Update.

Hello my dear friends and readers:

I know it’s been awhile since my last post.  Several things have happened.  Because of continued back problems I went to my orthopedic doctor and it turns out my spinal deterioration has increased.  I now have three spinal joints in deterioration instead of just the one.  Those would be the last to lumbar joints and the first sacral.  This is not that unusual in patients with Cushing’s.  Both the leaching of calcium from the bones and the strain from the weight combine to cause the problems, which are pretty painful.  When we add the swings of my cortisol into Addison’s territory part of the time and I get a double whammy.

I also have another problem which I began to feel when I took my airplane trip back in April.  That would be bursitis in the hips.  Because of the Bursitis it is difficult to sit most of the time and it is also painful to rise from a sitting or lying position.  Given I weigh 366 pounds is it any wonder I developed inflammation of the bursas in that area?

Since then I’ve been looking into more research on Cushing’s, its causes and effects.  I’ve also looked into research suggesting the incidence of Cushing’s is much wider than the medical community realizes.  Some of the things I’ve learned will be presented in other posts.  However, I still do have to put up with the new problems and adapt, which is taking some time.

So keep an eye out for what’s ahead.

Back Pain and Cushing’s

 

Sorry for not posting something for a while, but I’ve been kind of busy.  My wife, Debra, and I took a trip to see some friends in Texas.  While there this picture of us together was taken:

This is probably one of the better pictures taken lately which showcase my truncal obesity really well.  And that is part of the why on today’s subject.  One of the effects that Cushing’s has is that it causes back deterioration and consequent pain.  There are several mechanisms to the end.  One obvious one is the stress the weight places on the spine.  The other two are that Cushing’s leads to general bone deterioration often causing osteoporosis and deterioration of discs in the spine on top of that.

I do have spinal deterioration and a ruptured disc to add to the mix.  Although I started having back pain as far back as the early 2000s, it was in 2009 that I really had the extent of the problem brought home to me when I was struck by back pain so severe that I was bed ridden for a month and spent several more in a wheelchair.  It wasn’t until I managed to bring my weight down enough to fit into an MRI that the ruptured disc was discovered.  It presses onto the sciatic nerve.

At the time of the 2009 attack I was refused hospitalization on the grounds that I was not a candidate for surgery, though how they came to that conclusion without a proper evaluation is beyond me unless they were basing that opinion on my having a large Abdominal hernia from a previous surgery.  So on that occasion I was crammed screaming in agony from the pain into our small car and sent home, after my doctor had sent me to the ER for admission in the first place.  And, yes, I’m harping.

A couple of days ago I woke up in serious pain and gutted it through the first day hoping it would go away.  But the next day I went to see a doctor and have been taking a painkiller and a muscle relaxer which both make me kind of sleepy.  That’s one of the things which can be done.

There is also what are called TENS units, which use a small amount of electricity to neutralize the pain impulses sent up the nerves.  There is also surgery of course, which I think the doctor I saw thinks may be necessary since he’s asked me to follow up with my orthopedic surgeon.

Sadly, the options are growing fewer.  One of the research boards tasked with recommending standards of care under the new healthcare act in the United states recommended a few months back that TENS units should no longer be used in the treatment of back pain.  That’s sad because they are a relatively inexpensive mode of treatment. And it is being recommended that access to narcotics for those in chronic pain be even further restricted.

For a Cushie back pain can pretty well be counted on at some point if one’s condition remains untreated for any real length of time.  Just the strain from the added weight will cause it if nothing else.  Your doctor will determine if you need to be referred to a specialist, more often than not an orthopedic surgeon who will evaluate your condition and decide if surgery is an option or not.

We’ll see how it goes for me this time around.

A tale of Stretch Marks!

Everybody hates stretch marks.  We get them when we gain weight.  We get them when we get pregnant.  And, oh, how unsightly they are!  But guess what?  They can be far worse as any Cushie knows.  Here is a meme I picked off of Face book which shows fairly normal postpartum stretch marks, the most typical for women:

And the worse a woman is likely to see if they maintain anything like normal weight is here:

Sorry about the language.

  Those are more typically called striae and there’s a reason a woman will end up with those during pregnancy and keep them post-partum.  When I sat through anatomy and physiology class the professor teaching the class revealed something a little unexpected at the time about pregnancy.  During pregnancy women typically experience a rise in cortisol levels and actually develop Cushing’s during their pregnancies.  The body’s response serves the purpose of providing tissue mass to support and protect the developing child during the pregnancy.  Consequently women will develop stretch marks during the pregnancy and keep them after.

However, for those who suffer from any variant of Cushing’s the situation typically becomes worse.  The stretch marks get bigger, wider and will often turn anything from pink to purple.  One of my friends let me use this image of her striae showing how wide they can get:

And here are links to more images of Cushing’s striae:

http://www.riversideonline.com/source/images/image_popup/sn7_stretchmarks3.jpg 

http://www.dermnetnz.org/systemic/img/s/cush1-s.jpg 

http://www.skinsight.com/images/dx/webChild/striaeStretchMarks_16044_lg.jpg 

http://o.quizlet.com/h0q1jDE1x0sv5LUECmjMzw_m.jpg 

What can you do about the striae, nothing much.  Put skin lotion on them and accept them for what they are, a symptom of a much bigger problem.  If you’re big enough that you will be losing a ton of weight when you’re cured you may be a candidate for having some skin removed, that will remove most of the striae with the trade-off of some surgical scarring unless a really skilled plastic surgeon handles the procedure.  The striae just make us resemble our namesakes, the zebras, more than most folks with rare diseases.

Cyclical Cushing’s Syndrome

Hey there everybody!

Today one of my Facebook friends posted a link to a post on the CSRF website about Cyclical Cushing’s syndrome:

Cyclical Cushing's Syndrome

You have to wade through the usual Doc speak, but it’s worth the effort.  To summarize, Dr. A. Brew Atkinson is part of a group who noticed that some patients were cyclical way back in the 1950s and has been studying the phenomena ever since.  What they concluded is that a significant number of Cushies, upwards of one third in one sample of Cushing’s patients were cyclical, making it more common than doctors think.

They also noted the difficulty diagnosing for several reason, one being the need to do extensive testing, which is expensive.  Another reason is that cyclical patients do not respond to some tests, such as the dexamethasone test, in the expected ways.  That is something those of us with the disease know all too well!  So they suggested those patients with Cushing’s features yet who don’t have the expected test results should be considered for more extensive testing.  They also suggested certain testing, such as AM long-range urine or long-range serum cortisol testing with a suggested 28 consecutive day period which will catch most of the known cycles they’ve documented.

As noted, that is kind of expensive and don’t be surprised if insurance companies balk at covering the cost.  In my case we just happened to catch both peaks and troughs in the standard testing done, so I know I’m a cyclical Cushie.  What I don’t know is what pattern I fit because no testing occurred to establish my pattern.

If you didn’t already read the article please read the article if you are trying to find out if you or a loved one has Cyclical Cushing’s or if it was suggested to you.  And if you or your loved one may have it please persist in getting the right testing done.