Feeling Defective

[TMJLady]

Hello, Everyone
    A little background. I had nine surgeries in two years, trying to repair my left jaw from degenerative arthritis. Yes, believe it or not, Temporomandibular joint (TMJ) disease can truly do that much damage; rare but true. The surgeries didn't work and I had to have my entire left jaw replaced with a custom made titanium joint in 2012. That left me with severe chronic pain as well as permanent nerve damage; a terribly painful condition known as Trigeminal Neuralgia. There is nothing left for the doctors to do about it besides manage the pain to improve quality of life.
   After being with the same PM doctor for three years, he retired. I was terrified that no one else would understand my rare condition and pain. I was right to be afraid. No PM doctor in the state had even heard of total jaw replacement.  Thankfully, after suffering with no relief for almost three months, I went back to my old primary care, who I hadn't seen in years, and he took on my pain management.
   My question is, does anyone else ever feel "defective" because you can't life a normal life without pain meds?  My doctor says that it's no different that any other medical condition and that there's nothing to feel defective about; it's a medical problem and these are the meds for it. (Tegretol and Oxycodone).
   Still, I'm a professional business woman, a wife, mother, and grandmother to one precious boy and I just feel like I should be stronger than the pain.

[Tuckamore]

Hello TMJLady,

Welcome to our Chronic Pain Forum. Please excuse my tardy response. I am delighted that you found us and hope you are still active.

I've been here since 2008. I don't think we have an active member with TMJ problems - but I know we have had them in the past. You're right it's a horribly painful and life disrupting condition. My heart goes out to you!

If you've done any research on our site, you'll know how very fortunate you are to have found a PCP that will treat your pain. It's difficult to even locate adequate pain management through PMPs.

Like you, I have a very rare condition among some common ones. I am just one in 300 ever reported cases in the world to have this rare condition. Most providers do not understand it - indeed don't even comprehend the name of the condition. I'm so tired of trying to explain. Some even think I'm making it up - until I provide them with the literature. So I get it from that stand point. I won't say I know how you feel - no one can truly say that of anyone. I can say you have my deepest empathy!

I too was a professional business woman - corporate level - until this condition disabled me several years ago. I am also a wife, mother, etc. Being all that is a tough roll when you struggle with Chronic Pain - but it's also what makes life worth living.

I understand the thought that we should be "stronger than the pain."  I felt and often still feel the same. Indeed that thought kept me going years after I was told I was disabled and could not remain employed. I just kept going, thinking - mind over matter! It's a great thought - but in truth it only goes so far. I'm certain you are doing more than most ppl would given your condition. Rest assured it's what helps you live every day to the fullest - but don't be hard on yourself. When all is said and done I'm sure you're doing the very best you can - and again probably more than most.

In short be proud of yourself, you are still able to function with your Chronic Pain. I'm sure there are many days that's very difficult. Our minds or psyche do play a big part in how we live and how we deal with and adjust to Chronic Pain. Just because you require opiates to function does not make you weak!

I've found MedHelp and our awesome members to be an excellent source of support and information. It's what has gotten me through many a difficult times with this Chronic Pain! I hope you'll find the same to be true. There is no one here with my main DX - but I've found that to a degree Chronic Pain is Chronic Pain. It doesn't matter where it is - or what is causing it. Ppl that live with it day after day often understand what their fellow pain members are going through.

I'll look forward to hearing more from you. I hope you'll be active in our Community. And remember - don't be so hard on yourself. It sounds like you are doing very well coping with you painful situation!

Take Good Care of Yourself!
~Tuck

[TMJLady]

Thank you for your heartfelt and supportive response.  I have always been an ambitious person and this condition did get in my way for a while. But for now, at least, I'm managing to have my career and be the best "me" I can be.  We just moved into a larger home, which I love, but the move itself was so stressful that it pushed my pain levels through the roof. As if moving isn't hard enough, right?
I am keenly aware of how fortunate I am to have found a PCP who handles my pain management. He is a real gem. He actually sits down, looks me in the eye, listens to me, and partners with me to determine the best course of treatment for my pain and all my other conditions and medications. He's truly compassionate and he's respectful. Those two things are almost unheard of in pain management. I am beyond lucky. I am blessed.
I wish every person with chronic pain could find someone like my doctor.