Living with chronic pain

Hey SP,

I have lived with excruciating headaches for the past 5 years now.  I also have comorbidities that include chronic fatigue, mild social anxiety, and inherently – depression.  Its taken me YEARS to figure out the cause, have bounced between a dozen different doctors and have spent thousands of dollars, but have learned that its just really bad TMJ, or jaw clenching (when I sleep).

However, this problem is not easily solved.  I have tried almost everything to cure it.  Spent 2 grand on a custom nightguard from my dentist, acupuncture, therapy, meditation, TENS, physical therapy, craniosacral massage 2x a week, muscle relaxers.  My dad has a ton of bills that he is still paying off, and my 25 year old sister feels so bad, she’s taking money that she was given as a wedding gift to help me get treatment.

I know there is hope, but I still get really down sometimes, and can’t help but think about ODing on pills or turning a gun on myself.  Living in non-stop pain is not easy, and I tend to isolate myself a lot of the time.  Additionally, there is something atypical of a severe headache that makes it really hard for me to socialize.  I often have a hard time verbalizing things, when I am in a lot of pain, and tend to feel pretty embarrassed after such encounters.

I don’t really have a lot of friends right now.  I spend most of my time alone, and I don’t really have anyone to talk to about this stuff.  The only thing that keeps me going is my band, which I am pretty active with.  Writing/playing music is the one way in which I truly feel that I can be free of my pain.

Nobody seems to understand how much pain I’m really in, and often, it seems like no one really cares.  All of my old friends, it feels like, have forgotten about me.  I have a hard time finding a reason to live, at times, and once – during a fight with my mom’s ex boyfriend – told him that playing music was the only reason that I didn’t kill myself.  I know I never will, because I refuse to give up on fighting for a cure, but I can’t help but think about it.

There are other things too, like the way I look.  Because of muscle tension and reduced blood flow, I’m always really pale, and I look kind of sickly all the time.  For that reason, I hate looking at myself in the mirror, and am kind of disgusted with myself.  That has always been really hard.  I don’t really feel all that good about myself anymore, as my functionality – ever since I got sick – has been so low.  And I don’t feel very much liked or loved either, as most the time, I feel rather unpopular, unnoticed, and unimportant in the eyes of those around me.

One of the worst things is that I don’t really feel like I have much to give.  I struggle so hard just to be social, and to be well received by others, that I am exhausted most the time.  Its like I’m constantly fighting an uphill battle, alone.  The loneliness is a really hard thing to cope with at times as well, and I don’t really know how I can reach out to others.  I can’t work because my pain is too great right now.  I’m not in school because I want to focus on eliminating my condition first.  I feel like I’m just stuck in an eddie, or circling around a whirlpool, waiting to get sucked down, or finding the strength to paddle out.

If I had some goals, it would be to rebuild my self esteem, to make some new friends, and to cut my pain levels down by 25%.

I know the next step:  I guess there are mouthguards that are the RIGHT kind (the kind I got do not help with headaches, just with tooth wear I guess) that I should invest in.  Either that, or getting botox injections to paralyze my jaw.  I just need to hold on until then.  I just wish I could ease my suffering until then…

Thanks for listening.