks with many of the drugs on the market, but, there is also risk in immobility. If pain meds allow for greater activity, and more normal life style, that is appropriate use. Different members have success with managing their specific PN symptoms with their specific modalities, and likely get frustrated when their approach does not work for others. It is tempting to think that perhaps, if it were just done properly, it would work. It may as frustrating as you know when you have done what you could, and it did not relieve your pain or suffering, not for lack of trying. PN is so diverse, that to even address it in one forum is difficult. Autonomic Neuropathy is incomprehensible to some one who has no experience with it. Sensory neuropathy is foreign to those with motor neuropathy. Hereditary Neuropathies can have some peculiar symptoms that are so rare, that no one can relate. Functional impairment brings different issues than pain. Peace comes in knowing you are doing what you need to do, to live your life to the fullest. Eventually there will be breakthroughs. I still stick with my premise, the cause of the PN is important, as it may be treatable. If it is not, as is apparently the problem in my case, there has to be the acceptance on my part, that life will require more effort and be less comfortable than I would have wished for myself. I will certainly do what I can to make it full, fun, exhilarating as possible, whatever that takes, and on bad days, as Sue said, I have 3 comforters and a yellow dog, has to be the yellow dog, the other two won't work. Don't get me wrong, I love them, but one is 90 pounds and cuts off my circulation and the other is 75 pounds but bony. It has to be just the right recipe, and it won't work for every one...oh, and I down a few pain pills, and antispasmodics too. Not every one who uses opiates becomes addicted and drug seeking. Most people prefer not to be on opiates if at all possible and fight it to the end, but there comes a time, when to lead a normal life, or half normal life, medications must be used. When they are used, people need to understand the implications and make informed decisions. |
I also was also taken a bit back by some of David's remarks,as well as Mrsd
bet that's what we are here for..If we all agreed it would be a boring fourm (Mama Sue) I have seen thing's in Truma, including Med student''s,nurses,ect. faint and fall on a patient..But they shaped up,they better,believe me,if they don't new job..I have seen a 4th year resident go blank,and have seen a nurse tell him what to do..Yes brain's work differently, a man was brought in working under a truck, just jam's something dumb under it,and fills no pain,honest no pain,he saids but I'm looking at a man with no leg and so help me,I feel pain..Oh please put him out,it hurts and for awhile he will have pain but not now..It was my brain hurting,sometimes it got so bad I had to walk out.for the patient..Rare but It did happen. Susan you take what keeps you where you need to be,not one thing wrong with that. And i'll stop because you handled yourself just fine and we are all different David..We handle it in many different ways,I was vrey much like you and it worked very well,meditation still does. As my wheelchair, you can only fall so many times,then more pain from broken bones. and after 3 yrs. I agree to take morphine,don't know why it took so long,Oh i'm not fying high,belive they won't let you, and life is interesting even if you do it more slowly. This was interesting but Cyclop went swiming for 20 min. today,I think that's amazing her brain tell's her swim, that's her brian saying slow down 20 mins enough because here comes the pain. Pain even though it hurt's let's you know your alive,and must fight to stay that way,pain is slow, then it overwhelmed us. My son fell 50 ft off a rock no injury a man from Canada but landed on his head ,he didn't survive,makes you wonder,oh well. May you all have the good times,get under 3 down blankets and the right yellow dog..I'm got the flu where's that dog..Hugs Sue |
Quote:
Best Wishes, Steve |
Quote:
Steve |
If we all agreed and persued the same treatment or outlook on how to deal with our PN and our life it would be not only boring but pointless to be here.
There have been times when some things that have been asserted here or the way they were presented have struck a nerve in me or rubbed me the wrong way. I understand that when you are in pain it can feel aggravating for people who you perceive cannot be in as much pain as you are to assert that if you only would lose weight, or exercize more, or get more sun or think positively that we would feel much better and maybe even reverse the damage that has occured. Most of us were living pretty full active lives before being blessed with PN and its sometimes upsetting especially when you are in pain to read that we may have brought this on ourself or arent doing enough to combat it. I have felt like this, we are only human we will sometimes resent what is being said. That being said I dont see anything wrong with what David has to say. He is not saying that there is only one way to approach PN and pain, or that you should never take pain medication. Actually he has said that it is necessary at times and in some cases to take pain medication to be able to live your life and function. He also presents an alternative or supplement to what is offered by most doctors for the treatment of PN. That is what i am here for. I have learned a lot from reading the various theories, experiences and treatments that people have had and what they have learned in dealing with their PN. I am interested in what they feel has worked for them and what hasnt. If conventional medicine had all the answers we wouldnt be here. I think that it would be a shame if people were hesitant to post with the information or outlook that they have because they might not agree with the conventional wisdom or what other members of the group feel. We dont want to get into a group think mindset here. Because someone doesnt agree with us or doesnt have the same approach as we do doesnt make it a personal attack or insult. I dont want to see people lose interest or feel its more trouble than its worth to post.We all lose then. |
There is a difference between addiction and drug tolerance, where increasing doses are required to get the same pain relieving effect. I've read from many sources that people who use opiate drugs for pain relief develop tolerance to the drugs, but rarely become addicted. Tolerance is not an issue with terminal patients or for short term pain relief, but our PN pain goes on for many years.
If you don't want to try anything BUT drugs to get pain relief, that's your privilege and choice, but I'd be remiss not pointing out that there are always alternative and complementary approaches. You and I are never restricted to doing just one thing unless we choose to. To me the issue is health, of which PN pain is but one facet. For example, Andrew Weil has written extensively on reducing inflammation and calming down autoimmune reactions. You don't have to accept that point of view or change your life in any way, but I have a right and responsibility to state it here in as much detail as I think is appropriate. If you take offense at that where none is intended, so be it. I think several of you are projecting a lot of your feelings on me, putting words and meaning in my posts that wasn't intended, or wasn't there at all. Rather than refute what you've written I'll merely state that you all have my deep sympathy and compassion. If I've offended, it wasn't intended. I've tried to shed light on the subjects and bring up points so that we all find clarity in a discussion, not put anybody down in any way. If you feel put down, please forgive my poor choice of words. P.S. I was composing this while HeyJoe submitted the above posting. |
some technical explanations:
This is a pretty good explanation of nociception:
http://en.wikipedia.org/wiki/Pain_and_nociception And this on dopamine. Dopamine is a pretty complex subject and involves alot of chemistry. http://en.wikipedia.org/wiki/Dopamine Every patient reaches a point in pain perception, that is unique to them, where intolerability occurs. The concept of chronic pain is very hot right now in professional circles. Many continuing education requirements for relicensure in most states for medical professionals, require at least one course in chronic pain management now. Acute nociceptive pain that is not treated properly is thought to be a trigger for chronic pain. However, using opiates for certain forms of pain prematurely, can increase the number of pain receptors centrally and lead to a vicious circle for the patient. I attended a chronic pain seminar last spring, and this factor was discussed at length. In the area of chronic headache, use of opiates actually CAUSES more headache. The tertiary clinic that sponsored this lecture along with the Univ. of Michigan takes all patients OFF narcotics when they enter their program. They have found that use of narcotic meds twice a week can induce chronic headache. I believe the continued research into the central pain pathways that become abberant in chronic headache, will lead to better management of neuropathic pain. Some of neuropathic pain is nociceptive. That is it can be blocked in the periphery with Lidocaine, menthol, for example. Shingles pain is the classic presentation, of nerves that become damaged in some way by the herpes zoster virus and keep firing when they are not supposed to. And some of neuropathic pain is central. So that the medications for this problem involve both methods of pain control. And as we all know, this is not an easy subject and varies from person to person. I personally wish that the research finds ways to heal us. Not just block the central problems. Medicine always seems to go toward the short fix first. When the long fix is discovered, PN then may approach a "cure". |
:Help:I wish that I could take painkillers my PN pain is permanently between 9-10 nothing and I mean nothing eases it.I spend most of my days and nights on the computer looking for some sort of relief or reading up on whatever I can find on PN, looking for something anything to help with this bleeding crap of a symptom/disease whatever you wish to call it.Now if one of you can help me with my pain please tell me how in layman's terms ? not everybody went to college......Liz. :hug:
|
When "painkillers" don't work...
Are you talking about narcotics?
If so, then you should consider a Fibromyalgia diagnosis also. This disorder ramps up pain perception up to many times normal for these patients. Typically narcotic pain relievers do not work for these patients, because endogenous endorphins are very high and sitting on the receptors. Other methods of pain control are then used: This thread explains some of it: http://neurotalk.psychcentral.com/thread20030.html With fibromyalgia there is often a trigger in the body that sets off the pain cycle. It can be arthritis, PN, a car accident or trauma, even a vaccine. A person can have multiple diagnoses. |
:icon_confused:At the beginning of my PN.I was able to take painkillers after a yr or so it all changed.At first my GP.thought I was overdosing (I would go to bed fine and would wake up in hospital) during the night I would throw up,and when my husband tried to wake me up he couldn,t,sometimes I would be out of it for days.It went on like that for a while my Dr got Brian (DH) to keep an eye on my meds,but every now and again it would happen,no warning whatsoever I would go to bed fine and wake up in the hospital days later (I always threw up while sleeping)My GP tried different painkillers to see if was them it didn,t make a difference,then back in 2005 it happened again only this time I inhaled vomit into my lungs and ended up with pneumonia.This time it was a helicopter ride to the nearest city (I live in a small mining town) and when I came to my PN.had taken over my entire body from head to toes,over the next 3 mths I regained some feeling back from waist up not 100% but better than nothing.My Dr and myself cant say it was the painkillers too many ??? but I did try taking painkillers again about 2yrs ago and my husband noticed changes coming over me so I stopped taking them,every now and then I talk my Dr into trying again because of my pain.So we tried again about 9mths ago and the same thing happened,but it didn,t get to coma stage,A whole heap of other stuff happened also but i'd be here till doomsday writing it down,but you get my meaning on painkillers ?... :Scratch-Head: Liz...xxx
|
Painkillers is a wide net. What kind of medications caused this?
My next thought is, have you been tested for acute intermittent porphyria? |
~~ All opiods (< or opiates) not sure what you call them,but you get the drift.As for being tested for Acute Intermittent Porphyria I have never heard of it,so my answer would have to be no......Liz.
|
Hi. I can relate about meds. I am not at the same point I was last year pain wise thank goodness. At one time last year I cried through vicodin every few hours. I have tried contless meds with little success actually better off them all together. This is why my docs have encouraged a scs or catheter, Right now for me that is to big but have you looked into something like that if it is right for you. I was also told cause some of my syptoms though have pn alo lead to fivro which meds don't help for.Mrd D at the Cleveland Clinic too they take all patients of those meds too and you have to learn to retrain your brain.That with those meds your brain becomes extra sensitive to pain. Maybe I am off. I was a little out of it in pain during the lecture.
Hang in there I do know the trapping fear of nothing helping the pain. I hope you do find what works for you |
| All times are GMT -5. The time now is 06:07 AM. |
Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.
vBulletin Optimisation provided by
vB Optimise (Lite) -
vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.