Sleep and Sleep and More Good(?) Sleep


Yup, it’s me again. I loved all your responses to the last post about sleeping! It truly does help knowing we are not alone in this battle we are in!

As I am writing this post, I have the overwhelming urge to go back to sleep! Again. Considering all the sleep I have had lately, it still surprises me that I am so fatigued. Yet, I made myself get out today and get a few things. By the time I got back home, I was totally wiped!

Now I am sitting here with my puddy tat in my lap, in the recliner, and will probably fall asleep once I sign off. At some point I truly would like a day with no fatigue or pain. Just one! Yeah, I know, pity party for one here. I just wish I could do the things I want or need to do!!! That being said, I am thankful to have another day of life and I really do appreciate it! Even on these bad days, I am thankful to know that at least I am here! There are others who would trade me the chance if they could.

I hope you are all well and happy today! I am up and down. I will survive this day (hopefully) and think about a better day tomorrow! Keep the comments coming! I love to read your comments. Please do not feel neglected if I do not respond to each of them. Some days it is hard enough just to post and if I missed replying to your comments, please know that I read each of them and when the energy is there, I respond. Just have had a bit of bad flaring so not all that “chatty” online. It really means a lot to me when you share because I know that I am not alone too!  Thanks to you all for your comments, encouragement and personal stories! ~Jen

Down Time


Ok, the down time from the title of this post that probably sprang to your mind is a vacation, holiday or something along that line.  How great would that be? To take a break and have some fun!

Sad to day, this down time I am talking about is not that type. When you have an autoimmune disease like lupus, one of the most frustrating symptoms is the “toxic” fatigue you can suffer at the drop of a hat. I know, fatigue is not bad, it just means you have worked hard and deserve to rest, right?

Wrong. The type of fatigue I am discussing is the all consuming, total shut down of your body where you have no control of when and how long you will be down. That is the fatigue I have had for the last five days.

It started innocently enough, just sleeping in one day. Or so I thought. It soon manifested itself into high gear and as of today, I have only been awake a total of about 20 hours in five days! No kidding! I mean, I sit in my chair for a few minutes and next thing I know, hubs is waking me up after several hours of me sleeping. I mean, I wonder when it happened and how. It is like a light switch has been flipped. I am “on” and suddenly I am “off”. It is utterly strange and scary when you have this happen.

I did call my rheumy and he said he thinks it may be both fibromyalgia and/or lupus acting up. He is hesitant to prescribe prednisone in case it is the fibromyalgia. He wants to see me on friday. Great… now another of my autoimmunes is acting up too? So in the meantime, I am taking ultram for the pain and waiting for friday. Some days I think I have forgotten how to feel “normal”.

So, as I sit here, or should I say “sleep” here, I hope things will work out and I can feel better soon. Have any of you had this toxic fatigue?

FDA Changing Pain Meds


This article is dated from July 2009. I saw this article and since so many of us with autoimmune diseases are treated with these types of pain meds, I thought it worthy of posting here. I understand the reasonings for lowering the amount of acetaminophen in these combination drugs and I hope it works out well. Enjoy the read! From Time Magazine’s webpage.

Wednesday, Jul. 01, 2009

FDA Advises Lower Dosage for Popular Painkiller

By Alice Park

A Food and Drug Administration advisory panel recommended on June 30 that the maximum over-the-counter dose of the popular pain reliever acetaminophen be lowered and that the current maximum single dose of the drug be available by prescription only.

Acetaminophen, more commonly known by the brand name Tylenol, is one of the most frequently used pain and fever relievers in the U.S. It has the advantage of not causing stomach bleeding or other gastrointestinal side effects that other popular pain medications, such as aspirin and ibuprofen, can cause. Acetaminophen is also found in several cold- and cough-remedy products as well as in prescription drugs such as Vicodin and Percocet. (Read “The Year in Medicine 2008: From A to Z.”)

But despite its widespread use, there have been growing concerns about the non-prescription drug‘s effects on the liver. The 13-member FDA committee convened specifically to address liver toxicities due to acetaminophen overdose. The group of doctors and patient representatives concluded that the daily maximum dose of acetaminophen should be reduced from the current allowable 4 g and that the maximum single over-the-counter level be set at 650 mg, down from the current 1,000 mg.

Experts stress that taken as recommended, the drug is safe. But because the agent is present in so many over-the-counter medications, there is the potential that users can unintentionally overdose. “People might be taking Tylenol and taking a combination cold product that also has Tylenol in it, and Vicodin, which also has Tylenol in it, and start combining medications and not realizing they are taking that much acetaminophen,” says Dr. Michelle Ruha, a medical toxicologist at Banner Good Samaritan Poison Control Center in Phoenix. (See the top 10 medical breakthroughs of 2008.)

Since 1998, acetaminophen-containing products have carried a warning label advising users to consult their physician when using the pain reliever in combination with alcohol. In 2002, the medication earned a warning advising users to avoid taking more than two acetaminophen-containing products at the same time. Nevertheless, in a study of adverse event reports submitted to the FDA since the 2002 label change, the number of liver problems has doubled, says Bill Soller, a professor of pharmacy at the University of California, San Francisco, who conducted the survey. “People don’t read labels, and physicians aren’t doing the communication in the office,” Soller says. “At some point, when you find the labels don’t work, then you’ve got to bump it up to the next level.”

That’s what the committee’s conclusions represent — a strong message that as safe as acetaminophen is, it can be made safer, to help people avoid accidental overdoses. McNeil Consumer Healthcare, Tylenol’s manufacturer, disagrees, citing 150 clinical studies on the drug’s safety if taken as recommended. In a statement, the company said, “McNeil Consumer Healthcare strongly disagrees with the committee’s recommendation. McNeil Consumer Healthcare believes that this recommendation is likely to lead to more serious adverse events as consumers shift to other over-the-counter products … in search of pain relief.” (See the most common hospital mishaps.)

There’s no guarantee that the FDA will actually follow the advisory committee’s advice and reduce the over-the-counter dose of acetaminophen. And even if the agency does, some experts aren’t convinced that the move will lead to fewer liver toxicities associated with the medication. “Honestly, I don’t think that is going to solve the problem,” says Ruha. “Most of the problem is with the prescription pain medications that contain acetaminophen.” Many people using drugs such as Vicodin or Percocet still don’t feel relief from their pain and either abuse their prescription or supplement with an over-the-counter medication. “The patients we see coming to our hospital from liver failure have either intentionally overdosed or taken too many prescription pain medications with acetaminophen in them,” she says.

Still, if the FDA does decides to follow the committee’s advice, it would represent an aggressive attempt to address the growing problem of liver problems associated with the non-prescription painkiller — one that goes beyond simply adding another warning label on a pill box.

Lupus Fog



This problem or fog is something many of us have had to learn to live with. We all have different ways to cope. I personally keep all my appointments in my blackberry and if it is not in there, it doesn’t get done. I need to start making lists too, since I start one thing and then divert to another, then another until I forget what I originally was doing. It can be very frustrating knowing something is “in there” but you cannot access it. Your family and friends may think you are wierd, but this is a legitimate manifestation of those who suffer from lupus. This article is well written and helps explain more about it. Enjoy!

This information was obtained from


Memory Loss and “Lupus Fog”

The term “lupus fog” is almost universally known to people with lupus. The phrase reflects the difficulty that you may have in completing once-familiar tasks, such as remembering names and dates, keeping appointments, balancing your checkbook, or processing your thoughts. Properly termed “cognitive dysfunction” or “cognitive impairment,” this inability to recall information can be extremely frustrating. These symptoms may come and go, but may also be continuous, making school or work difficult or even impossible in extreme cases. People with both lupus and fibromyalgia are even more likely to experience cognitive problems.

If you are experiencing these signs of confusion and memory loss, you may benefit from the skills of a cognitive therapist, either a psychologist or speech-language pathologist. These professionals can help you develop coping techniques and strategies to improve concentration and overcome these difficulties. These techniques may include puzzles, games, biofeedback, using a daily appointment calendar, balancing activities to avoid stress, etc. Cognitive therapists can also explain how to use memory aids and decrease distractions.

These tips may help ease the frustrations of cognitive impairment caused by lupus.

  • Pay attention when receiving new information. Repeat it or write it down. Verify any details.
  • Focus on one task at a time.
  • Take good care of your body; exercise, eat well, and get enough sleep.
  • Learn memory techniques, such as associating a person’s name with an image, or repeating the name several times in conversation.
  • Try to stay organized. One helpful hint is to use a year-long calendar notebook so that all appointments, plans, contact information, and reminders can be kept in one place.