I think I thought yoga was going to help me more than it actually has thugh it does help.

My TMJ problem has been steadily worsening and I am a little more than scared and have added a muscle relaxer. I do not know what I would do without pain medication some days so I, for one, have changed my mind

I think a lot of it for me is that I worry that somehow I am going to be denied access to pain meds, as I have been denied access to pain management by my auto insurance. I am just now starting to take up that fight again. I dont' want to be dependent on a service I might be denied, I guess. But I will cross that bridge when I get to it.

I do have a pysch doc in Denver who has helped with the pain management when no one else would. The auto insurance sent me to him to discredit me further but eh is the only one who will help.

I am considering moving back to a place I do not like because my doctors are there wno know me and can help me when I really need it despite my insurance and in five months, lack thereof.

ah how i envy those who can tolertate pain meds! i've never been able to take them to much of an extent, but over time it's gotten to the point where i can't take any narcotics/opiates at *all*, and i even get migraines sometimes from a *smidge* too much ibuprofen!

it's beyond frustrating.

the last time i took oxycodone i ended up in the er from throwing up to the point of dehydration and a migraine that sent me to the moon - and i took an extremely low dose. but i was in SO much pain, and nothing was touching it (i.e. ice, rest, ibuprofen, my regular daily cymbalta & klonipin, meditation, etc.)

i really don't know *how* i tolerate the pain at this point. i think my senses and my brain start to shut down somewhat just to get through. i know i can't let myself *think* about how much pain i'm in at any given moment or i'd explode from the fury and grief ...

Hi. Sandy here. I went off pain meds because, quite frankly, pain meds don't work for chronic pain. The body is built to transmit pain signals as if we have an acute injury. It THINKS I have an acute injury, so it will only intensify the pain signal trying to tell me that I am injuried. When in reality I am not. The pain med then simply quits working. Docs call this "tolerance levels" but I call it my body simply finding a way around the pain meds.

So even if I had the nerve pathways cut with a knife, the pain signal would even run down the wrong way (down a motor nerveway even) to tell me that I was injured, even though I know I am not injuried, but simply having chronic pain. It has a job to do and darn it -- it will do it -- no matter what!!

After I finally was able to come to the conclusion that I have chronic pain, and that the pain was not curable by any pill, surgery, or other magical means out there... I had to come up with some coping mechanisms.

That is where Nebraska Medical Center's Pain Management Program came into the Picture.

It was an eight hour a day, five day a week, four week deal. It was INTENSE and not for the weak of heart -- let me tell you. You had better be committment and sure that you don't really think there is some magic bullet out there that is going to shoot down the chronic pain. Because it's a killer of a Program that first week... after that it does SEEM to get easier.

I learned to exercise every day, how to pace myself -- regardless of pain I did what I had to do .. and today PAIN does not tell me what to do. NOT AT ALL. Not unless it is an acute injury. Then I treat it as such.

The exercises are for flexibility, endurance, coordination and strength. It is NOT Aerobics. It is not RUNNING. I ride a bike for 20 min/3times a wk when I can get to a stationary bike today (in the program I had to work my way UP to that over the 4wk period). I walk 25 min a day... I had to work my way up to that as well. I walk 10 flights of stairs at least 3/wk. I did those stairs every day for 4wks --- but I also worked my way up to that amount and started at 3flights because even that much was a KILLER for me.

They had me in a pool doing water exercises -- NOT water aerobics. I still can't keep up with those. But I might be able to one day. I keep striving for that. I do those whenever I get a chance to be in a pool. Not often enough, sadly it is hard to find a pool warm enough.

They had me in sit down classes learning about pain and how it works on the body. How our mind and brains work. Lots of class time learning lots about how we teach ourselves the wrong ways to do things and think things.

Anyone on lots of pain meds is tapered off them slowly and carefully by a trained medical staff.

Relaxation, meditation are taught. Yoga and Tai Chi are big ways to relax and teach us how to control our bodies and our minds.

Icing properly, BEFORE the pain starts, before and after exercising, when we know pain is likely to strike... before bedtime when we know pain can often keep us away...

Knowing how to make a decent ice pack. That was a great thing to learn. Gel packs are great, but a real ice pack just FEELS better.

Craniosacral Therapy -- nerve calming therapy. Learning that our nerves are over exciteable and that I can CALM mine with this kind of physical therapy -- really made a difference.

And learning that my Emotions and my Pain were interwoven -- Cognitive Therapy helped alot. And I went in to see the Shrink KICKING and Screaming. Learning to detach emotionally from my pain -- give it shape, color, form -- and change it with exercise, relaxation, icing, and cognitive therapy... I even knocked a migraine out on my own WITHOUT Imetrix one day. Wore me out!!! But I did it!! And I was sooo proud of my self.

This last couple of weeks I've worked through a flare brought on by our move to Wyoming from Nebraska. Add to it tweeking my elevator muscles in my back and spraining something in my right hand. Ice, Relaxation, Rest, Lots of Water to Drink, Moving the right way, and allowing myself the right to rest the parts of my body that were Acutely Injured -- while not letting the Chronic Pain get a Break -- because it doesn't get a Break.. <g>

Pain does not tell me what to do today -- I decide what I get to do Today. And I do it Drug Free because then I am AWARE of my Surrounding and I can enjoy my Life. I can Participate in my Life. My Pain does not Interfere with my Life. It used to -- even with Pain Meds and Muscles Relaxers. Now -- because of Pain Management Skills I have -- It does not.

Do I hurt today? Yeah.. Always will... It's a fact I've come to accept. So I keep plenty of ice on hand, a relaxation CD in the machine, and remember to PACE MYSELF because if I don't Pace -- I will Fail -- every time.

I still take some meds for my pain -- Cymbalta for my Fibromyalgia, Trigeminal Neuralgia, Diabetic Neuropathy, and Depression. Topamax for Migraine Headache Supression and Trigeminal Neuralgia, and Maxalt-MLT for Migraines.

My Trigeminal Nerve on my right side was damaged by Bells Palsy in 1999. I also have damage to a muscle in my right ear that dampens sound, the lacrimal gland (makes tears), the right sinus (ack! for breathing out of that nostril), and I get this lovely tinnitus on that side all the time. That along with the pain that can run about a 3-10, depending on the day, and how much wind blows on my face. Even with meds. But not too bad.

My Fibromyalgia is pretty much under control except under stress, which the Pain Management Skills keeps to a minimum for the most part. If I injure myself, get sick, or don't get enough sleep -- I flare. If the skills I learned can't get things under control, sometimes a "Tune Up" with a craniosacral therapist can get things lined up faster. So pain can run from 0-10, depending on the day, stress, injury, illness, etc...

I rarely get a Migraine, but when I do -- I take a Maxalt-MLT tab and it goes away.

I found my fatigue was not so much a part of my Fibromyalgia but was Narcolepsy. My Pain Specialist discovered this for me when she sent me to a Sleep Specialist. Seems my Pain went Up and Down but my Fatigue was Always There. I do not have Sleep Apnea. But I do have Narcolepsy and probably had it for over 20 yrs. Just did not know it because I thought it was part of my Fibromyalgia Fatigue.

So now I take Provigil which helps me stay Alert and Aware during the day. Not the best med for what I have but I cannot take Ritalin because Ritalin puts me to Sleep. Yes -- A Weird Reaction... but it is what it is.

Cymbalta and Topamax can make me drowsy. So can many pain meds. That is the DOWN side to taking pain meds or other meds to help with pain. But it is the best I can do. We dropped as many meds as we could from my list and I am down to seven -- and only the three are for pain -- so not bad at all. The other four are for hypertension, hypercholesterolemia, diabetes, and the narcolepsy.

I slowly weaned myself off all pain meds (prescription and OTC) because I felt awful on them - it was like I was a crystal clear stream of water before them and a muddy swamp while taking them. I was having digestion problems, I got little to no relief from the pain, was always tired with little relief from sleep and I was spacey (couldn't concentrate).

Getting off of them, especially the narcotics, was hell - but I feel so much better now.

Because I am sick n tired of being a damn lab rat all the time....nothin worx wonders fer me, in fact, i ferget ta take em anyway....i just bury myself in the Bible and meditate and pray, and that worx better fer me....and also being able to talk about everything on TRIBE has helped me better than any medication ever could...I even stopped taking my PAIN meds for 4 herniated disks!!!! Boy, am I going thru it, but its worth it...

wouldn't recommend going off meds to anyone else - especially if ya feel like suicide or goin on a killin spree.... LOL

~M~

I never went off of meds, mainly because I never went on them, except for serious flares. I've had chronic pain of various sorts since I was 19, and I've never, ever really done anything about any of it except when it's been most acute, and even then, I've kept the pain meds to an absolute minimum.

In the past year, however, it has occurred to me that maybe if I actually treated the less horrendous flares a bit more aggressively that maybe they would be shorter in duration. So far, so good on that theory. Instead of an Aleve when my neck or back flare up, I go straight for half a Vicodin, and that seems to limit things much more quickly. It's dawning on me that maybe toughing it out isn't necessarily the best way to approach things overall.

So now I'm thinking maybe I ought to finally look into more aggressive overall treatment of the pain. Between long-standing back and neck injuries, fibromyalgia, and now arthritis in my shoulders and probably my hips, and more pain than I ever would have imagined possible from varicose veins/venous insufficiency in my legs, not to forget the TMJ and depression, over the years, I've just plain gotten worn down. My life has gotten so contracted that I just have to wonder if I might not improve its quality if I actually did something more aggressive about the pain.

Wendy

time passes...longingly lonely, for those of us who must wrestle with the nightmare of CHRONIC PAIN daily, hourly, minute by minute. This is just an excerpt from my experience with 'going off meds (the whole story of my dance with alienation, loss, disfigurement would just be a book).
It was in the summer of 2005 (July), the day after the 4th. As much as I've been able to piece together from what has been told to me, I asked for someone to call an ambulance. Apparently I had stopped, JUST STOPPED, taking the pain meds I'd been on for most of my life (approx. 30 yrs. of it anyway). I did remember thinking that everything seemed to be "replaying" -- like your video camcorder playing what you'd just taped and then, of its own accord, backing up and playing the scene again, over and over and over. I was taken to a hospital where I was told later that I did not know my name, day, month, year, who's the president, family members, where I lived, etc.) For the next week, I just slipped out of any timeline. Was admitted to the Mental Unit, where I had a seizure and was promptly taken to a regular surgical floor. Little by little I came around enough to understand that my memory had been erased for the past several years. All kinds of tests were done. No reason other than my just having stopped taking my medications (now here I should relate that I had been on Morphine for l5 years, pills and liquid, plus anti-depressants, anti-anxiety drugs, etc.) No one could figure out what had happened to the meds as no containers could be found in my apt. and I didn't really KNOW that I'd stopped. Just remember from the night before that I'd "heard" a voice in my head that said, "don't take the medicine." (I had almost died the year before from a bout with a very virulent pneumonia -- was in ICU for a month, could not sit up, had to lie flat, with a trach tube in my throat, ate nothing (fed through tube), spoke nothing, drank nothing. I don't know why I didn't die then???
When I came to that summer of July, the pain in my jaw was gone. Now, I thought, I will get myself off these drugs and be free, once again before I die. It was wretched, unspeakable and mind bending and I was doing it alone, here in my apt. Slowly (very) I finally felt the last of the morphine sweat leave my body about Thanksgiving of that year. I was much weaker than I had realized (from the pneumonia) and the morphine led me to believe that I had more energy than I really did have. But I was going to learn to live free of the damn drugs!!!
It was just a few days until Christmas and my son and two youngest grandchildren and I went for a walk at a beautiful land preserve nearby.
What followed is out of the "twilight zone". All I remember was that something glistened and I was drawn to it. My son said he called to me to move away from the edge and I was just about to move to do that when my world went flat. I had fallen off a cliff -- about 20 feet down and landed on some rocks.
It would be more time on a ventilator, a chest tube, broken bones in back, ribs, head injuries -- but I was still ALIVE and back on the drugs again. My tolerance was so high that they were pushing vials of the stuff in me and I still cried in pain.
I am still alive. (depending upon whose definition of what being "alive" means) I have a few close family members, (I did have a so-called friend, who, in the midst of all the chaos turned out to be a "player" -- isn't that funny. Me, at my age, taking someone's words for real love and caring. I feel as though I've been carved out inside me and I'm just this shell of a thing walking around.
Curious. One day it does have to end....I mean, it does, doesn't it? I'm rather counting on that. This life being more hell than any hell I could have imagined. If I'd had the information that I have today back then, when the trouble with my jaw started, then perhaps all my life would have been different. Perhaps. But then, i'll never know. will I?

once upon a time~

patricia

I have TMJ and went thru the MORA, the surgery and orthodontia. In that time, pre-op, I was on OXYCONTIN 3 times a day for three years. It surely made me more more comfortable, but it certainly left me with one heck of a physical dependency. After the surgery, *I just didn't need it or want it anymore.* Talk about deep naps and even deeper sleep. I did that bunches. The withdrawl was HELL, even though it was supervised. I absolutely thought I was going to mental. (Maybe I have anyway?) I was "fortunate" in that I never turned into a blimp from what should have slowed my metabolism. But in general, my lack of real need for them, even with some serious Fibromyalgia cooking, was not, for me, a way to live. I was a slave to that because of my now present but not acute problem.

I have a good pain management doc who slides me into his schedule to take care of nerve compression and trigger point stuff. I don't take much more than a tylenol any more unless I have a migraine. I did about 3 years with a mind-body MD/PhD in one on one therapy using CBT so I could get a better handle on my overall reactions and management to my very real and continuing chronic pain. She just happens to be one of the foremost researchers in the country on this and is well extramurally funded and published for her work. I am so fortunate to have found her. Even on the days when I go say spelunking or indulging in my passions for travel and going to Central American Archaeological sites where things are as hands and body on as you want them to be, I may be tired, sore and might take a bit to rebound.

Your decision to remain on your meds, taper or get off is a personal one. I have a medical background and those narcotics were flogging my liver, not now, but for the future. There is no free lunch with meds but I am obviously not opposed to them. The fatigue was really what got me and I'm on Gabapentin for nerve damage in my face. It helps and I'm continuing to adjust my dosage daily. I'm past that tired. My plan was to get off the narcs, find a doc and treatment that was going to sustain me in the long haul and to get my head on 'right for me" about dealing.

We're not all the same. But it does work to have reliable help and to experiment with several things if you are able. No judgments here. You have to do what you have to do to live and it is about QOL (quality of life).

Wish you the best. I work at this everyday. But I feel like I have my life back or at least have more control over it.

M.A.

that was my complaint also, Tired of not being able to think, I don't know if it actually stopped the pain or made me so stupid, I didn't relize how much pain I was in. any way I've had 2 level microdiscetomy, (low back surgery) and after surgery felt I was pain free,while on meds, but I was taking high levels the equivelant of 24 10/325 daily. I'm now down to 6 a day and I have had a real bear of a time getting there. now I seem to be functioning at a much higher level, and my difficulty now is sleep. or should I say skin crawling lack of sleep. would it be better to just stop alltogeter, exercise seems to be very important to being able to get any sleep at all, over30 min at a time. have the years of pain meds made me toxic. I have to get off I know if I do I can live (normal) again.