Coping as Individuals

By Denise Coleman Sunday, October 04, 2009

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The National Center for Health Statistics reports that over 76 million people live with pain. I was reminded recently that we must not just think of this huge number but of the individuals that comprise it. I met a woman who is living with disabling pain, trying to cope and support herself, even though the Social Security Administration has informed her that she does not qualify for disability insurance; she isn’t in enough pain. We spoke for a few minutes and I was reminded that each of us is experiencing pain in a different way, facing life’s barriers and coping with the impact pain can have on our work, relationships, finances, mobility, and emotions as best we can, while few around us can even begin to realize the challenges we face.

The first time I heard the number of people reported to be living in pain I was amazed, and I wondered how these people were all coping. Were they working or on disability? Were they seeing pain specialists? Was their pain being effectively treated? Have they ever had the experience in which a medical professional doubted their pain, or the intensity of their pain, and accused them of being a drug seeker? I wished I could know more about the individuals who make up the 76 million people the Center refers to, but obviously I can’t.

A few weeks after learning about this huge number of people living with pain, I attended a conference for volunteers in the Power Over Pain Action Network (POPAN), a grassroots project of the American Pain Foundation (APF). I had recently been accepted as a volunteer spokesperson by the Foundation and this was the first time I was going to meet other volunteers and staff of POPAN; I looked forward to learning more about the educational and advocacy work I would be doing. I knew that most of the volunteers were people living with pain and I was interested to see how they were all coping on a day-to-day basis. I’ve lived with pain for over 45 years and while I mostly cope pretty well, there are still some days on which I feel as though I am not coping at all. I volunteered for this work because I believe that others can benefit from the experiences I have had in relation to my chronic pain over the years, both good and bad.

What I didn’t stop and think about is that since each of us is very different in so many ways we will naturally react to our pain differently, and often uniquely. At the conference I met people who have lived with pain for many years and deal with it in ways I would never have thought of. Some feel comfortable saying they must lie down in the middle of a seminar, while others would rather bleed from their very pores than ‘make a scene’ and lay down on the floor. Others are taking strong pain medication, which is the only treatment that gives them relief, while others have doctors who refuse to accept their pain is that bad and won’t prescribe medication. And still others have nerve stimulators, morphine pumps, and other more recent methods for treating pain; methods that some doctors don’t even know can be used for this. The lack of knowledge by some medical professionals about the physiology of pain and the impact it can have on a person’s life is appalling and the more I heard the more determined I became to help bring about change.

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Comments (18) | Add comment

Anniemetalgirl

10/ 4/09 4:58pm

Denise,

Thank you for all you do for the cause of Chronic Pain. I capitalize it because of its importance. I belong to the American Pain Foundation and advocate as I can, sending emails to our government officials. I have presented my request to volunteer and have never been contacted. I advocate unofficially at several pain sites and moderate a large pain group on yahoo.

There can never be too much done to get our message out to the powers that be.

Huggles,

Annie

cindi

10/ 5/09 12:30pm

hi! i also requested ways to volunteer..posters, ways i can get my community involved etc. from the APF, but was not contacted either, i would have gladly , "walked " (oh the pain:) around town to put up posters, or other ways, i was able to help! wish someone would have contacted me....may i ask what pain group you are on w/ yahoo?..keep up the good fight!....cindi

Denise Coleman

10/ 8/09 12:46pm

Hi Annie,

I am happy to hear you are doing what you can to get the word out about chronic pain, as you say it is an important task that must be done. I am sorry that you have not heard back from the American Pain Foundation, I have fortunately had a wonderful experience with them. Have you taken the Advocacy Survey available on the APF website? This is part of the process of becoming a Power Over Pain Action Network (POPAN) volunteer, and I believe it is how a contact would be generated, but I am going to check.

I have been a POPAN volunteer since last April and have found it to be very interesting and fulfilling. So far I have written to federal legislators in support of the National Pain Care Policy Act, sent written testimony to the FDA regarding policies they were considering, given a presentation at a conference for pain patients, been interviewed by two reporters, been a guest on a web based talk show, www.letstalkpain.org/talkshow, and have recruited a volunteer to work with me. I also attended the national conference in Minneapolis last June, and had the honor of meeting many dedicated volunteers and staff. I am currently working on putting together an educational program for pain patients, writing letters to editors of newspapers, and setting up interviews with federal representatives and directors of pain clinics.

This may sound like a lot but I want to stress that it has taken place over several months and much of it is scheduling for future activities, plus I couldn't do it without the help of a volunteer. My point is there is so much to do and whatever each of us does adds up to make a difference, and together we already have made a difference.

Several members of POPAN gave personal testimony at two different FDA hearings and feel confident that there words and experiences made a difference in how the committee voted on at least one issue, making it possible for people in pain to continue getting prescriptions for certain medications that are the most effective for chronic pain.

I hope you will continue working on behalf of people living with pain and helping to spread the word about the impact chronic pain has on over 70 million lives in this country. I am going to speak with my contact at the Foundation and have someone contact you about becoming a volunteer. It may take a little while because I know she just started a two week vacation.

Thanks from one of the 70+ million.

Denise

Denise Coleman

10/ 8/09 12:54pm

Hi,

I am a volunteer with the Power Over Pain Action Network (POPAN), a grassroots program of the American Pain Foundation. I am very sorry you have not heard back from APF, and I am surprised as well since my experience with the staff of the Foundation has been wonderful. I will look into what happened, but as I mentioned in my reply to Annie the staff member that is my contact at the APF just began a two week, well deserved, vacation, so you will not hear back until she returns and reads her email.

Did you fill out the Advocacy Survey on the APF website. My understanding is that this generates contact from a staff member, but if you wrote a letter you should have received some kind of response. I cannot give you any explanation but will try to find out what happened.

We definitely need as many people as possible helping to inform others about the impact chronic pain has on the lives of those living with it, as well as to advocate for laws and policies that will benefit people in pain.

Please let me know if you hear from anyone at the APF in the next 2 or 3 weeks. I want to make sure you remain interested and have the support and resources necessary to make a difference.

Thank you for your interest and for contacting me. Together we can conquer pain!

Denise

Anniemetalgirl

10/ 9/09 6:38pm

Thank you Denise. I understand everyone is busy and did not intend for this to sound like a complaint. I look forward to hearing from whoever can help me.

Huggles,

Annie

cindi

10/14/09 3:07pm

...thank you, denise, i DO so want to do as much as i possibly can!!..cindi

cindi

10/14/09 3:17pm

hi annie! your post did NOT sound as a complaint, but as a person who is very interested in helping the 70+ million ( a staggering number, is it not??!!) people that are in pain, i , myself commend you for wanting to help in any way you can!!...we , so need more people that are interested and are able to do what they can...so I thank you, for your interest...even tho i am just a peon,:), trying to do what i can possibly do!..keep up the good fight!...cindi...

Anonymous

10/16/09 1:11am

When is enough enough? Why put the person through a lot of pain? Wouldn't they rather go be with God where there is no suffereing anymore?

Anniemetalgirl

10/16/09 1:19am

Thank you Cindi

Annie

Michael W Comer

10/ 4/09 8:34pm

Well figured I would drop you aline and tell you about my pain. Up to 1995 I was never in pain never took any form of mediciane. Then the day of Oct. 11 1995, I was at work at a factory, My job that day was to replace a chemical vent line with a new one. I started cutting the old one out and my partner told me that I had a liquid dripping on my arm.Note it was a vent line for vapors and not liquid, but the tank over filled and ended up in the line. I went right away and washed it off then 30 minutes later was lunch when we came back from lunch my forearm had turned black and blue. I was taken to medical they could not do anything with it so sent me to a company doctor. He looked at it and said he had never seen anything like it and for me to follow up with him in 6 months. About a week later it started to blister up, blisters the size of 50 cent pieces. Then started peeling. I went back to the doctor he said mostley for me to live with it. I never missed a day of work, every evening I came home poured hydroproxide on it and cleaned it everyday. Then about a few months later it was healing up some but the burning and sharp pain in my arm and wrist was unbearable. Went back to the company doctor he didnt know what was wrong with it, so gave me tylenol 3 with codine once a day and pretty much said live with it. I did for a few months but the cold weather at this time took a toal on my arm. So I finally went to my family doctor. He said he thought I had RSD which I had no idea what he was talking about. So a few weeks later I followed up with the company doctor told him what my family doctor had said he said could be. I asked him if he would release me from his care and let my doctor be the workers comp doctor he siad NO!! But beings that my family doctor seem to know more that he did I needed to go see him. So I did, he set me up with a hand and arm surgeon for a second look. This doctor also comfirmed that I had RSD. Then my doctor sent me for a MRI along with nerve doctor. They also confirmed that my doctor was right and was treating it the way they would. This story line goes on and has alot of things that a person would think would never go on in the USA. I never received a penny from anyone for the accident workers comp wont pay for nothing. and I have over 30k of medical bills that hasent been paid plus I have spent well over 40k of my own money for meds and doctor visits. The pain is a 24/7 deal and now I have shoulder, back and every joint in my body hurts. So if anyone has any questions or wants to know more about my life and the pain i endure everyday please fell free to contact me. I have not reached out to anyone but my family to talk to and I dont talk to them much because I feel as if I am a broken record so I just bottle it all up inside and keep it to myself. I have thought of ending my life a few times but I have a daughter and cant do that to her, but the pain is getting unbearable. The doctor that treated me from the onset of this, is now no longer around. I am going to another doctor now and I feel as if he thinks I am just seeking pain pills, but like I tell him take away the pain and he can have all the pills back. He has dropped me to half of the pain pills I was on and tells me to make them last a month. So when I do run out I turn to over the counter meds and alchol to ease the pain. Some people tell me to go on the streets and buy the pills, but I am not going to do that I just want my docotor to understand the pain I am in.I ask him questions about RSD and he tells me that he does not know anything about it, so tell me how can he treat me for something he does not know. The only reason I go to him and not someone else is because my wife works in his practice and he dosent charge me. I have no insurance and I have to pay for all my meds I get. I am tired of the pain I just wish I could have one day that I am pain free and can do things I use to do with my daughter. So please reply to me anyone and give me someone to talk to I am at my wits end here. I want to thank anyone that takes the time to read this. I know it sounds messed up and it is Mike hanging in there in West Virginia!!

cindi

10/ 8/09 10:19am

hi mike, damn another person, being treated as many of us have...it is so sad that you have to live in pan and they will not give you an aduquate amount of pain meds to keep you at the very least comfortable!!! i have seen "those" drs. that think you are drug seeking...unbelievable that people on the streets can get the pain meds that WE so desperately need!! i have also been at that "dark place" where i wrote a "note" to my family, because the pain is just unbearable...talk to sommeone, mike, a counselor, or someone on here, or ME...but please get these thoughts out of your head, your daughter needs you!!....i don't know what RDA (?) is? if you feel like writing to me, let me know what it is...obviously very painful...sorry about the money siituation, also, man i cannot believe they will not give you workmans comp or SOMETHNG!! isn't there somewhere you can go to find out more about this??...hang in there!! ( i know, easier said than done)...i have had chronic back pain for 3+ years...been to soooooo many drs, pain clinics, specialists and STILL they cannot find out what is wrong!!...talk to someone on here, that is what we are here for!!!...take good care, cindi

Denise Coleman

10/ 8/09 12:25pm

Dear Mike,

I am sorry to hear of your long and painful journey with RSD. It is a terrible disease and often is difficult to diagnose and treat, which is why I think you need to find a specialist in RSD for future treatment. From what I understand there is no cure but many people go into remission with extensive therapy for the nerves. I would recommend, as I always do, that you go online and/or to the library and find out as much as you can about the disease; I think it helps to understand what is going on in your body. In addition, there is an RSDS Association that has chapters all around the country. I don't know where you live but go to the main website and see if you can connect that way. I am also going to ask a woman I know who has suffered with terrible RSD and is now undergoing treatment and starting to see the results, if she can give me any advice as to how find resources for both treatment and the support you need. I know she is involved with the RSD Association and attends a support group through that organization, so she can at least advise you as to how to best connect with them.

Have you spoken to an attorney about worker's compensation? I believe that RSD is often caused by an injury or infection in one part of your body and as it progresses your nerves throughout your body start to send inappropriate messages to your brain and you can suffer terrible, disabling pain all over. If this is a result of the injury you suffered at work I would recommend you find a compensation specialist who does not charge you any money until and unless they win your case; obviously they won't take your case unless they feel you have a good chance of winning so really all you have to lose is the time it will take to meet with them. Same for disability. Are you receiving short or long term disability? It sounds as if you should apply for Social Security Disability if you are unable to work, and I know there are law firms that operate the same way as compensation lawyers so it doesn't cost you any money unless you win the case.

I feel the need to respond to the inadequate treatment you are receiving for your pain. This is a problem we are facing all over, and there are efforts by state legislatures and federal agencies, such as the FDA, to limit or ban the use of opoiod medications totally. The reason behind these efforts, the wide misuse and abuse of prescription medications, may be laudable but they should not be made at such a huge cost to people living with pain. One problem is that there is not enough known about the physiology and impact of pain by medical professionals and even less public awareness about pain and how it can best be treated.

The American Pain Foundation, www.painfoundation.org is working hard to increase the general understanding of pain and is providing testimony and letters advocating for legislation and policies that will benefit those in pain. I urge you to check out their website. I am a volunteer spokesperson for The Power Over Pain Action Network, www.popan.org which is a grassroots program of the Pain Foundation and we need everyone's assistance in getting the word out that together we can conquer pain.

I hope you will soon find proper medical attention and treatment for your RSD and one day your pain will be brought to a manageable level so you are able to cope better.

My best wishes.

Denise

Denise Coleman

10/ 8/09 1:05pm

Dear Cindi,

It's great you wrote to support Mike, so many people in pain are alone and lonely and need to know that others have gone through similar experiences. As I have stated in several Share Posts, pain is the #1 reason why people seek medical attention and it is the single greatest reason why people apply for disability, and yet it is one of the medical issues about which the least is known. Most medical schools still do not teach about the physiology or impact of pain and teach it only as a symptom of another disease. No wonder doctors don't know how to treat chronic pain!

Many of us have gone through the experience of being doubted about the level of our pain, been treated as drug seekers, which is both frustrating and humiliating, and have had pharmacists question our need for the pain medication we are prescribed. One pharmacist told me I should get my methadone at a clinic, he wouldn't support my habit. I spent a long time explaining that methadone is more than a medication to help people break a habit, it is often an effective pain medication, but there was nothing going to convince this man that I was a legitimate patient, and this was in Manhattan. I finally asked my doctor to give me a different, accessible medication even though it wasn't as effective.

I agree that we should never give up hope and I sincerely urge Mike, and anyone else feeling so hopeless and alone, to contact someone and seek appropriate help. Most illnesses have an organization dedicated to supporting people with that illness and I think that is a good place to start, if only to be referred for other services. And find someone to talk to who can understand what impact pain can have on your life, not all doctors and therapists understand, so be selective. And keep writing your Share Posts and reading others, I know I find great support in reading about what others are experiencing and how they are managing to cope.

Best wishes,

Denise

Anonymous

10/14/09 1:31pm

Cindi: Thanks for the respond. I am in to my third week of my monthley visit to my doc and already out of pain meds. The weather has alot to do with the pain, and it has been cold and rainy here. Seems as if none of my joints want to work right when its like this. Plus the all the time pain in my arm and wrist where I have RSD. I am hanging in there, try to get out of the house when I feel like it. One thing I have never done is buy pills off the street or sale any of mine, but you are right seems the dealers have more than we do that need them. I am now taking over the counter pain meds and doing something else I know I should not be doing which is drinking to ease the pain. I told the doc the last time I was there that if he could or would not provide me the meds I needed I would just start drinking with the ones he did give me. What did he do just sit there and look at me. Like I said I am limited on who I can see right now because of the cost of a doc's visit. The one I am seeing my wife works for so it is free to the family to be seen him. But I really am glad that you responded to my message. I have my good days and bad days I guess like everyone else. Thanks again and hope you also find relief in your pain. Lets stay in touch and help one another Mike

Anonymous

10/14/09 1:46pm

Thanks for the respond and the information. I will check into those websites. I did have a lawyer working on my case, They offered me 6,000.00 yea alot huh?? I said no. So the case went on I didnt hear from my lawyer for awhile and everytime I called his office he was out or busy. So I finally got ahold of him he sent me papers that I had never seen before. And pretty much said the case was closed. So where and what do I do now. It has been 14 years since the accident. I tried to contact workers comp . They wont talk to me, I never signed anthing saying I wanted to close my case with them. But one thing against me is the accident happened in Virginia. It was a factory that makes cig filter materials. So pretty much I feel as if I got the shaft on this one. But if you or anyone knows what I can do now PLEASE let me know. And I am tring to hang in there, take one day at a time. And thanks for the website info. And keep up the good work Mike

cindi

10/14/09 3:01pm

hi denise, have been meaning to write..but have had some very, very bad pain days..weeks after my RFA..stillwondering if it is going to work???..anyway, i was astonished that 76 MILLION people are in pain 24/7 , in this country..uh, is that not what they consider an academic??!!..this is just so unbelievableand apallin as you said about the medical field not having the KNOWLEDCE nor the COMPASSIION to treat these 76 million people!!..i mean, i know that i have tried things that i am physically able to do..sign petitions, write to my state senator, etc..but as i said in my other post, i wanted to do so much more, i asked for the "tool kit" from the APS, but was never contacted, i was and still am very disappointed..i could have put up posters, around town, i could have talked to our local paper, (but i needed facts!), i could have talked to my priest about , maybe, puting in our weekly newsletter (again, i needed facts!)..these things i COULD have done, because i am physically able to do them...altho the walking around town , probably would have made my pain level go to a place i hate being,:) but i WOULD have done it, because it is for such a good cause...an unaware cause, but nevertheless, maybe i could have opened some people's eyes to this very worthy cause!

what happened at your pharmacist is totally unacceptable!!! but, i, too, have had this happen to me..so i know how you feel, what was so embarrassing also, was the pharmicist didn't even take me aside and tell me this, he spoke right in front of all the people that were in the pharmacy..i could not believe it, i walked out of there crying, because i live in a small town (1200 pop.) and everyone knows everyone, so it was quite humiliating, to say the least! we should not have to go thru this!! i say it again and again, but it is hard enough when you see a dr. that thinks you are "drugseeking", and then you go to pick up the medication and have to be humiliated all over again..i a just so darn ( i will be nice :) tired of being treated as a "nothing"....

your article, again, was very well written and very interesting, i am proud to "know" you on here, for all that you do...even tho, you have to be in such pain, and i thank you, again, for what you do and for keeping us informed!!..have a wonderful week, denise, and i wish you a low pain level week and weekend...cindi

cindi

10/14/09 4:01pm

hi mike! you are very welcome for my response, ..i so wish i could do more! as i said before, you are obviously not getting the right amount or the correct medication, you so terribly deserve and need! ..i, also have the "very bad pain days", w/ the weather, i KNOW when it is going to rain or snow..we should , get into the meteorologist business..

the over the counter medications are probably not doing much for your pain, ..and i know that this is why you are probably drinking ( or have thought of it)..but, mike. PLEASE, be careful with this..i am not trying to preach to you!..but, i have been there, also..embarrassing, but i am not going to lie to you, i am sure others have "tried" to rid thier pain w/ drinking..but, mike, truthfully has it worked?? and you certainly do not want to get sick..or worse. ..sorry, your dr. (as many) does not understand your pain and that you told him , that you are resorting to drinking, because of the pain...these drs. are just so unbelievablly ignorant!...please, think about this, mike, and i will now get off the subject :)

i do not know too much about the money situation and what you can do...my chronic back pain was caused by a car hitting me, while i was walking across the street (sorry, if i told you this before and am repeating myself;)..so i have an attorney, to take care of the "money situation" for me, but because of being hit, i can no longer work, which really is hurting my family financially, we have 4 children and at the moment, 3 of them are attending college, so , yes, it is very hard...i feel terrible that i cannoot contribute financially with my family, but luckily they all understand! denise gave you some good advice financially and i would look into as many possibilities as you can! (she is one pretty smart cookie :)

mike, write to me ANY time you want to, i have a big ol' shoulder...and i will try and help with anything i can..even if you just want to vent, cry ( yes, men cry), laugh or scream about your pain, your frustration or anything you want!:)...

...especially when you go into "that dark place", ...you NEED to talk, and as i have said before, if not to me, please to someone!!..i will be here if you need me...hoping you are feeling as well as you possibly can...cindi

Denise Coleman

10/17/09 2:27pm

Hi Cindi,

My Post seems to have generated a lot of discussion, which is great. It helps sometimes to talk to others experiencing the same things, doesn't it?

I just want to clarify one thing. The National Center for Medical Statistics reports that 76 million people report they experience pain. It doesn't specify that they are in pain 24/7, or for any specific amount of time, but they report they are in pain for some period, meaning not from an injury that heals right away. It is vague, but I do believe the message is clear, especially when you consider the fact that the #1 reason why people seek medical attention is for pain!

Whatever the exact number of people living with constant pain, it is enough to rationalize teaching medical professionals about pain, to fund research on pain, and to increase the awareness of everyone about the impact pain has on the lives of those who live with it.

Best to you and all who have replied to this Share Post. We have to keep speaking out for positive policies and laws that will ensure that everyone in pain has access to the most effective treatments.

Denise

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