Friday, June 01, 2012

Pain Awareness Month—Early Impact of Chronic Pain

By Denise Coleman Tuesday, September 14, 2010

 September is Pain Awareness Month continues and there are so many excellent programs being held around the country and online to help educate people about the impact pain can have on a person’s life and to spread awareness about pain in general.  For further information about these programs and how you can participate throughout the year go to www.painfoundation.org

 

In my last, very long, posting I told you about how pain has changed my life and the challenges I faced in my efforts to succeed.  Today I want to tell you, in a much shorter posting, about how pain affected my self-confidence and emotions from a very young age.  Did you ever ask yourself if maybe the pain you feel isn’t as bad as you think?  Could you be exaggerating it for attention?  Or perhaps you are just crazy and it is all in your head.

 

I started asking myself these questions by the time I was 14.  And continued to ask them until I finally realized that it didn’t matter who else believed me or what anyone else said, my pain is real and getting worse.  I don’t know exactly when I came to that conclusion, probably in my late 30’s or early 40’s, after several spinal surgeries, years of pain medications, a variety of treatments from injections into my spin and physical therapy to spinal manipulation under anesthesia. Yet, I was still in terrible pain and in need of pain medication to manage it.  I began to collect copies of MRI’s, CAT scans, and all the other tests I had, and they showed the damage in the spine. Obviously there was something wrong, my pain was real and I wasn’t crazy.

 

Every time a doctor or other medical professional would question either the extent of my pain or if I had any pain at all, I would hurt, cry, and try to convince myself it wasn’t bad so I wouldn’t have to bother my parents or cost them anymore money—money I knew they didn’t have and that they needed to support the whole family. I had four siblings and I knew they were tired of hearing that I hurt, so I would tell myself I could just ignore it if it’s not that bad.  Right?  Doesn’t that sound logical?

 

I know now that a 14 or 15 year old can hide terrible pain from her parents and siblings about as much as she can convince people she is the Queen of England.  I know that at times my parents would get frustrated with me, with the doctors, and the whole process of going to doctors and getting nowhere.  Why not, I was frustrated, too, but I began to feel guilty on top of everything else.  Not only did I worry that I was crazy and making up pain, but now I felt guilty about all the trouble and money I was costing my parents. The only place I had any success was in school and that’s where I turned my attention. I knew early on I wanted to go to college, and then either to law school or become a social worker, and I never doubted I’d do it.  I just never thought it would take me as long as it did.

9/14/10 8:24pm

Hi, I read your post and I have had my pain since I was about 13 years old. I would go home from school for unexplained pain and the doctor had to write notes to the school to excuse me because I missed so much school. I was finally diagnosed with fibromyalgia when I was 20 years old. It was very frustrating not knowing why I hurt so bad sometimes. I was questioning if it was all in my head like all the doctors were saying to me. Well once I was diagnosed, everyone said "oh that makes sense". I also have a congenital fusion in my spine and it has continually got worse... The last spine doctor I went to said "It shouldn't hurt because you were born with it"... Well it hurts and I need to find something to help at least calm the pain. I am now 28 years old and am hoping that a doctor will now take me seriously because before it was always "no you couldn't have that much pain, you are too young".

9/14/10 9:09pm

I am sorry that you have had to live with pain from such a young age.  It takes over your life after a while and you forget what life was like before pain.  Do you see a pain specialist?  there aren't near enough medical professionals that specialize in pain, and even then it depends on where they are taught and what approach they take, but I hope you find a doctor that understands the physiology of pain as well as the impact it can have on all the other aspects of one's life.

We were the same age when pain entered our lives, and I am now 59 years old and live every day with pain, although it is managed so much better since I had the intrathecal  pump implanted.  It won't work for everyone and every kind of pain, but if  you want more information about it, you should go to their website, www.medtronics.com and read more about it.

I wish you all the best,

Denise

9/17/10 11:14am

Hi, Denise!

Thank you for your article. I am sorry for the difficulties you had with inept doctors, since you were so very young. I have not had pain since I was a child, only since I was 39. But it seems like forever sometimes. The things in your article I could relate to the most were comments from doctors like, "This physical problem should not be causing you that much pain." Well, doctor, it is causing this much pain. Another one about women and our stress levels...Also, that when a doctor senses a "lack of clarity" in terms of what is going wrong with us, they either don't want to deal with us, blame the pain on us somehow, or proclaim that is can't be there, can't be that bad, or is caused solely by psychiatric disorders. Well, if I do have a psychiatric disorder, it is BECAUSE of the pain I am in, not the other way around! So, thank you again for your article. While I am sorry you have had to go through all of this, by sharing it you are encouraging others that they are not alone, that they need to keep seeking the best treatments, and that just because someone says the pain is all in their head does not mean that it really is.

 

I still feel like I'm fighting battles on all fronts because no one is really sure what is causing my pain now. Yes, I've had a fusion and another surgery, but since they can't "see" the pain on a CT scan or Xray, they just don't know what to do about that. Thus, I have to trust people to take me at my word that the pain is severe, gets completely out of control at times, and becomes unbearable. Sigh... I know you know what I mean.

 

Thanks again,

"gimpy"

9/17/10 7:45pm

Thank you for commenting on my article. It is good to know that there are people out there that can relate to what I have gone through and I am not all alone, on the other hand, I hate that you, or anyone else, has had to experience this level of pain.  No matter how much my parents, family, and friends tried to empathize there was only a certain amount they could relate to because they have never had chronic pain at this level.  I think we all need to speak out about our experiences and our pain because it breaks the barriers of isolation and fear that builds up when we are alone, or think we are alone,with our pain. 

 

Since I had to stop working I have lost contact with so many people that I cared for a great deal, a natural process I imagine, and I began to feel more and more alone, isolated, fearful and depressed.  Getting involved in volunteer organizations, such as the American Pain Foundation Action Network, and other organizations, both health related and other types of organizations, has helped me feel connected and productive once again. I cannot encourage you enough to help yourself by helping others in pain. Check out the American Pain Foundation at www.painfoundation.org.  

 

I am sorry you had to go through so many similar experiences with doctors who didn't believe that you were feeling so much pain or didn't know how to treat you.  I hope you will go back and read some of my past postings, I am sure you will find much more in them that you can relate to. You will see that I reached a point at which I knew I had to speak out and become an advocate for myself and for others.  Do you have a diagnosis?  Would you mind sharing it with me?  I find it amazing that doctors and other medical professionals can give up even trying to diagnose you, but will operate and tell you what amount of pain they think you should have, or as you know, some will even tell you it isn't real, you just need to get rid of stress in your life.  I don't know how much stress my doctor thought I had at the age of 13, but I can certainly credit him and his colleagues with adding much more by the time I was 20.

I hope you will read some of my previous posts and subscribe so you will be notified when I post new ones.  We must advocate for access to quality care for everyone living with pain, and this is one way I will continue to speak out.  As the month continues I will write about other ways people can participate in the efforts of the volunteers and staff of the American Pain Foundation. Thanks for reading my posting and for offering your terrific comments. Denise

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By Denise Coleman— Last Modified: 10/25/10, First Published: 09/14/10