Friday, July 25, 2008

Five Painful Facts You Need to Know

I saw this article and was struck by how it can relate to Cushing's patients, and post-op patients who are going through the pain of steroid withdrawal.

Taken from, written by Robert Roy Britt, LiveScience Managing Editor

First off, let's set the record straight: Pain is normal. About 75 million U.S. residents endure chronic or recurrent pain. Migraines plague 25 million of us. One in six suffer arthritis.

The global pain industry peddles more than $50 billion in drugs a year. Yet for chronic pain sufferers, over-the-counter pills are typically little help, while morphine and other narcotics can be addictive sedatives.

An overview study published last month in the Journal of General Internal Medicine looked at multiple studies of pain and found "researchers don't yet know how to determine which [treatment] is best for individual patients." From studies of drugs to surgeries and alternative medicines, "We have found that there are huge gaps in our knowledge base," said Dr. Matthew J. Bair, assistant professor of medicine at the Indiana University School of Medicine.

So what is pain and why do so many suffer so long?

Pain is felt when electrical signals are sent from nerve endings to your brain, which in turn can release painkillers called endorphins and generate reactions that range from instant and physical to long-term and emotional. Beyond that, scientific understanding gets painfully fuzzy. Here's what's known:

1. Scientist don't understand pain

When you're in pain, you know it. But if scientists could fully grasp how pain works and why, they might be able to help you more. The American Academy of Pain Medicine defines pain as "an unpleasant sensation and emotional response to that sensation." Some pain is the result of an obvious injury. Other times, it is caused by damaged nerves that are not so easy to pinpoint. "Pain is complex and defies our ability to establish a clear definition," says Kathryn Weiner, director of the American Academy of Pain Management. "Pain is far more than neural transmission and sensory transduction. Pain is a complex mixture of emotions, culture, experience, spirit and sensation."

2. Chronic pain shrinks brains

If you have chronic pain, you know how demoralizing and debilitating it can be, physically and mentally. It can prevent you from doing things and make you irritable for reasons nobody else understands. But that's only half the story. People with chronic backaches have brains as much as 11 percent smaller than those of non-sufferers, scientists reported in 2004. They don't know why. "It is possible it's just the stress of having to live with the condition," said study leader A. Vania Apkarian of Northwestern University. "The neurons become overactive or tired of the activity."

3. Migraines and sex go together

It may not eliminate the phrase "Not tonight, honey ..." but a 2006 study found that migraine sufferers had levels of sexual desire 20 percent higher than those suffering from tension headaches. The finding suggests sexual desire and migraines might be influenced by the same brain chemical, and getting a better handle on the link could lead to better treatments, at least for the pain portion of the equation.

4. Women feel more pain

Any man who has watched a woman having a baby without using drugs would swear that women can tolerate anything. But the truth is, guys, it hurts more than you can imagine. Women have more nerve receptors than men. As an example, women have 34 nerve fibers per square centimeter of facial skin, while men average just 17. And in a 2005 study, women were found to report more pain throughout their lifetimes and, compared to men, they feel pain in more areas of their body and for longer durations.

5. Some animals don't feel our pain

Animal research could offer clues to eventually relieve human suffering. Take the naked mole rat, a hairless and nearly blind subterranean creature. A study this year found it feels neither the pain of acid nor the sting of chili peppers. If researchers can figure out why, they might be on the road to new sorts of painkilling therapies for humans. In 2006, scientists found a pathway for the transmission of chronic pain in rats that they hope will translate into better understanding of human chronic pain. Lobsters feel no pain, even when boiled, scientists said in a 2005 report that is just one more salvo in a long-running debate.

What you can do

Meanwhile, exercise is a useful remedy for many types of chronic pain.

In an Italian study detailed in the May issue of the journal Cephalalgia, office workers did relaxation and posture exercises every two to three hours. Over an eight-month period, they kept diaries, which were then compared to those of a control group that did not change habits. In the end, the group that exercised reported that headaches and neck and shoulder pain decreased by more than 40 per cent, and their use of painkillers was cut in half.

"Physical activity is actually a natural pain reliever for most people suffering from arthritis," concludes another study published in the Arthritis Care and Research journal in April. "Even minor lifestyle changes like taking a 10-minute walk three times a day can reduce the impact of arthritis on a person's daily activities and help to prevent developing more painful arthritis," said Dr. Patience White, chief public health officer of the Arthritis Foundation. "Physical activity can actually reduce pain naturally and decrease dependence on pain medications."

Thursday, July 24, 2008


I threw a party at my house tonight. I cooked for hours, and did a thorough cleaning on my house. Had the DH helping me a bit, but I did most of it myself. I had a wonderful time with my guests. Later in the evening, the people who stayed awhile sat out on the deck with me and we drank wine and chatted.

I could not have dreamed of doing this last year, or the year before, or even the one before that. I am so much better.

I am so thankful.

Tuesday, July 22, 2008

"ME, my bed, and I"

Borrowed from a new friend on myspace, whose site is a "ME-CFIDS-PVFS-FMS-MS-RA-Lyme-Lupus and related diseases support page". She goes by the name "ME, my bed, and I". I asked her if I could borrow this since so many of us Cushing's and post-op Cushing's patients are Vitamin D deficient. She graciously agreed:

Vitamin D metabolism and Th1 inflammation1,25-D is manufactured in the cytoplasm of Th1 activated macrophages by enzymatic conversion of 25-D to 1,25-D. The P450 enzyme involved is CYP-27B1, and the conversion occurs in the mitochondria of the activated macrophages. This conversion is catalysed 30-fold by the presence of Interferon-gamma, the cytokine characteristic of a Th1 immune reaction. The mitochondria do not have significant quantities of the enzyme CYP-27A1, which is necessary for 1,25-D to be produced directly from 7-dehydro-cholesterol, which is most probably the pathway that the body preferentially uses when one is isolated by geography or season from ingesting food with Vitamin-D in it. The Vitamin D ingested is converted to 25-D, and it then directly fuels the out-of-control production of 1,25-D in the mitochondria of the Th1 activated macrophages. Production of 25-D when exposed to sunlightThe keratinocytes of the skin can, by comparison, make 1,25-D directly from 7-dehydro-cholesterol, and they do this when exposed to sunlight. Because the final stage of this reaction is also catalyzed by any Interferon-gamma from any inflammation paracrine to the keratinocytes, any and all 25-D which is made from sunlight is energetically converted to 1,25-D (OK, well, NEARLY all ). Thus sunlight is not usually a significant contributor to the 25-D levels of Th1 patients. It is ingested Vitamin D which primarily fuels the over-production of 1,25-D in activated macrophages, and which exerts the immunosuppressive action upon the host. Ipso facto, when 1,25-D is elevated because a Th1 patient is ingesting Vitamin D, the immune system cannot kill the intraphagocytic bacteria, there is less cytokine release, and the patient feels better and may even become less symptomatic - in the short term. Of course, as far as we know, the bacteria are now (slowly, chronically) multiplying, unhindered, in the cytoplasm of the phagocytes. Dr. Trevor Marshall, PhDMacrophages also produce Vit. D in response to UV light (not just keratinocytes) 4/9/2007UVB-induced 1,25(OH)2D3 production and vitamin D activity in intestinal CaCo-2 cells and in THP-1 macrophages pretreated with a sterol Delta7-reductase inhibitor."In conclusion, preconfluent CaCo-2 cells and THP-1 macrophages are able to induce vitamin D activity upon UVB irradiation and hence combine all parts of the vitamin D photoendocrine system, a characteristic which is therefore not keratinocyte specific."Fish make Vitamin D in the absence of UV light See for example "Cloning of a functional vitamin D receptor from the lamprey (Petromyzon marinus), an ancient vertebrate lacking a calcified skeleton and teeth" personally believe that UV light is not necessary for for Homo sapiens either. Mankind has been hung up on the "sunshine" concept, and has not gone looking for the enzyme which allows the electrocylic cleavage of the sterol ring. So they haven't found itStandard human logic has failed to understand the steroidal nature of Vitamin D. Biologists are now publishing an average of one paper a day describing the steroidal actions of Vitamin D. But nobody in clinical medicine seems to notice. (VDR pubmed results)..Trevor..Read more on the Vitamin D Tutorial at the Marshall Protocol Study Site

Monday, July 21, 2008

Why My Purse is so BIG

I had surgery 18 months ago to remove a small tumor from my pituitary gland. I'd been sick for about 12 years, and very sick for the last 4. I went into the surgery thinking that I would go back to "normal" afterwards. Well, people tried to warn me it wasn't quite that simple, but I am sometimes optimistic to the point of being dense. So I found out the hard way (which really is the way I generally find things out) that recovery from Cushing's is not as simple as I'd hoped.

Recovery from the surgery was a breeze for me. I had a surgeon that I consider to be one of the best operate on me. (This doesn't mean I liked the man. I rather didn't!) I am very thankful that I chose him to do my surgery because it was easy. He had me up walking around the ward within hours of my surgery.
My cortisol level was 5 the day after surgery, and I was having great difficulty staying awake until they gave me hydrocortisone to get my levels up. Miraculous drug! I love it! Umm...I hate it, too. But I depended on it to keep me alive for about a year, so I have to give it it's fair props.

Recovery from Cushing's is a long, drawn out affair. If the surgery was successful, cortisol levels fall to below normal physiological levels. In order to deal with the stress of life, cortisol is necessary. Without it, you would die. Cushing's patients are used to having high levels of this hormone - it's what makes us fat, turns our faces red, gives us night-sweats and panic attacks, and lots of other nasty things. When we have surgery to remove the source of all the extra, our body goes into withdrawal of sorts. So we need replacement steroids for awhile until the body gets accustomed to the lower levels. The adrenal glands stop making cortisol at all while we are on the steroid, and we have to slowly wean off of that in order to get the adrenals working properly once more. Sounds simple, doesn't it? Well, it's not! An illness or stress make us require more. So that makes the wean take longer. It took me a little less than a year to get off the hydrocortisone.

Oh happy day! Won't need that anymore! Wrong! Here I am 18 months after surgery and some days I still need it. It's not often, but it happens. And that is why I carry a big purse these days. It is filled with the life-saving drugs that I still might need from time to time. There is hydrocortisone, fludrocortisone, a syringe with Solu-Cortef, and Zofran for nausea.

I am so ready for a smaller purse.