havent posted in a while/pain still here

[metronycguy]

my life with pain is so weird, few people understand it.
on good days i get out and ride my bike , and than at night i deal with increased nerve pain, may nights i dont get to sleep till after 330am, chasing the pain all night long, trying to do that delicate balance of medicating and not overdosing.
i realize now that my pain management doctor doesn't have a much of a clue of what is going on with me after 7 years of treatment. very discouraging.'
my pain is very complex and extremely bad at night , when he s33's me in the am, i am usually just groggy but not in insane pain.
i have my depression and anxiety under control finally, that seemed to take off out of nowhere, i guess all it takes is one major trigger for the anxiety and off you go .

i may look into some kind of study where they scan your brain for pain and see the images as the brain changes with the pain signals. i hope it is in color.
i need to try and get dextromethorphan and try tegretol next.
i finally got prescribed adderall, it made a huge difference in my ability to get things done, my mood and ability to focus.
i still have the problem with falling asleep despite the adderall doses. i will write about that latter it is the hardest situation.
i have been very fortunate that i have been able to ride my bike this summer, once i got on the recumbent bike it helped with a lot of my medical problems, but probably caused other problems. my digestive system goes into over drive on the bike, which id a good thing, it gets the blood flowing and counters the narcotics constipation effects.
the mood change for riding the bike , as many of you hand cycle users know is great.
i should try a hand cycle some time , wonder if it would be easier on my lower spine troubles.

[2ndtwin]

I'm sorry your pain is so bad. Getting your depression under control will help your pain level. Maybe it's time to find a new doctor. Keep your spirits up. We are all hear to listen when you need it.

[betheny]

Adderall is amphetamine, keeps you awake. I'm really glad to hear you have the depression at bay, Mike, that's a huge step in the right direction. Kinda hard to live your life when that black cloud is keeping you in bed! I'd never have guessed you have depression issues.

It is discouraging, when the pain experts have no clue. Walking the line between hellish pain and overdose is no place to be. Everybody seems to fall over the edge, eventually. With your level of independence and living alone I'm afraid nobody would be there to catch you if you fall, e.g. get you to the ER to get your stomach pumped.

Working w/out a net, on a wire that has claimed so many lives. Wish I could be blase' about it but I lost one of my best friends to a toothache, for the love of Pete. (To the meds they gave her for the toothache, to be more specific.) Been looking to replace her for 5 years. I know now that her spot will just be a big Vacancy sign for me, forever. A hole where Patti used to be.

Sigh. That was cheerful, hmmm? Didn't mean to be a downer. Really do want you to be careful. Now I'm going to get scared when you go on those essential CC vacations.

If you have space for your recumbent AND a handbike, that seems an excellent idea. Repetitive injuries suck, the more variety the better. I worry about the hand cyclist/manual chair users, SO much pressure is put on their shoulders. You could divide the load between shoulders and hips, though, and with your walking, that seems ideal.

[metronycguy]

hi betheny,
thanks for your reply and thoughts i am just catching up , but tired
, had some really good days the last week. so that is a big plus. the depression started rearing its head over a year ago, it moved in and took me awhile to figure out what was going on.
the pain has been chronic and intractable as they say.
the adderale really lifts me up, but i can seem to get enough of it to keep me awake for a full day.
maybe my dose just need to be adjusted again, i am using the extended release , but 30mg at 6 hours i am falling asleep.
i have a feeling i dont slep well at night. i am always exhusted at 3pm to 5 pm, now the weird thing is i am trying to find the less of two evils.
if i am exhausted i start feeling myself falling out seated, i really want a nap badly. the problem is laying down or even falling asleep in the recliner chair or arched over a hammock will guarantee a wake up with out of control pain. that pain will take a while to manage and get under control, if i am lucky and can get it under control, i may get 15 minutes off a nap, if i really want to sleep i need to take some strong breaktrough meds, but then i have head fog and heavy eyes and cant do crap, the day is shot.
my solution has been to take more adderale, if i have enough energy to get up and move around, or at least not fall asleep sitting , i will have less pain, and need less breakthrough meds.
its somewhat crazy sleep or nap= increased pain

[betheny]

Saying you crash at 4 pm makes me think adrenal fatigue, Mike. Doctors don't test for it. Reading this article (link below) and taking the advice seems to have finally started putting me back together. I went waterskiing AND was out until midnight on Saturday, for me that is HUGE. (Although I did have a 2 hr. nap.) I'm currently planning a big trip, first trans-Atlantic trip since sci (To compare, I took 4 trips the year I was injured). I hope I don't jinx myself by saying all this... Another comparison: 2 years ago I was invited to speak at Rally for the Cure and couldn't even fly to NYC, had to eat those tickets and let Wise down, spent that time in the ER mainly trying to figure out what was wrong with me.

So, judging by these improvements, it seems my recharging my adrenal glands was necessary. All of our bodies have had huge stressors, obvs. I kind of wonder if the ones that had the chance to walk, like you and I did, didn't stress even longer and harder than those with less functional return. We had that giant carrot dangled in front of us. Rehab for me was essentially 2 years long, just that constant eternal grueling quest to walk across the room, ya know? Maybe this exercise will be the one to do it, or that exercise, I just need to try harder. Maybe if I do more of ALL the exercises. Maybe if I go on a plane and leave my chair at home. It was this long, loud internal refusal to accept who I was. And I know you're still pushing the physical envelope.

If you do have adrenal fatigue, adderall may make it worse in the long run. Read this article I'm linking, seriously. I hope it will ring a bell.

Looking back, I feel like a switch was flipped in my body in 2004. I kept saying the day they told me my brother was found dead was the last day of my youth...then I read this about adrenal exhaustion. I now think that day was the straw that broke my adrenals, in truth. I'd had sci with the million lost friends and other changes, we both lost jobs, husband had to take a job in OK while I did suspended treadmill training and raised 2 kids alone in TX for 6 months (with a brand new sci!), moved to a new state, aging parents, stressers ad infinitum, for the few years prior. Losing Del was the last I could take without recharging. I developed Graves disease which sure didn't help. I've been reading there is a connection suspected between adrenal fatigue and the autoimmune diseases like Graves...I buy it.

It was the lists that kept mentioning the essential 4 pm nap that finally convinced me. I scheduled my life around that nap. I remember some lady calling to bitch at me for planning our first DC rally at 4 in the afternoon, (some care vs. cure freak) and I felt she was really inconsiderate to interrupt my sleep LOL. She said "It IS 4 in the afternoon." I said "And I HAVE to sleep at this time." I haven't taken the lab test, just followed the healing instructions as best I could. They're common sense, I had to do it anyway unless I wanted to die of Graves.


http://www.naturalnews.com/019339.html

Symptoms of adrenal fatigue:

Morning fatigue -- You don't really seem to "wake up" until 10 a.m., even if you've been awake since 7 a.m.
Afternoon "low" (feelings of sleepiness or clouded thinking) from 2 to 4 p.m.
Burst of energy at 6 p.m. -- You finally feel better from your afternoon lull.
Sleepiness at 9 to 10 p.m. -- However, you resist going to sleep.
"Second wind" at 11 p.m. that lasts until about 1 a.m., when you finally go to sleep.
Cravings for foods high in salt and fat
Increased PMS or menopausal symptoms
Mild depression
Lack of energy
Decreased ability to handle stress
Muscular weakness
Increased allergies
Lightheadedness when getting up from a sitting or laying down position
Decreased sex drive
Frequent sighing
Inability to handle foods high in potassium or carbohydrates unless they're combined with fats and protein
In addition to noticing these symptoms in yourself, you can objectively check for adrenal fatigue by using the following three tests:

Ragland's sign (blood pressure test) -- (Equipment required: Home blood pressure kit) Take your blood pressure while sitting down. Then, stand up and immediately take your blood pressure again. Your systolic (first) number should have raised 8 to 10 mm. If it dropped, you probably have adrenal fatigue.
Pupil dilation exam -- (Equipment required: Flashlight and a mirror) Look into the mirror and shine the flashlight into the pupil of one eye. It should contract. If after 30 seconds, it stays the same or, even worse, dilates, you most likely have adrenal fatigue.
Pain when pressing on adrenal glands (located over kidneys)
Though the ACTH laboratory exam doesn't effectively test for adrenal fatigue, a salivary cortisol test can. You don't need a prescription for the exam. In fact, you can even buy the test online, do it at home and send in your sample to a lab for the results. Dr. Wilson is very positive about the effectiveness of the salivary cortisol test in diagnosing adrenal fatigue. It is so valid and accepted that Plan B Medicare covers it and "they don't want to cover anything they don't have to," he quips. If you don't have insurance, rest assured that this non-invasive test is also very affordable.

Taking back your life

If you take your treatment plan seriously, you can expect your adrenal fatigue to heal in:

* 6 to 9 months for minor adrenal fatigue
* 12 to 18 months for moderate fatigue
* Up to 24 months for severe adrenal fatigue

For help along the way to taking back your life, you may want to read Dr. Wilson's book, Adrenal Fatigue: The 21st Century Stress Syndrome. You can learn more about this informative book or about adrenal fatigue in general by visiting Dr. Wilson's web site, AdrenalFatigue.org, or by calling 1-888-ADRENAL.

Editor's note: This article is not an infomercial. Truth Publishing was not paid to write this article and receives no money from your purchase of the products mentioned here.