Just looking for some support - Pain Management Message Board

SteelTownPain07 · 10-06-2007, 11:45 PM

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

whitfield · 10-07-2007, 05:43 AM

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

ozzybug · 10-07-2007, 06:11 AM

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!!

butrfligirl28 · 10-07-2007, 06:22 PM

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

SteelTownPain07 · 10-09-2007, 04:59 AM

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