Constant pain getting me down

I have been diagnosed with Post-Traumatic Trigeminal Neuropathy after a needle injury (differs from Trigeminal Neuralgia as my pain is constant and causation was trauma to the nerve) and I have been in constant pain for over 15 months now. I never knew constant 24/7 pain existed, that no medication could help, in this day and age!! Especially from something as small as a needle injury. Nothing can be done for me surgically, medication is my only option, but it isn't very effective, not to mention the side effects.

How do people in pain keep a positive outlook on life? All I can think about is the average age of death for a woman is 86 years old, I am now 35, that would mean 51 years of pain ahead of me. I am in despair thinking about the first sensation I feel in the morning and the last at night is pain. My future's looking bleak, I am off work sick and my career is in tatters. I feel terrible for all the suffering I am putting my fiancé and family through. I have lost friends. I need help, support and some light at the end of the tunnel. Any advice?

6 Replies

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  • Hi there,

    So sorry you're having such a difficult time. Suggest you search for PN on this site & you will be amazed (& a bit horrified) at how many people have Peripheral Neuropathy & are desperately trying to find answers. Also, thinking in terms of the rest of your life living in pain is the way to drive yourself into madness. Major change in thinking is required to learn to live with this. You are definitely not alone. Try not to let yourself sit in negativity. It`ll only make things worse. Find out how other people are dealing with it & then work out what might help you.

    Sincerely wish you all the best.

  • Hello , I have both peripheral neuropathy and trigeminal and I know how bad they are especially the trigeminal . I take tegratol for trigeminal and it works some . I have flares with it . I have in your shoes thinking I'm only 25 how can I live my life with this , they call trigeminal the suicide pain , unless you suffer from it you cannot know the desperation it can take you to . I'm so sorry the tablets don't work for you , I thought they could operate on it though . Gentle hugs and real understanding of what your going through . Xx

  • Yes, it's so very scary .

  • Hi Kerry-girl. I'm so sorry to hear about your pain, the trigeminal neuropathy must be awful to bear.

    I'm new to this site myself, (I suffer from peripheral neuropathy) and like you, was prompted to join due to the fact that I felt frightened and alone. Some people have kindly replied and given me support, but I've also found that looking up PN (and trigeminal for you) and reading the stories of others suffering, has helped.

    My PN can be a 24/7 pain, but sometimes there's a reprieve, when it's fairly bearable. I'm seeing the consultant in a couple of weeks, so don't know what medication she'll suggest, so I'm afraid I can't be of help there.

    However, please rest assured that you're not alone; I know it's difficult, but try not to live in the future, with sites like this and people combining experiences, it can only be a good thing and we never know what cures, or at least making it pain free, there'll be in the future.

    Stay strong and use others.

    Hugs

    Lizzie

  • Oh my goodness ,, I'm so very sorry ! I know how you feel ! I said the same think and I'm 59 . I'm miserable ,, and make excuses not to go out or be with many people . It sucks ! I don't know ,, I hope somehow you get better !

  • HI Kerri - girl , am so sorry to hear that you are suffering this way. I am familiar with PN pain and I can't even begin to imagine Trigeminal Neuropathy, I know none of the medications work 100% that is for sure. The side effects of some of them can be bad.I have been on Lyrica for over 5 years now, It does help but the brain fog is terrible. I tried to come off it but had to go back realizing that is was helping. Like you I feel so bad for my husband and son, I had to quit work and he is 65 now and still working, just to keep us in a medical plan. PN effects every aspect of your life socially, financially , mentally, physically, I could go on and on. Sorry this post was meant to be uplifting and inspiring for you, something positive. Just know that there are many people out there to reach out to , when you feel the need to vent and share your feelings. There are two books that I found to help me both by the same author Toni Bernhard Here is her website. tonibernhard.com , hope this is allowed here, I am in no way connected to her. Just found her books to help with learning to live with chronic pain.

    Donna

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