Good pain article
 

in the latest Newsweek magazine. Both acute and chronic pain are discussed. Because of the Iraq war, pain is a hot research topic now and the article reports new findings. There are currently no treatments for chronic pain that are totally safe and effective, but there are many helpful treatments and approaches discussed in the article.

The article is too long to quote here. The link to an online copy is http://www.msnbc.msn.com/id/18881802/site/newsweek/ .

Feel free to share this in any forum you think appropriate.

Nice to see you
 

From the old Brain days......that is a great article. You know.....as we age, it really is tough. As a child...and even a young adult...I felt invincible. I never had any pains...oh..the occasional shin splints from running 15 miles...or the muscle pull from over exertion...but now.....the mysterious aches and pains that are so overwhelming.....each day is a struggle. The pills...the doctors....the feedback....there is no magic pill...no brass ring. It is what it is.....in the 1800's we all were dead by 60, so these issues never really took over...but the aging baby boomers are experiencing so many aches and pains. Anyway...I always have enjoyed your posts...they have been definitive and right on the money.

Good thread
 

Thanks David,
This was very interesting and stirs hope.

I'm passing this one along. It taught me some things about pain too.
Billye

Wow! That was a very enlightening article. Thanks for posting that!

Good article....
 

Pity it's taking a war to get anyone try to define pain tho... - j

Thanks - great article
 

Having severe FM for 23 yrs and now RSD I truly appreciate the article. FM 23 yrs ago was almost unheard of - even at top teaching hospitals. They may have heard of it but had no ideas how to really treat it. Only certain drs at those hospitals knew and you were luck to get to them.
thanks,
Sydney

Isn't it too true that once those ...
 

circuits click ON they forget how to click OFF? There have been times I've really considered pain-blocks to give me a break, but the nerves are the ones that can be blocked effectively...SIGH! - j

Bump up
 

The article addresses in layman's language many of the issues brought up the past week in this board. From the many postings the past few days, it's obvious than only a few of the posters have read the article.

Our worst enemies in dealing with chronic health issues are ignorance, strong negative emotion, inactivity, cynicism and resignation. Knowledge is the first essential step in effectively living with and eventually ameliorating a chronic health problem if amelioration is possible. That's especially true with chronic pain.

The article, without offering solutions, explains what chronic pain is and how it differs dramatically from acute pain. It speaks directly to all of us in this board. Unless you understand the basis of your chronic pain, you're just guessing on what will magically make it better, and are bound to usually be unsuccessful.

Don't expect your doctors to be effective. If they knew what to do with our chronic conditions, the conditions wouldn't be chronic. My experience, duplicated by many on this board, is that our doctors don't have a clue how to diagnose and treat PN, and that includes neurologists. Most of their diagnosis consists of naming our problem, but not diagnosing to heal. Instead, they listen to drug salesmen's pitches and then throw drugs at us. All drugs for PN and chronic pain as yet offer only partial relief at best, no cure, and loads of side effects.

Whether we take drugs or not, we can do a lot to help ourselves. It's up to us. Most of the people on this board who have taken responsibility for their health and healing have either gotten better, or have learned to be at peace with their condition so they could live a good life.

I'm toying with the idea of adding a small amount of anticonvulsant drugs to my daily pile of supplements. Maybe something like 100 mg. of Neurontin twice a day would be about right.

Neurontin alone wouldn't be healing, but in combination with all the supplements I take, diet, exercise, happy thinking, etc., it might tip the balance enough to calm the hyper excited brain receptor areas and end the chronic PN pain I've lived with for 14 years now.

I've got to think this through more before actually asking my doctors.

David I understand completely
 

I just want to warn you to explore ALL the choices and what benefits vs. side effects each can provide.

I am just curious about one aspect you state: 'Hyper-excited Brain receptor areas'....Are you sure THAT is where the excitement begins? It's like tracking any electircal short circuit...it's not necessarily in the BRAIN...it could be damage, continual or healing from the periphery to the spinal and on up...

The current mis-programming, or reaction from the brain to the stimuli it's getting from those external malfunctioning nerves...well, I don't know about you, but at times, some 'nerve-block' experiments do sound kind of nice, were they not so invasive. Anything that could change, block or simply turn-off the circuits for some bit of time, sounds delightful...even at times to the extent of actually KILLING the nerves so nothing is felt. I think Kmeb could have volumes to say about this if she's up to it..Think she posted that she'd be having some major tests this week.

Each step we take to control or deal with our pain, well, as you well know...has to be more than well informed. At times I feel as if we're swimming in a sea of medical and pharmacological ignorance.

In that, I mean we take an informed leap, only to find out later...no matter how hard we try to keep up with trends and problems...that what we've done was ultimately harmful... I feel like Seams Like Stitches...I do really want a CAVE! - j

Gee, David, that sounds like negative thinking and a little cynicism to me regarding conventional medicine. I would say that I have had 6 crummy doctors to 1 good one, but the good ones are good. I go to a Famly Practice doctor who is very interested in my idiopathic PN, reads all the latest research, listens to all my ideas for treatment, and reads the articles I bring him. I am an active participant in my care, and the medications I take have literally saved my life. There are some drugs that have side effects or cause problems, but the same is true of supplements, some of which are drugs themselves, just unregulated. Unfortunately ther have been two research studies lately implicating the taking of supplemental vitamins and folic acid lately, for example, in causing serious health problems (the folic acid increased colon cancer, I believe, can't remember the other study right now...). I think we all just have to be responsible and read and try to find docs that will work with us, and be careful in the drugs and supplements we take. I am glad you have found a way of dealing with your pain that works for you, but I feel we all have to find our own way with pain.

I agree that the hypersensitivity can be anywhere from the spine on up. But, it's one nervous-muscular system. Whatever quiets one area should calm down everything.

Drugs scare me a lot. Everybody here has horror stories to tell about unexpected serious drug reactions in themselves, family, or friends. My mom at one time took a handful of different drugs every day, and we thought she was senile for years! My dad was hospitalized twice the past year because of drug side effects, one almost fatal.

I find the whole drug enterprise unscientific and illogical. Drug testing is short term but prescriptions for chronic conditions are long term. Drug testing can't begin to cover all the variables of our makeup, diet, and other drugs we take. Horrible, sometimes fatal or permanently damaging side effects are too often ignored or thrown out by the companies testing their own drugs, as with Vioxx and Phen-Fen. That's another whole discussion, that the companies which stand to make so much money from FDA approval are allowed to do the testing leading to FDA approval.

Clinical experience is better, but it's hard to connect the dots between drugs or drug combinations and symptoms. Too often, doctors prescribe another drug to reduce drug caused symptoms and connection isn't made or reported, especially if the bad side effect is rare.

Thanks for the response. You have helped me a lot with your thoughts and observations. I think that whatever provides relief AND improves function AND general health and well-being is the way to go. Long term opiate or steroid use might give relief but wouldn't pass the rest of the test. In contrast, eating a healthy diet and appropriate exercise would, even though the relief is subtle and builds slowly over a long period of time.

What I'm thinking now is that electro-stimulation (with the ReBuilder) provides marked pain relief and reduced numbness for me. There is evidence from animal research that one way that pulsed electrical stimulation helps is by reprogramming the nervous system, from the nerve receptor damage site to the cortex. Before asking for Neurontin, I'd be safer using the ReBuilder twice a day instead of my current once a week, to see if that leads to permanent improvement.

David, I know you have put more
 

than a lot of thought into this all...BUT...there are times, when the benefit/pain ratio rationale has to come into the picture! I KNOW you have been more than a searcher, no, an advocate in the search for alternatives...but like others here, it could be something as simple as putting your wallet in a different pocket? In my case, it is not that simple....I do have one heaping, raging, autoimmune reaction going on thruout my systems. It is causing havoc on who knows what else? Please, get this aspect double and triple checked...I cannot tell you what waking up each day with 'something new' means to me...nor would I ever wish it on my worst enemies [not that I have any] but you do know what I mean.
It's the danged all fear we all have to deal with!
I am sure BobB has a word or two to say about this all...I hope he does. He's shown strength that makes me feel like a wimp! Rightfully so.

Getting down to business, check out some sort of pain management clinics in your area, some might just have the or a philosophy that meshes with yours and can scribe meds judiciously to meet your needs and dispel your fears...Both the needs and the fears are REAL... they are not imangined.
It is a need, and a need to understand to control what aspects that we can control about how we are treated that is more important..

That all said, try it...who knows? It might work? Nothing ventured/gained and all that. :hug: and then some - j

New thought?
 

As long as we can function....AND speak in complete sentences that make sense...I figger we are doing pretty GOOD...Not to mention walk a hundred feet without going seriously TILT!?

That life is good is a matter of perception...I know of others with other conditions that make us all seem small by comparison. I hope we all learn from them and rise to that standard. David, you have been a standard for me to rise to in ever so many ways. That you hurt now, and admit it, well, means it must hurt a lot! That you are so honest about it means a lot! To all of us. I just wish we all could spread it out and make it less! - j

PS I would KILL for a TENS Accupoint and the 'instruction' that would go with it! That thingie woke up my nerves [what I have left] and I'm not sure I want more or want them to go dormant....Hummmm. Verry interesting sets of new nerve zeeps...or activations or awakenings or whatever...stuff happened?

Dakota, I agree
 

with everything you wrote.

Regarding supplements, they CAN cause problems. If a little is good, a lot might be bad. There is plenty of information available, including in this forum, on safe and effective amounts.

We should all be aware that hospital error, doctor error, and drug side effects together are one of America's leading cause of death and disability. I have nothing but sympathy for our overworked physicians and nurses in our fragmented and barely functional medical system. I have a lot less sympathy for our greedy and irresponsible drug and medical insurance industries. Needless to say, it is critical for each of us to be knowledgeable and to take responsibility for our own health (as you have done) in order not to be harmed more than hurt in the current managed care/HMO/PPO medical environment.

We all need to not be alone with our pain and fear. This forum plays a critical roll as a chat room to keep us connected. But more than that, this forum is an invaluable resource if used as an empowering learning tool, better than most physicians have available through traditional channels.

Part of the problem in defining pain is that we all feel pain differently. A type or level of pain that might drive me crazy may be barely felt by you. In nursing school they couldn't pound it in hard enough: Never ever judge a person's pain. If they say they're in pain, they are. As to how bad that pain is, falls under what I stated above; we all feel pain differently. The rating scale still in use, 1-10 usually, is actually very effective for rating pain. Chronic pain, too, can range from 1-10, varying on different days. What seems to befuddle doctors is when we have a pain that they can't point to a specific injury as a cause. For someone like me where they haven't found an underlying illness I'm sure they wonder how much of it is just in my head. :rolleyes: I'd like to, for just one of my worse nights, let them experience the pain and discomfort I deal with. *Then* they would 'get' it. I hate it when the doctor acts like I'm simply imagining the pain. "Oh, you can't be feeling that. There's no physical reason for you to be feeling pain." Yeah, right. Tell it to my feet.

For Jarrett and dahlek,
 

I had three doctors in 1993-5 tell me there was nothing wrong with my feet. The skin color was good and I had a good pulse in both feet. One offered tranquilizers and a referral to a psychiatrist. None did a neurological screening.

I finally got a referral to a neurologist who gave it a name but no treatment and no hope. Naming it meant a lot to me and my wife. The pain was incredible and debilitating back then...from running and backpacking to hobbling in a month with all the fear and unknowns. At its worst, I had no ankle reflex in my right foot and only 25% in my left, really bad balance, and little proprioceptive feedback from my leg muscles. Five years of yoga really helped the reflexes, balance, and muscle sense.

Now we know that chronic pain IS in your head, but not like those arrogant and incompetent docs meant it back then. The issue is, what to do about it. I'm doing much better now with the program at http://neurotalk.psychcentral.com/sh...p?t=177&page=2 (items #18, 19, 20) but am still in pain, even though I walk or hike daily without a limp.

I'm lucky and know it. Reading postings like dahlek's breaks my heart.
With generalized autoimmune syndrome, steroids and drugs like methaltrexate (sp?) can only help to a degree before the side effects become life threatening. Good diet, fish oil and other supplements, and exercise through the pain might help and wouldn't hurt. I hope dahlek reads the linked program and gets some ideas that help.

Y'all have a great day with renewed hope and energy. We all care about each other here. If wished were cures, we'd all be feeling fine and be older, wiser, and happier for the PN experience.

If wished were cures, we'd all be feeling fine and be older, wiser, and happier for the PN experience.
**********

There's a mouthful! Before experiencing PN for myself I'd heard of it and heard of what the symptoms consisted of. But I never could quite wrap my head around just what it actually felt like. Nor what an affect it could have on one's life. I would gladly give back this life experience. :D

Pain scales.
 

[quote=jarrett622;109520] The rating scale still in use, 1-10 usually, is actually very effective for rating pain. Chronic pain, too, can range from 1-10, varying on different days.

Hi jarrett622

On reading your posting above I was just on the point of agreeing with your sentiments entirely when I realised you have (to my mind) contradicted yourself with the above quoted extract.
Whilst no one should ever judge a persons pain – and boy just like you have I had to put up with a lot of that – at the same time no pain should ever be gauged by using a so called pain scale. Your idea of 1-10 is almost certainly not mine because you may faint on my 9 or I may faint on your 7. Some folk here in the past have quoted the Mankoski pain scale http://shsskip.swan.ac.uk/Informatio...in%20Scale.htm which perhaps we could all embrace but I am not too happy with that idea. Many people will still exaggerate their pain while others will try to play theirs down.

I have tried until I am blue in the face to get both my GP and current neurologist (not to mention relatives!) to accept the level of pain in my feet but none want to understand and on one recent occasion my neuro told me to remember there were others worse than me. Now that really made me feel good.

Tony

Its good to see you posting here Tony. I hope you're doing well.

Regarding your quote above, in the book "Spontaneous Healing" ( http://www.amazon.com/Spontaneous-He...1151587&sr=1-1 ), Dr. Andrew Weil wrote something that was helpful to me and may help you. To paraphrase him, "Never accept negative statements from a physician or other health care provider." I'd include invalidating your experience as a negative statement from a physician. I write off negative doctors as ignorant and arrogant incompetents. Negativity and denial that anything was wrong with me and that my extreme pain was imaginary or neurotic was the primary reason I switched doctors so much the first few years of having PN.

Most American doctors are now aware of the existence of Peripheral Neuropathy because most have been sales-pitched to by Neurontin sales representatives. That's not a reassuring level of knowledge, but at least they usually don't totally dismiss the possibility that there can be pain in an area without apparent injury.

The "Newsweek" pain article that started this thread may be printed for the edification of arrogant and ignorant physicians. Though it is written for lay people, I learned new things about the nature of chronic pain from it as have other members of this forum. Maybe if you highlight relevant passages pertaining to chronic pain, or write the passages in large block letters on poster board, the physician gods you're dealing with will deign to spare a glance or two and actually learn something new from other than their accustomed, though limited, sources.

Take care.

This thread bit me
 

I can say that when reading this, I can relate at this time so very much. Dahlek and I are both battling a raging immune system. Mine was under control for awhile and now seems to be on crawling out of the net we've had it confined in over the last few years. I agree with Wings, sometimes the medicines we've used to control the immune system turn around and bite us. Mine is biting me right now. We tried to back off from some of it in order to help with the breaking bone situation and it made other problems appear. More nerve pain, more joint pain, swelling, etc.

And I found out at the doctor's appointment this week that my doctor actually did not believe me when I told him I was in unbearable pain with my back and legs. When the first xrays of the sacrum did not show any thing, he thought I was exaggerating the pain caused by the Rheumatoid Arthritis. And he told me it was probably a strain and to go home and use heat and it would be better in a couple of weeks. And a week later when I called and told him that I was no better that I was actually worse, he sent me 15 pain pills. All of you here know that I do not take pain pills. I took these.

At the end of that week, I couldn't get out of the bed. Not because of the pills, but because my back was broken. I saw this same doctor on Monday. By that time I had been in the hospital since Sat. morning. He asked me what I was doing in the hospital. I told him because that is where the ambulance brought me because I couldn't get out of my bed. I then had to tell him that the emergency room doctor had diagnosed me with a stress fracture in my sacrum. He acted like it couldn't possibly be and I told him to go see the CT scan they did when the ambulance brought me in. He said that his xrays hadn't found it and I told him they were wrong. He said at that point "I'll get down to the bottom of this!". Then the next morning he came in and said, you have a major stress fracture in the sacrum. You all know the rest of the story.

When I saw him for the follow up after release from the hospital. He apologized to me and told me that he honestly didn't believe me when I told him I was in pain. He said, "You were so calm. I didn't think there could possibly be significant pain. But now I wonder how you were even walking." I told him that when I say I'm in Pain, Believe Me I'm in Pain!! I don't scream, I don't cry. But I don't lie either. Our relationship is new, I have only had him since Nov. But I think he will believe me when I say I'm in pain the next time.

But is this a sign of the time? Doctor's think we are lying or exaggerating? It shouldn't have to be like this. I had to be carried to the hospital in an ambulance, tests were done, other doctors consulted and I was suffering extreme pain. All of this before one doctor believed there was significant pain.

Billye

Billye,

But the doctor followed through, showed curiosity, a commitment to you and to personal excellence, and apologized. I think he's a keeper.

Fractures hurt incredibly. I hope you're resting comfortably now.

David

Hi jarrett622

On reading your posting above I was just on the point of agreeing with your sentiments entirely when I realised you have (to my mind) contradicted yourself with the above quoted extract.
Whilst no one should ever judge a persons pain – and boy just like you have I had to put up with a lot of that – at the same time no pain should ever be gauged by using a so called pain scale. Your idea of 1-10 is almost certainly not mine because you may faint on my 9 or I may faint on your 7. Some folk here in the past have quoted the Mankoski pain scale http://shsskip.swan.ac.uk/Informatio...in%20Scale.htm which perhaps we could all embrace but I am not too happy with that idea. Many people will still exaggerate their pain while others will try to play theirs down.

I have tried until I am blue in the face to get both my GP and current neurologist (not to mention relatives!) to accept the level of pain in my feet but none want to understand and on one recent occasion my neuro told me to remember there were others worse than me. Now that really made me feel good.

Tony[/QUOTE]

That's what I said. I didn't contradict myself at all. Everyones pain differers. And that's what I said. The scale is still a valid tool in that I may rate a pain at 6 and you may rate it at 2. What this tells the doctor is what we, as individuals, are feeling at that moment. This tells him what kind of treatment is needed and at what level.

I'm confused. I think you have lumped my post in with the person that responded to me. I don't see a contradiction in my post. Here's my post in it's entirety:

Part of the problem in defining pain is that we all feel pain differently. A type or level of pain that might drive me crazy may be barely felt by you. In nursing school they couldn't pound it in hard enough: Never ever judge a person's pain. If they say they're in pain, they are. As to how bad that pain is, falls under what I stated above; we all feel pain differently. The rating scale still in use, 1-10 usually, is actually very effective for rating pain. Chronic pain, too, can range from 1-10, varying on different days. What seems to befuddle doctors is when we have a pain that they can't point to a specific injury as a cause. For someone like me where they haven't found an underlying illness I'm sure they wonder how much of it is just in my head. I'd like to, for just one of my worse nights, let them experience the pain and discomfort I deal with. *Then* they would 'get' it. I hate it when the doctor acts like I'm simply imagining the pain. "Oh, you can't be feeling that. There's no physical reason for you to be feeling pain." Yeah, right. Tell it to my feet.

Sorry! - I still think “pain scales” are utterly useless. I have had PN for 15 years now and about ten years ago I reckoned my pain level at about 8 or 9. Were that to have been true I cannot imagine where I would be now – 120?

I really am supportive of your position and agree with all you say with this one exception. If I want my doctor or neuro or wife or neighbour to know how much pain I am in (especially when I look ok in every other way) I just tell them it is excruciating but life has to go on for as long as I can stand it. To tell them I gauge my pain as 9 ½ out of 10 means nothing to them or anyone else because if it gets worse next week and again the week after what rating do I tell them it is then?. This is how I see it but please accept that I respect your view whilst disagreeing with it.

David – thank you for your good wishes but I fear I am doing far from well. I must add that if I showed any relevant papers extracted from the internet to either my neuro or my GP they would quickly laugh and show me the door. They think I spend my life researching the net for a cure. I can’t change them (or their opinions) any more because the notes are handed from one to the other and I will find myself in the same situation with a new doc. I am indeed resigned to this disease now and rely on sleep, reading, my computer and TV to help me through the day. My wife believes she is the sickest of the two of us and after 44 years who am I to disagree – I only live with her?!!! That is however another problem altogether.

Leaving my troubles to one side David, I am happy to see that your pain still allows you your daily walks. Long may it be so.

I would just like to add that I feel humbled by Billye and others who are suffering multiple health problems. They are a wonderful example to us more fortunate ones especially when one considers that most of them also have very little family back up or domestic help. They are permanently in my thoughts and I read their postings with the constant hope of an improvement in their various troubles.

Tony

doctor a keeper
 

Yes David, I think he is a keeper. But I'm very afraid he will burn himself out. He is Russian trained and struggles to understand things in English. He goes everywhere he goes at high speed. You should see him when he's in the office and hospital. He is one I will keep, but he has to learn to trust me. I think he will now.

Tony, I thank you for your comments. :hug:

Billye

I read some studies when I was practicing that showed that the 1-10 pain scales were actually fairly good indicators. Obviously, no one can feel what another feels, but when patients rate their pain on a 1-10 scale, it correlates fairly well with functional levels, and it seems to be fairly consistant from day to day within one patient's reporting. I used to tell my patients to consider that 10 was pain so bad they would have to go to the emergency room. Now that I am a pain "victim", I feel like I can rate my pain 1-10 extremely consistantly -- for me-- of course, I have no idea how it compares to someone else. I guess that doesn't really matter -- what matters is that when it is bad enough -- for me --, I need pain meds! And when my pain is a 7, I quit wanting to talk to people, and when it is 8, I just want to lie still and think about breathing, and when it is 9, I start wishing I could go to heaven. When it is 3, I feel like I can take on the world! And if it stays at 7 or above very long, I want better pain meds!!!! I know exactly what each level feels like for me!

Honestly, I can't imagine what the doctors are thinking. Do they really think that someone wakes up in the morning and says to themselves, "Gee, I think I'll go to the doctor today and tell him that I am having a lot of pain even when I am not. After all, I'd just love to get some more of those drugs that make me constipated, nauseous, and dull-minded, give me a dry mouth and ruin my short term memory. And I'm just crazy about the way I get patronized and treated like I am some whining child. Yesiree, I think that's what I'll do today for fun!"