Is that a disorder? I get to points when I am in soooo much pain that I seriously cannot focus on ANYTHING but pain. It is so bad that when I go to the E.R I sound like a drugged out freak. I wouldn't be able to fill out a basic common sense form if my life depended on it. Last time I went in, it was 2am and in so much pain it warranted an ER visit. I had to wake people up to drive me and watch my son. All I could tell the DR was that I was in a lot of pain. I attempted to give him a rundown of the last decade of my life dealing with chronic pain and even as I was listening to myself speak I knew I sounded like a lunatic with a speech problem. He wrote on my discharge paper "mental disorder" and sent me home.

Mental disorder? Are you freaking kidding me? Though thatthat's probably exactly what it looked like, a crazy derranged person at the time, I'm starting to wonder if that's true? Does anyone else experience this? I've had my DR of 10 yrs tell me "its all in your head." He was referring to the pain. That is definitely not true because that inner voice everyone has that tells them to: 'run a little farther', 'don't give up', 'you can do it', or whatever... well my inner voice is the drill instructor from Full Metal Jacket. He doesn't take any crap. The sound of that guys voice is always telling me to suck it up, I'm fine. The pain just doesn't listen.

Recently I've tried a different approach to deal with my 'pain brain' by reciting all the states in alphabetical order, then again by listing the states major cities and professional sports teams. That's my distraction technique. It gives me something I have to focus on and makes me feel not brain damaged.

I have Chronic Myofascial Pain stage 2. It sucks. I should be on painkillers but I'm testing out other methods before going that route. I have become so vegetarian I border on vegan. I swim every chance I get and lift weights. So far its been helping! I have more good days and less terrible ones. But those terrible days last for 4-5 days and it is horrible. Do I need drugs all the time? No. Occasionally? YES!

The 25 page study they did on my condition specifically states that doctors will think I'm crazy and making my pain up. This is because it doesn't show up on ANY tests. Not xrays, not MRI's, nothing! They can only be felt. They are huge knots that feel like gravel and touching them makes them hurt more. The best part of the study is when they refer to the pain as "a rabid dog in your living room." That's the most accurate description ever!

The point is that I'm starting to wonder if I AM crazy??? I seriously don't think so but isn't that what a crazy person in denial would say? I just want to know if anyone else experiences this 'pain brain' thing? And if so, how do you deal with it? Is there a specific name for it? Or am I really crazy? I'm open to any and ALL suggestions. Thanks guys!

Hi Fix,

Been wondering how you were doing.

I don't think you're crazy, but sane people can do crazy things, smart people can do dumb things, etc. I think most folks here can at least understand/relate to that. Stress... (e.g. pain) can certainly push us over the edge under extreme circumstances.

I am concerned when you say things like, "I get to points when I am in soooo much pain that I seriously cannot focus on ANYTHING but pain." If that's venting (we all vent at times, and that's fine, especially here), that's cool. But if pain is really taking over your life to the point that it consumes you and becomes incapacitating... that's not so good.

The fact that you have "more good days and less terrible ones" is a good thing and, IMO, something to keep in the forefront of your thinking and coping.

There are many ways of coping/dealing with chronic pain. Most of mine involve distraction (so I'm not thinking about pain to the exclusion of all else), but mine don't work for everyone, and there are others. I've tried a lot/most of them, so I know firsthand that it can be a difficult process to find what works best for each of us.

coping dealing with chronic pain

The Intractable Pain Patient’s Handbook for Survival

Have you made any progress with finding/seeing a myofascial pain specialist or therapist?

Doc

I was diagnosed with trigeminal neuralgia and can definitely relate to what you're saying. This pain is invisible, if someone looks at us, we look "normal", other than the wrinkle between our eyes or looking tired. I am in pain every day, some days more than others. I had to quit my job last week. Unless you have chronic pain, you can't possibly understand it! You are not alone.

It is usually after a few days of trying to just suck it up and deal with the pain that I experience the 'pain brain' thing. Its like my breaking point. I get so frusterated that I am begging people to just do something and I get stupid suggestions that I've clearly tried repeatedly and THAT is when I snap. I don't know about everyone else but when you have been spending plenty of time as hells secretary, one can have a very short fuse. In my case, after going so many days without a break I have no fuse. I try so hard to remain as calm as possible but its only a matter of time before I turn into the Hulk. I start yelling and cursing because no one is listening. That's when I break down and just ball and ball. That's when pain brain kicks in and it is so hard to focus. I know I need medical attention just to get my knots to release but I don't go anymore because I know no one will help me and all I will get is more pain and anger for my trouble.

I have been following a diet they recommend for Fibromyalsia because its like the cousin of what's wrong with me. I've been doing it for a month now and I'm having more 'good' days than I ever have so that's awesome! I haven't gotten to a myofascial release place yet and that's because the closest is 2 hrs away in Kansas City. I have the luxury of living in the middle of nowhere. Car trips are very uncomfortable for me, especially long ones like that, so its my fear of the drive that has prevented it.

I have always said I wouldn't wish this pain on anyone. However I now would like my Dr to live in my hell for 5 days and let me know how he feels afterwards. It would no doubt change how he deals with me. I haven't worked since I had my son 2yrs ago. There is just no way I could even just sit at a desk and answer phones for 8 hrs. I moved in with my parents so they could help with my son(lucky me! Just what I've always dreamed!). I hate it here because they live in a tiny town in kansas where I grew up. The second I graduated I moved to Dallas so to have to come back here was a real drag. But I had no other choice and I'm glad I did it. I couldn't imagine trying to care for a toddler on my own when I can hardly care for myself. Oh the sacrifices we make for our children. What makes it worse is that my sweet little boy asks me "mommy feel better now?" And it breaks my heart. I also feel like the worst parent ever because I can't take him outside or to the park or even sit on the floor and play toys for longer than 5 minutes. Grandpa is in charge of outdoor activities. On my good days I do as much as possible with him and its awesome! Call me selfish but I want more good days.

Treating you in a crazy person

WHEN I SUFFER EXCURSUATING
EXHAUSTING CHRONIC PAIN
AND WHEN I MORPH INTO A MONSTER
NO YOUR NOT CRAZY
JUST SOMEONE TRYING
TO BE
the normal you
you were
operative word
WERE

Someone who cares

hey,

just wanted to say
thank you for writing what i feel
as do i suffer so many different
yet all connected
it is only now i am working on
the nerve related issues
no friend
as i call it the hiccup in the road
breast cancer
did away with both breasts
i found the lump in the right one
your not nuts
i'm certain i'm not
sad yes
because it has taken so many
years to find the right
kind of medicine and right amount to give me
SO I COULD HAVE SOME OF MY LIFE BACK
AND THAT'S JUST THE MECHANICAL PAIN (OPIATES/SIDE EFFECTS MUSCLE RELAXERS SPASMS)
AT C5/6-C6/7
#1 SURGERY PLATE 6 SCREWS
#2 SURGERY DONER BONE AGAIN AND CAGE
THE SURGERY THAT TOOK ALL AWAY
for about 5 hours worth of everyday ordinary
TASKS LIKE GOING TO THE LADIES ROOM
WITHOUT PEEING ON MYSELF
this came along with #2
#3 taking off my breasts
not what i expected but
what the he**
in a 2 year time frame

there is no other way but to mentally
try and get there
where you almost pass out

pain

personal
ailments
indescribably
nagging

not bad if i say so myself

someone who cares

Fix,

I think you've come to the right place, because so many (all?) of us have been where you are and experienced similar feelings and incidents. I think, for some of us that have been through the ringer, part of why we're here is to try to spare others from the same repitition of ordeal, and shorten the learning curve. Things like the Kübler-Ross model, the Vicious Cycle, The Politics of Pain, The Guinea Pig Complex, How to Talk to Doctors About Chronic Pain (and how NOT to), How to Cope, and many many more.

For now (I'm dealing with my own "stuff" right now), keep thinking about those good days, and Hang in There!

Doc

Dear fix me up, I have a similar nerve damage occuring condition that isnt fixable & i understand all that you are saying about the chronic pain because i have had it 20+ years. I think that pain can make us short tempered & much more but insurmountable pain can make us act like a crazy person, why exactly do you wait or not want to take pain meds to keep from going to a screaming, angry stage? Yes we do so much for our children like your parents are doing to love you so much to help with you & your son, so gracious of them imho, grace is the most important virtue we all must have with severe pain & patience otherwise we all would look like nutcases! Especially because we fall into the category that we need mercy, we are at the mercy of others & drs & famiy & it bites but its the truth, imho.

Here is some trigger point info that might be helpful for you - some do it yourself ideas and links -
http://neurotalk.psychcentral.com/thread125577.html


this link has tons of self help info from our TOS forum , but many of us get myofascial pain also -
http://neurotalk.psychcentral.com/thread84.html

I use a far infrared heating pad, IF stim, epson salt baths, various vitamins/supplements...