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11-18-2011, 02:04 PM | #1 | ||
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I tried to find some information that would clarify some of the ideas here but didn't have much luck so the best I can say is that there does seem to be a trigger somehow between cortisol levels and the pain of PN.
I've been on a steroid inhaler for 7 years that can "rarely" cause adrenal suppression. My pulmonologist likes to 'mushroom' his patients (keep them in the dark and feed them BS) so I can't say for sure I have it, but I've developed weird allergies and apparent asthma, went into hypovolemic shock from the laxative when I had a colonoscopy (eek) and a few weeks later had what appeared to be a convulsion in response to extreme stomach pain. My COPD isn't severe enough to make me that fragile and from what I've read problems in tolerating physical stress are characteristic of adrenal suppression. My body temperature dropped a degree at some point after I started it as well. I didn't have any PN until I'd been on the meds for 2-3 years and there seems to be a pretty direct linear relationship between the amount of steroid I'm taking and the degree of pain, more drug = more pain. I tried to go off it entirely but couldn't breathe (it can 'worsen' asthma, I think it can GIVE you asthma). I stopped it a couple of times and the first time I restarted it I could feel a burst of burning/prickling in my feet shortly after I took it, and the second time I could actually feel it traveling down my thigh and hitting my feet to cause burning. I don't know if I was feeling nerve transmission or if the sensation was vascular but I felt it. It is known to cause muscle rigidity and stiffness that seems to target the small neck muscles and I also felt a little 'herky-jerky' sensation in my neck that felt like you might think a nerve transmission could and my neck stiffened back up. I don't know if that was nerves or muscles though. I'm not sure how much of this is relevant to people who may have natural suppression but cortisol levels vary throughout the day and maybe pain could occur when you get a burst and your nerves just don't appreciate too wide of fluctuations. I don't know what is going on with the heat, my feet get hot to the touch too but I thought that was vascular. It does feel like the nerves are revved up and generating heat more than the warmth you get from a hot bath or something. My pain is rarely if ever triggered by a bath, etc, it takes prolonged exposure like hot weather. I'm not sure if I exactly fit here, but I really admire the people in this forum. I know how much it hurts and you keep on truckin' and trying to learn. ' Zygo "Take 2 cats and call me in the morning".. |
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11-18-2011, 02:30 PM | #2 | |||
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Wisest Elder Ever
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Well, using external steroids, tends to suppress your own adrenal steroid production. There are several steroids in the adrenal cortex.
These are the steroids made in the adrenals: http://www.vivo.colostate.edu/hbooks.../steroids.html It is possible that commercial synthetic steroids suppress ACTH in the pituitary, and hence everything then gets out of whack. This is what happens with patients taking long term opiates for chronic pain. The hypothalamic/pituitary axis gets suppressed, and the whole adrenal system becomes depressed. Cortisol is necessary for just about everything. Too much= bad results --elevated blood sugars, and many other nasties. too little= and all the functions that cortisol supports, suffer. This is seen in people and other mammals suppressed for long periods, who then have the external steroid discontinued suddenly. They often DIE as a result! That is why people on oral steroids are tapered carefully off, to avoid what is called an adrenal crisis.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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11-19-2011, 01:45 PM | #3 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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The improvements in the way I feel have, IMO, proven worthwhile. My pain levels are down, emotions under better control, more energy, and just overall feeling "better" than before. Follow-up testing has been pushed back until after the first of the year; depending on the results, I'll continue what I'm doing, reduce dosage to a much lower maintenance level, and/or address any still-depressed levels more directly. We're trying to take a conservative logical, tailored approach. Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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11-20-2011, 03:35 PM | #4 | ||
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I hadn't thought about the fact I had also been in pain for a couple of years. I don't know if low cortisol could cause PN but that measured, conservative approach to exploring the possiblity is a good way to look at it. I think people vary in what their bodies will tolerate without protest and as they learn more about genetics they may find idiosyncratic causes for a lot of conditions.
They seem to be beginning to acknowledge that the inhaled steroid I am on can cause cortisol depletion. I was on my full dose when I had the adverse events, I thought I might have been moving towards an adrenal crisis as well and carefully tapered down. I saw an article in one of the journals for pulmonary medicine which stated that 'mild deficiencies are common and not considered to be of clinical significance'. That makes me angry, the med I'm on is commonly given to asthmatic children and most of the cases of crisis have occurred in kids. I'm not sure if you have already mentioned it Mrs. D, but it is also listed as one that can cause B12 deficiency. Neuro, this is pretty low tech and won't work if cold triggers your pain as well, have you ever tried keeping your feet cool? I go barefoot all the time at home and sleep with my feet poking out from under the blankets. I don't like it but it works for me. Horses have good 'vibes' too, they have had some success with riding programs for autistic kids. Its common knowledge among horse people that a good old horse will take care when ridden by a child. I'm still wondering how the Chinese restaraunt caught the sea gulls... Zygo |
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11-20-2011, 04:30 PM | #5 | ||
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As it happens I used to use an inhaler years ago for my asthma , but only used it for emergencies - I don't know it was ever factor as I rarely used it. What I do notice is that my neuropathy seems to coincide with the peak times of Cortisol in the sense its better at night - esp midnight onwards and worse from early morning 7-8 am when it starts to rise. Perhaps this is partly why i stay up late and why mornings are extra bad too given the sleep deprivation is supposed to raise it too cortisol levels too. melon |
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11-27-2011, 05:23 AM | #6 | ||
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I'm trying nowadays to pay attention to symptoms and patterns. I've noticed that the nap followed by tingling in hands and feet is typically followed by heat.
My hands and feet get cold quite often now, so I've been trying to nap lately to get them warm again. It invariably works even if the nap is short. Anyway, I think it must be vascular, as suggested, at the same time as nerves are affected, or shortly thereafter. I wonder what cortisol does to/for/with/against B12. Stress of course typically affects cortisol levels and we know stress depletes B12. Whatever chemical it is that's being released after I nap - I wish I knew what it was. Then I'd take more of it from other sources. The 'tingling' isn't painful or annoying; it's almost comforting. It seems to be related to the body's effort at healing. |
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11-27-2011, 08:16 AM | #7 | |||
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Wisest Elder Ever
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I have not yet found a medical reference that shows that "stress" depletes B12.
If you have one I'd like to see it. There are laymen oriented sites on the net that clump Bcomplex together as helpful for "stress". But I do not think that the B12 in them is adequate for supplementation. More on B12. http://lpi.oregonstate.edu/infocente...ns/vitaminB12/ When body parts get cold and then warm up, tingling is typically felt by everyone. Quote:
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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11-27-2011, 04:04 PM | #8 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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So even if you knew the list of substances, you would then need to determine which one - or ones in combination - out of dozens (hundreds?) produced the effects you mention. Messing with these substances is risky unless there is a legitimate medical need/reason to supplement them artificially, and even then there are still risks attached - as with anything we take in - there's an equation of benefit vs. risk that needs to be addressed. There are LOTS of natural substances & hormones that we could take artificially that would make us "feel" better/good. Some athletes do it for "performance enhancement", and as with street drugs (and some of the hormones athletes take are now considered street drugs) these substances make the takers feel great at first, and then the hell (and problems) begins.... For example, endorphins (a.k.a. "endogenous morphine") are opioid-like hormones that can make us feel better in a lot of ways, and have many useful functions when released naturally/normally, but too much of them can result in depersonalization disorder, and sudden cessation is believed to play a part in postpartal depression/psychosis. http://en.wikipedia.org/wiki/Endorphin Messing with these substances and their delicate balance requires a lot of research, testing, and monitoring, and should only be considered when there is proven medical need and guidance/supervision. The same can be said for many of the supplements and natural substances marketed online and elsewhere. Natural ≠ safe. Doc Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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11-18-2011, 11:44 PM | #9 | ||
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I've done an experiment a few times where I put a cool pad along my spine while I'm trying to sleep. This has taken away the feeling of extreme heat. I got to sleep quickly. I got the idea from an experiment I found online on dogs where it was determined when you cool their spines, they feel cooler. |
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11-19-2011, 12:46 PM | #10 | ||
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melon |
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