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Old 10-06-2007, 11:45 PM   #1
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SteelTownPain07 HB User
Just looking for some support

Hey everyone,

I have spent some time reading through the boards and I am amazed at how people take the time to talk to, and support, one another. I am a 27 year old male that has been dealing with severe abdominal pain for the last 21 months. Throughout that timespan I have been hopeful for a successful diagnosis and cure; however, after every test imaginable my doctors have been unable to find any "concrete" cause of the pain.

I was diagnosed with Adrenal Insufficiency this past April, and they are thinking that the abdominal pain that plagues me is the result of permanent nerve damage resulting from the Adrenal Insufficiency going undiagnosed for so long. My doctors have informed me that there is nothing that can be done to reverse, or cure, the nerve damage and that I must accept the fact that this is something I will be forced to live with.

I am very fortunate that I have a tremendous doctor that is a truly compassionate human being. He truly cares about my quality of life, and has taken every measure to ensure that I am as comfortable as possible. I went through two other doctors that labeled me as a narcotic seeker and "pill junkie"....and were content to watch me suffer in agony. I thank God that I am blessed to have found a doctor that cares about his patients, and is willing to perscribe the medication necessary to allow me to live as normally as possible.

I am still trying to accept the fact that this is something that is going to be a part of my life. Before, it was the hope of a diagnosis and cure that allowed me to carry on and deal with the pain....now I am in the process of changing my perspective on my condition and could really benefit from talking to others that are going through the same thing. People that don't have to deal with chronic pain don't understand what it is like....and how physically and mentally draining it can be....so I am really hoping to find the understanding and dialogue here that has eluded me thus far in "reality".

Thank you for taking the time to read this....and I look forward to hearing from someone.

Best,

Aaron

 
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Old 10-07-2007, 05:43 AM   #2
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Join Date: Dec 2006
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Posts: 155
whitfield HB User
Re: Just looking for some support

Hi Aaron--Your story interested me as my condition also is abdominal pain (pancreatitus)--I wonder what medication your dr gives you for pain and what is your long term prognosis? I currently am on the duragesic patch 100Mcg changed every 3 days with percocet for BT(breakthrough) pain. I also have a compassionate dr and have not had any problem obtaining relief--many others have quite a difficult time. I also am able to get my meds for 90 days at a time and do not have to go to a "pain management" doctor--again, I am lucky so far. I do not work as I also have Multiple Sclerosis, but I can drive short distances and am self sufficient. What is your story? Take care--Roger

 
Old 10-07-2007, 06:11 AM   #3
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Join Date: Jun 2006
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ozzybug HB Userozzybug HB Userozzybug HB Userozzybug HB User
Re: Just looking for some support

Aaron-
Welcome to the boards friend. As always, I'm really sorry there is another person who needs to be here because of pain issues, but you have come to the right place.

Oh, how many of us here have felt what you are feeling right now. Trying to come to terms with the fact that pain will more than likely be a part of our lives for good. Then, dealing with others who just don't understand adding to that load? You know, making comments like, "just work through the pain", or "Hey, once you get up and start moving around some, you will feel better." Those are the people who I think are trying to help, but just don't understand. BUT, then you have to deal with mean, hurtful comments from others about the fact that you take medications on a daily basis. I won't even go into those comments because it gets me so riled up. Those are the people you wish could live just one day with your pain so they would see what you go through. Maybe then they would shut the "you-know-what" up about our need for meds, ya know?

Living with long term, chronic pain takes a toll on us in so many ways. It's a wonder we are able to function, but you know what- every one of us have found a way to make it work.

Some days are better pain-wise than others, so for those, be thankful and enjoy every minute of them. During the bad, and really bad days, you have to find a way to just get through them the best you can. It's not easy, but we can do it.

I am really glad you have a doctor who is helping you. That in itself can make a world of difference in your quality of life. I know that before I started being treated by my current PM doctor, I missed out on doing the things I LOVE and NEED to do as a mom, wife, business owner, etc. I found myself sitting on the side lines watching life pass me by and I hated it. Now, I am able to do so many more things than before. I lived in pain for years before being referred to my doctor, and I am a much happier person now than before. I'm still dealing with pain, but the key difference is that my pain is being managed. It's not all about medications either. Many of us use other modalities as well- it just takes time, patience, trial and error. Eventually, when you and your doctor find the right combination of all these things, you will see a difference.

Please continue to post. You will find lots of kind and caring people here. You will find lots of knowledge as well. Take care!!

 
Old 10-07-2007, 06:22 PM   #4
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butrfligirl28 HB Userbutrfligirl28 HB User
Re: Just looking for some support

Aaron,

Welcome!

I know where you are in your journey. I am 30, and have been a CP'er for over three years now. I went from one doctor to another, searching for the "cause" of my pain. My pain is abdominal also. Everyone doctor ended up chalking it up to endometriosis, and all the abdominal surgeries I have had. I was exhausted in my search.

I remember the day it hit me......I am going to be this was forever. It was terrifying, and strangly calming. I read where doctors are now looking at chronic pain as a disease all it's own. It doesn't matter if they know the cause. I know when it started, and I have my own theories. I may never know exactly what causes my abdominal pain, and you may never know either. It's a tough pill to swallow, but when you let go of the "why", you can deal with "how."

How can I live with cp? How can I function at a level where I have the best quality of life available? Be open minded. There is not ONE person on this board that can do everything they used to. There are many things you lose, but you can replace them with something different.

I am so glad you posted. You are at a very important step in your journey. Just know that it never ends, and that's okay. I still have days where I wonder how I can live better by accepting my limitations and finding ways around them. I see a psychologist that specializes in chronic pain. This is new to me.....(see, always learning).....and I have found such comfort in speaking with another professional that has cp, and manages to have a career as well. When I started I could not work at all. Now when I whine about the pain doc, or being tired of the pills, he reminds me that it was not that long ago that I couldn't work, and now I am able to work full-time.

Keep record of your accomplishments. Push yourself, gently. Find what works for you. And keep posting! I never did this before CP either! Now I have wonderful friends, and an appreciation for my body and what it still CAN do.

Take Care My Friend,

Amanda

Last edited by butrfligirl28; 10-07-2007 at 06:25 PM.

 
Old 10-09-2007, 04:59 AM   #5
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Join Date: Oct 2007
Location: Pittsburgh, Pa, united states
Posts: 17
SteelTownPain07 HB User
Re: Just looking for some support

Hello there,

I just want to say thank you for the replies. It is greatly comforting to hear from others that suffer from the same affliction that plagues me; however, it is not a "misery loves company" type of comfort, but the comfort from speaking with someone who shares a common experience and lives from a similar perspective.

The greatest relief I have from my current situation is my work. I am incredibly fortunate to do what I love for a living, and I am able to take my mind of everything and lose myself in what I do...so that is a great help to me. As I am sure most of you have done, I decided a while ago to refuse to think of myself as "sick", but merely note that I am some limitations; however, I refuse to let those limitations hold me back from living life to the fullest extent and enjoying myself as much as possible.

In regards to the reactions from other people that do not suffer from CP, I know where you are coming from. I can't begin to tell you how many people have said, "wow...you're so lucky that you get to be on pain meds....I love pills!" It's a sad thing to hear, but I think it's a testament to where we are as a society. It still irks me to no end to hear people wish a CP issue on themselves for the medication....if they only knew. As far as the others offering the "just deal with it advice"....to them I say, "walk a mile in our shoes."

Thanks again for the replies, and keep in touch!

Your Friend,

Aaron

 
Old 10-09-2007, 10:19 AM   #6
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Join Date: Oct 2007
Location: US
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TideAlumni HB User
Re: Just looking for some support

I know what you mean about friends saying they wish they had a condition that warranted pain meds on a daily basis. They really have no idea. No idea about the constant pain we suffer, both physically and mentally. Also, and maybe more suprising to them, the pain of taking the meds and for many of us being dependent on them. I am tired of the dependency, myself, and am starting Suboxone treatment this week. Hopefully it works for pain like they say it will, otherwise I will be right back on the narcotic pain meds.

It is a constant daily struggle and many people are going through it just like you are. I know that doesn't ease your pain, but sometimes it helps to know that you are not alone in your struggle.
Be vigilant with both your pain and your medication, and while your life will probably never be the same, you will find a happy medium.

Best of luck.

 
Old 10-09-2007, 10:23 AM   #7
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Join Date: Oct 2007
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Winnie31 HB User
Re: Just looking for some support

I suffer from pelvic pain on a daily basis, so I know what you are going through! I also have a very good doctor that takes care of me. From what I have been reading many people have such problems finding a good doc that I feel very fortunate for him.
For a very long time I felt alone in my journey, not that I am happy you are suffering but it is comforting to know there are other people that walk in my shoes everyday. This sight has been very helpfull for me and there are some days I thank god for it.

Winnie31

 
Old 10-09-2007, 07:25 PM   #8
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Join Date: May 2007
Location: WV USA
Posts: 128
whosit HB User
Re: Just looking for some support

I hope you feel better and they are able to find the root of your pain. i too went through alot of scrutiny before finally finding a doc that wanted to find the cause of the pain and treat it with the right meds. and was diagnosed with trigeminal nueralgia type 2....something that would have been found easily if the other docs who labeled me as a pill seeker would have done an MRI on me. welcome to the boards and feel free to ask any of us for help on any issue you have with PM. you will find we are a very supportive group here and try to help one another.


whosit

 
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