Just Coasting...

My kids are finally both back in school, but I'm still not getting much of anything done and am feeling rather useless.

I'm not horribly crashed, like I need to crawl back into bed and seriously rest, but I've had moderate CFS symptoms all week and am completely lacking in the kind of drive and motivation I need to actually get any work done. I can manage to lie on the couch with my laptop and do various mindless things, like blurt out my stream-of-consciousness thoughts on this blog, pay bills, and check my bank balance, but I've been completely unable to do what I really need to do - write new pitches and send them out to magazines or put together a large stack of insurance claims and mail them. It's like I'm kind of on autopilot, coasting, with absolutely no creative energy at all. It's frustrating, after finally having a quiet house to myself after so many weeks.

I guess it's just like this sometimes, right? I feel like I should be doing more, but I just can't get my brain out of first gear (or I guess it's in neutral if I'm coasting...).

I know I should stop putting pressure on myself and just go with the flow, but this to-do list keeps taunting me. I've tried to do some of the minor tasks, just to feel a small sense of accomplishment. It helps a little, but I still feel guilty, like I should be capable of doing more.

Just writing this makes me realize I'm probably sicker than I've been admitting this week and need to take it easy and stop feeling bad about it. sigh... In my pre-CFS life, I was always busy, always productive and well-motivated. Even after 8 years, it's still hard some days to accept that I can't do more. The past 6 months have been so rough. I hope spring brings on brighter days and more energy.

Third XMRV Study

I'm a little late on this - I was waiting for all the analyses to come out. Last week, another UK study on XMRV and ME/CFS was published. In contrast to the first one from the UK that was conducted by Wessley and his gang of non-believers, this study was conducted by some top UK CFS/ME researchers, including Dr. Kerr and Dr. Gow who both helped to identify the genes involved in CFS a few years ago (I participated in Dr. Kerr's genetic study). That's the good news.

The bad news is that this study failed to find evidence of XMRV in the CFS patients tested. So, the original US study conducted by the Whittemore Peterson Institute has still not been verified. This analysis article from Suzanne Vernon, Scientific Director of the CFIDS Association, does a good job of explaining exactly how this third study was conducted and why it may have failed to replicate the results of the original study. Bottom line is that we still don't know for sure whether XMRV is a part of CFS, that XMRV is very difficult to detect and can "hide", and that additional replication studies are needed.

On the plus side, if XMRV is proven to be implicated in CFS, there is a lot of work going on now to study retro-viruses like XMRV, as explained in this recent article in Science Daily that says a vaccination for XMRV may be easier to develop than for HIV.

On the home front, Jamie said he felt "good" this morning which was cause for celebration! I'm not feeling so good now, but at least I'm home alone in a quiet house - trying to rest. Yet another snowstorm is forecast for tomorrow, with estimates ranging from 4 - 18 inches! Wish me luck!

Movie Monday 2/22

I'm feeling a little better today, emotionally. Thanks for listening and helping me through my black mood this weekend. Your compassion and understanding soothed me. It still amazes me that I can just blurt out how I'm feeling here, and there are so many people who "get it."

Today was a little better for me, but Jamie was still home sick. He got up early this morning, showered and dressed for school, but was exhausted by the time he finished breakfast. Still, today was a bit of an improvement for him. He was able to sit up for a little while this morning and do a little homework.

I'm feeling awful right now because my afternoon nap was interrupted - I rely on that to get me through the second half of the day! I postponed my nap because Jamie and I were watching a lunchtime movie, and I was just dozing 0ff when the doorbell rang. It was a visiting nurse here to take samples of Jamie's blood for the UIC CFIDS study. With him home today, I had completely forgotten that it was scheduled for 3 pm today.

Anyway, with all this downtime, we watched a lot of movies last week:

• We watched Timeline with the kids Saturday night, adapted from one of my favorite Michael Crichton books. It's about some archeology students who get sent back in time to the castle in the Middle Ages that they've been working on in the present. Only problem is that they end up in the middle of the Hundred Years War. It's an exciting and suspenseful movie, not quite as good as the book (they never are!), but we enjoyed it.
• Last night, we watched King Kong - the original 1933 movie - with the kids. They were reluctant to watch a black and white movie, but they enjoyed it once we got into it. When Kong fist appeared, Jamie laughed, "Look at those graphics!" Ken and I explained that there was no such thing as graphics back then, that it was all filmed using models. Really, the special effects are pretty amazing for the time. We'll finish this movie tonight - the kids were ready for bed at 7:30 last night!
• Ken and I watched The Soloist Friday night. The book has been in my want-to-read stack for months now. The movie, starring Robert Downey Jr. and Jamie Foxx, was excellent. It's the true story of an LA columnist who discovers a homeless man playing the violin with surprising talent. He befriends the man and tries to help him with mixed success, but the relationship ends up benefitting both men. I thought it was very well-done, and I still want to read the book.
• Saturday night, Ken and I watched Imaginary Heroes, another dysfunctional family movie! This one begins with tragedy, as a 20-year old swimmer headed for the Olympic trials commits suicide. The movie follows his parents (mom is played by Sigourney Weaver and dad is Jeff Daniels) and brother as each of them tries to cope (in varying but all very unhealthy ways) with the death. As each of their lives spins out of control, family secrets are revealed and eventually they realize that they need each other. Believe it or not, parts of this movie are very funny, in a dark humor sort of way. I really liked the movie, though Ken thought it might not have been the best choice given how I was feeling this weekend!
  
• This morning, Jamie and I watched Invincible on TV. We've enjoyed the 70's soundtrack of this movie for years (I did a review of movie soundtracks a few years ago for Family Fun). It's based on a true story of a poor, downtrodden guy from Philadelphia (played by Mark Wahlberg) who tries out for the Eagles football team (their new coach is played by Greg Kinnear), against all odds (pro football mostly recruits from colleges). It was an inspiring movie with great music, and Jamie really enjoyed it.
• We turned the TV off so that Jamie could do some homework and I could do some writing, but we taped Radio, another football movie, to watch during lunchtime (it must have been football movie day on FX today). This movie is also based on a true story, about a mentally handicapped young man, played by Cuba Gooding Jr., in a small 1960's South Carolina town. The high school football coach nicknames him Radio (he loves radios) and takes him under his wing, involving him in the football team and the school. The community is slow to accept Radio - Jamie was appalled by how cruel some of the kids were to him - but the coach stands by him. The only problem is that our tape ran out before the end of the movie!! Now we have no idea how it ends, and the library is closed until tomorrow. Anyway, up until that point, it was very good.

So, a good week for movies (and books - Jamie read 5 books last week!), though a rough week otherwise. We were also very excited that another new season of Amazing Race started last week! We love that show and tape it every week.

Have you seen any good movies lately?

A Blue Weekend

I'm feeling blue this weekend. It sort of snuck up on me. Friday, I was worn out but looking forward to a weekend with my family. Saturday turned out to be another busy day. I waited too long to refill my Lyme meds and had to go to the drugstore and run some other errands. Ken went to the grocery store to pick up what I had ordered online Friday (yes, I finally did it, but our store no longer delivers; you have to pick it up now). I made soup for dinner and tried a new, easy recipe for homemade bread.

I'm not sure why, but by evening, I was starting to feel down. I think a big factor is that Jamie was still severely crashed yesterday. I can handle my own crashes much better than I can handle it when one of my kids crashes. It's so painful for Ken and I to see one of our boys badly crashed and incapacitated day after day after day and be unable to help him. This one has lasted 8 days so far for Jamie. He thought he felt a little better when he woke up Saturday morning, but by 9 am, he realized he was still exhausted and achy and unable to do anything. He spent another day lying on the couch, reading and watching movies.

We watched a movie with the boys, then Ken and I watched another after they went to bed. By the time he and I went up to bed at 11 pm, I could feel the blackness creeping in. Ken tried to comfort me, and suddenly, I was sobbing into my pillow. I finally took an Ambien, he went back downstairs to read for a while, and I felt even worse for ruining our Saturday evening together.

I'm still feeling down this morning. Jamie's a tiny bit better and is attempting a little school work (he's so far behind now!). The sun is shining, and it's a beautiful day. I know I should feel better, but I just don't. I still feel like I could burst into tears at any moment. What's wrong with me?

I desperately want to go outside and take a walk, but I'm tired and achy, so I know it's a bad idea. I did walk around our cul-de-sac when I went out for the newspaper this morning - the sunshine is so nice (even though we still have two feet of snow everywhere).

I know this is "just" CFIDS, that the depression is part and parcel of doing too much all week, and I'm probably a bit crashed myself. I know all that logically, but I still feel emotionally helpless and fragile. I guess there's nothing to do but wait for it to pass.

A Long Week...and An Award!

Sorry I've been so silent since Tuesday. This week turned out to be packed full and pretty exhausting. Besides the busy start to the week with Mardi Gras, Ken and I had somewhere to go every single evening - I'm used to lying low in the evenings. I also started and finished our taxes in record time by working on them all day Monday and Tuesday (I was motivated to get our refund back fast). And after a whole week of snow days last week, Jamie was home sick - badly crashed - all this week. Poor kid was flat on his back all week (still is). He and Craig both had stomach cramps for about 24 hours, so it was probably a virus that triggered this crash.

So, I've been pretty wiped out the second part of this week. I haven't gotten any work done, and I haven't had even 5 minutes with enough energy to read blogs (sorry!). Jamie and I have been watching old Lost reruns on DVD every day!

And, finally, I have been remiss in recognizing a blog award, The Sugar Doll Award, that Dominique at 4 Walls and a View gave me earlier this week! I'm not sure of the exact meaning of the Sugar Doll Award, but it sounds nice, and I appreciate it! I'm supposed to tell you 10 things about myself, then nominate some other deserving bloggers. It's too bad Dominique already received this award herself because I've really been enjoying her new very well-written CFS blog this past month!

So, I've been thinking of what 10 things to tell you. This is a bit of a challenge because, after 4 years of writing this blog, I've already told you an awful lot! I've been pretty open here, so you already know all kinds of facts about me - how I love reading, camping and the outdoors, and travel, that I'm from Rochester and used to live in New Orleans, etc. So, I've had to dig deep (and in some cases way back!) to try to come up with some things you might not know about me:

1. When I was 13, I decided I wanted to be called Sue (it sounded more mature, I thought), but most of my family still calls me Suzie to this day! I use Suzan for my writing, just because Sue Jackson seemed way too generic, but no one who knows me actually calls me Suzan...which is why I used Sue for this blog.
2. I have a sister who is 6 years younger than I am.
3. I went to England and France with my high school French Club when I was 16. I've been to England several times since then but haven't gotten back to France yet. I'm dying to take my kids to Europe.
4. I took dancing lessons from age 5 to 16, then a few classes in college - tap, ballet, and jazz. I still have the purple spandex one-shouldered jumpsuit I wore to dance to "Fame" when I was a teenager (don't ask me why I've saved it all these years!)
5. I drive a 1992 VW Cabriolet convertible - red with a black roof - affectionately known in our house as "the little red car." I expect it to last forever and put my fingers in my ears whenever Ken suggests otherwise.
6. Ken and I met at work, at the DuPont plant in Louisiana where we both worked. He was assigned to be my mentor when I started there!
7. I love to play games of all kinds. My best friend, Michelle, and I used to play marathon board games - Monopoly games that lasted for days, 30 games of Clue in a row, etc. My kids love games, too (I wouldn't have it any other way!), and my mom and I love to play Scrabble together.
8. I kind of like the vivid dreams that come with CFS. I enjoy dreaming and remembering my dreams, especially dreams of flying (but I don't like chase dreams or pee dreams).
9. I have a degree in chemical engineering from Clarkson University, a small engineering school in remote northern NY, near the Canadian border. My years as an engineer seem like a different lifetime.
10. I love to cook tasty, healthy meals for my family. I really hate when I'm too sick to cook. Cooking Light is my favorite source of recipes.

And I better get cooking now or we'll be eating dinner at midnight tonight!

Thanks for the award, Dominique! I nominate:

• Jo Blogs
• Living the CFS Life
• What's After 29?

What's After 29? isn't a CFS blog, but it's written by Lori, who many of you know for her blog, Living Chronically, about her daughter's struggles with CFS and celiac disease. This blog is just for fun, and Lori has a wonderful sense of humor! I hope you enjoy visiting all three of these excellent blogs.

(By the way, I know from my book blog that awards can sometimes be a bit of a burden if you're not feeling well - having to pass it along and include links, etc. in a blog post - so if you would prefer to just accept it graciously and not pass it along, I understand completely! No problem.)

OK, I am SO ready for the weekend...

(P.S. Moments after I clicked on the Publish button, I found out I was also nominated for the Sugar Doll Award from Robyn at "How Are you?" and Other Dumb Questions. Check out Robyn's awesome blog, written from the perspective of a young woman with CFS. Thanks, Robyn!)

HAPPY MARDI GRAS!!

Today is Fat Tuesday - Mardi Gras Day! If we were still living in New Orleans, everyone would be home from work and school today (and yesterday) - it's a major holiday there. Here, Ken had to go to work, and Craig is at school (Jamie is still badly crashed), but we still celebrate! Craig went to school with Mardi Gras beads on, we had our New Orleans CDs playing at breakfast this morning, and tonight, we'll go to a friend's house for our annual Mardi Gras Popeye's dinner (Popeye's originated in New Orleans and these friends lived there the same time we did).

The party on Saturday was great (check out my Mardi Gras tiara in the photo!). I felt better than I have at any Mardi Gras party since getting CFS - it was a really good day for me, by some miracle. We had about 15 adults here and 6 kids, and we served jambalya, red beans and rice, spicy shrimp, Zapp's potato chips, and King Cake and bread pudding with whiskey sauce for dessert. Food is the focal point for any New Orleans-style celebration!

Zapp's are made in a tiny factory in rural Louisiana and are the most amazing potato chips in the world! They make all sorts of wonderful flavors, but our favorites are Cajun Crawtator and Cajun Dill (if you like dill pickles, you will love these!). They are perfect for those OI salt cravings!! You can order them yourself at the Zapp's website or by calling 1-800-HOT CHIP (unfortunately, they can only ground ship - sorry for my overseas friends - we learned the hard way that the bags pop open like a gunshot with the pressure change of an airplane).

In my pre-CFS days, our Mardi Gras party was a much bigger affair - it grew to about 50-60 guests! We also went through a lot more alcohol in those days (I stuck to Barq's cream soda Saturday night - another local La. favorite), and partied into the wee hours of the morning. Now, everyone is gone by 10:30 pm! Honestly, though, I actually like the party more now. It had gotten so big that it was just too much work for Ken and I. Now, it's just close friends, and we have time to enjoy their company.

Back when we lived in New Orleans, Mardi Gras was a 4-day long party! We'd spend all day and night Saturday and Sunday going to parades and catching beads and cups and other assorted goodies, walking around the city, hanging out in bars, and going to parties. By the time we got home each night (or morning), we'd each be wearing so many beads that it would take an hour to untangle them and get them all off!

We always rested on Monday, then we'd meet our friends on Tuesday morning at 8:30 am at the Popeye's on St. Charles Street, where we'd eat spicy fried chicken and red beans & rice for breakfast! Then we'd find a good spot for the Zulu parade and hope to snag one of the coveted Zulu gold coconuts (no luck, though I once caught some Zulu panties!) We'd go to parades all day, then go home - totally exhausted - by about 5 pm. Wednesday at work was never very productive! Those were good times - I'm glad I got to experience all this when I was young and healthy! This photo is of Ken and I with my mom and her husband, Ed, during Mardi Gras (about 1989?). We always had lots of guests for Mardi Gras!

If you want to catch a glimpse of the Mardi Gras parades from the comfort of your laptop, check out the Parade Cam at nola.com. You can also see all sorts of slideshows and videos of parades and other Mardi Gras festivities at the site.

I guess I better get back to work for now. Hope you have a happy Mardi Gras!

Movie Monday 2/15

Well, we survived our big weekend! Mardi Gras party went great - more about that tomorrow. The boys were still wiped out today after staying up past midnight Saturday. Good thing they had yet another day off today for President's Day.

With our busy weekend, Ken and I didn't have a lot of movie time, but last week's two snow storms left lots of time for family movies!

• We watched Escape to Witch Mountain with the kids last week - my all-time favorite childhood movie, a 70's Disney classic! I remember going to see it at the theater with my best friend when I was 10 years old. We also watched the sequel, Return to Witch Mountain, which I had never seen before. It was pretty hokey and predictable, but we enjoyed them both!
• The boys and I watched The Young Black Stallion today while they were crashed. We'd seen it years ago, when they were little. This one is pretty short, but all of the Black Stallion movies are excellent.
• We watched August Rush with the kids the past two evenings (they were so exhausted Sunday night, they went to bed at 7:30!). It's a wonderful, heartwarming movie about an orphan boy searching for his parents through the magical connection of music. We all loved it.
  
• On Friday night, Ken and I watched Charlie Bartlett, an excellent movie about a teen boy (Charlie) who has been kicked out of every private school in the area and now has to attend public school. After getting beat up (and getting a swirly) the first day of school, Charlie comes up with a plan to become popular - he starts to sell the prescription pills his family psychiatrist gave him to other students. What starts out as an amusing, satirical look at the modern obsession with the quick fix turns more serious. Both Charlie and the movie turned out to have more depth than we first expected.

Have you seen any good movies lately?

What a Week!!

We've had a crazy week here in Delaware, with two record-breaking snowstorms, back-to-back. The governor declared a state of emergency two different times, for three days out of five this week, so we were literally housebound (all of us, not just me!) for most of the week. The kids haven't been to school since last Friday, and schools won't reopen until next Tuesday.

Poor Ken spent three days non-stop shoveling and snowblowing our driveway plus two others in the neighborhood - he's exhausted! I really hate not being able to help. I used to actually enjoy shoveling snow. I grew up in the snowbelt (Rochester, NY), and I used to like to clear our driveway before my dad got home from work. I did go out on Wednesday and tried to "just do a little," but after 15 minutes my heart was pounding so hard I thought it would jump out of my chest! I had to lie down on the front steps. And, of course, I was a bit crashed the next morning (though not as bad as I could have been).

The boys have held up amazingly well this week, even though they've been playing in the snow every day and helping to shovel most days, too. We've tried to stick to early bedtimes, even though there's no school, and alternating activity with quiet times (we played a lot of Monopoly and watched some movies!). Jamie's mildly crashed today, after they shoveled a neighbor's driveway yesterday, but he's not too bad.

Overall, I've been doing a little better the past two weeks, after a 6-month long relapse. I'm finally experiencing a few good days and fewer bad crash days. Let's hope it continues because we have a big weekend coming up - it's Mardi Gras time!

We used to live in New Orleans and have had an annual Mardi Gras party since moving to Delaware 20 years ago. We had to drastically cut back after I got CFS (we used to have 50-60 people attend!), but we've kept up the tradition on a smaller scale and with plenty of help from close friends. This is one of our favorite times all year! Problem is, with the entire state shut down most of the week, my plan to do a little each day is shot. Now we have to try to do all the shopping today (Ken's going to help after work), and I'll have to make the jambalya tomorrow morning. The bakery where I ordered King Cakes was condemned yesterday after the roof collapsed, but luckily, I was able to find another bakery that makes them nearby - tragedy averted!

Well, I've been lying here chugging down a big V-8 in preparation for a shopping trip, so I think I'll try getting up now. Wish me luck!

Update on My Low-Dose Naltrexone Treatment

I'm way, way overdo on this one! Lots of people have been asking me whether I'm still on low-dose naltrexone (LDN) and whether it still helps me. Looking back, my last update on LDN was April 2008, almost 2 years ago! If you're not familiar with LDN, I'd encourage you to read that post as well as this one.

Naltrexone is a drug that has been around for decades, approved by the FDA for use in treating alcoholism and drug addiction. Yes, I know this sounds strange so far! Naltrexone works by modifying the endorphin response in the brain. A couple of doctors discovered that naltrexone, when used in tiny doses, is an effective treatment for all sorts of immune system disorders, including MS, lupus, Crohn's disease, AIDS, and cancer. In very basic terms, the endorphin response causes a whole cascade of positive effects in the brain that help to normalize the immune system. All of this is explained in much greater detail (and much more effectively!) at the low-dose naltrexone website (the website is created and maintained for information purposes only by the doctors who pioneered the use of LDN and is not a commercial site). The results of studies using LDN in various immune system disorders have been amazing.

There have still been no official studies conducted of LDN and CFS (big shock, huh?), but we have a dysfunctional immune system, too, and it does seem to help some people with CFS, including me. There has been a small, pilot study at Stanford on using LDN for fibromyalgia, with excellent results.

As for me, I took LDN for 3 months in 2007 and got worse again when I went off it. In January 2008, I asked my doctor if I could go back on it, and I've been taking it ever since - two years now! As I explained in my earlier post on LDN, this is the only treatment in 8 years of CFS that has helped me significantly. During that same time period, I've also been on anti-virals - first Valtrex and now Famvir (I tried Valcyte earlier but had some serious side effects and had to stop - it's a very toxic drug). From what I've read, anti-virals and LDN work well together, though you can take either separately.

If you're a regular reader of my blog, you know that this past year was rough for me, especially the last six months. So, perhaps you're wondering - as I was - whether the LDN is still helping me. I got the answer to that in December when I ran out for a couple of days...I was worse without it and improved again when I went back on. My lengthy relapse has been due to my recent Lyme infection and treatment, plus exposure to various viruses this fall and winter, and I guess I would have been in even worse shape without the LDN.

I've talked to many other people with CFS who've tried LDN and have heard a wide variety of stories. Some, like me, have improved on LDN. Often, however, I hear from people with CFS who aren't able to tolerate LDN at its regular doses, just as many people with CFS are extra-sensitive to other medications. So, for most people with CFS, it is best to start out with a very low dose of 1 mg (or even 0.5 mg) per day. If it is tolerated, then you can raise the dose gradually. Unfortunately, some people with CFS can't tolerate it even at 1 mg. Typical side effects are vivid dreams and/or disrupted sleep. For most people, these effects go away after a week or two (I didn't have them at all). It's best taken before bedtime (the LDN website explains why).

Most people take low-dose naltrexone in a 3 mg dose. The LDN website says that 4.5 mg is the "optimum dose" for many people with auto-immune disease. I started at 3 mg and have stayed at that dose for 2 years because it works well for me. I tried going up to 4.5 mg and all of my CFS symptoms flared-up for the entire 10 days at that dose. I went back to 3 mg and felt good again.

I know of some people with CFS who have found that 2 mg or even 1.5 mg is their best dose. It takes some trial and error (with your doctor's help, of course).

You need a doctor's prescription for low-dose naltrexone. Not all doctors are willing to prescribe it because this is a relatively new development and an off-label use. Try sharing the information at the LDN website with your doctor. My regular family doctor won't prescribe it long-term and and my sons' pediatrician feels it's too new to try for my sons, so I get mine through my Infectious Disease specialist in NYC (she specializes in CFS).

Since regular naltrexone comes in 50 mg pills, you have to get LDN from a compounding pharmacy. They can provide either liquid or capsules in the dose you need. There are local compounding pharmacies in most areas, and the LDN website lists several that will ship LDN to you. I started out using my local compounder, but they could only supply me with the liquid form (which wasn't very convenient for travel). I now use Skip's Pharmacy in Florida - they're one of the ones listed at the LDN website. They have a lot of experience with LDN and are easy to work with. Just plan ahead for your refills, so you don't run out like I did!

Well, I guess that covers the basics. If you're interested in learning more, please read the LDN website. It is very, very informative. Anyone else out there using LDN or tried it?

Movie Monday 2/9

Yes, I know it's Tuesday already, but Tuesday evening is the first chance I've had to write my Movie Monday summary this week! Delaware got its second-biggest snowfall in history this weekend, so the kids have been home from school all week. Then, I had to drive Ken to an eye check-up in Philadelphia this morning which pretty much took up all of my productive time of day. Another foot or two of snow is forecast for tonight and tomorrow - it's looking like the kids may not get back to school this week at all!

Anyway, we did watch some good movies this weekend:

• We watched Indiana Jones and the Kingdom of the Crystal Skull with the kids. This is the "new" Indiana Jones movie that was released in 2008. We all enjoyed it, though the kids say they still like the original best. I have to say that Harrison Ford still did a good job playing the ultimate adventurer (he's 67 now!) and Shia LeBouf (one of the kids' favorite actors, from Holes) looks like he may be next in line to take on the Indiana Jones mantle....though the Internet Movie Database says that Harrison Ford's scheduled to be in Indiana Jones 5 in 2012! No question that Lucas and Spielberg make a great team.
• Ken and I watched No Reservations Friday night, a light but pleasant romantic comedy with Catherine Zeta-Jones and Aaron Eckhart. Zeta-Jones plays a control-freak chef whose life changes dramatically when her niece enters it (played wonderfully by Abigail Breslin). It was all pretty predictable and formulaic but still an enjoyable way to spend an evening - nothing dark or depressing in this one!
• Saturday night, we watched Rachel Getting Married. Toni mentioned this one last week, and I already had it sitting on my counter from the library! Anne Hathaway plays Kym, an edgy, very unprincess-like recovering drug addict who comes out of her in-house rehab for her sister Rachel's wedding. This is the ultimate dysfunctional family, and Kym is at the center of her family's dark past. Ken didn't like this movie. He said he hated all the bickering and thought it was very depressing. I enjoy a good hard look into the underpinnings of human behavior and family relationships, though, and I thought the movie ended on a hopeful note, that its overall theme was that terrible things sometime happen, but life goes on and healing does eventually occur.

We have another stack of DVDs here for this next snowstorm!

Have you seen any good movies lately?

Orthostatic Intolerance and ME/CFS

(Updated on 7/1/24)

What Is OI?
Orthostatic Intolerance (OI) is a condition that affects over 97% of people with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) - in other words, almost all of us, though you may not even be aware of it, and it also occurs in many patients with fibromyalgia or Ehlers-Danlos Syndrome (EDS), or Lyme disease and other tick infections. OI is an umbrella term that means an inability to maintain a steady blood pressure (BP) and/or heart rate (HR) while upright and includes different conditions, including the two most common in ME/CFS patients: Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH). Both of these conditions exist outside of ME/CFS and are generally understood by some cardiologists and other medical professionals (though the term OI is used more often specifically in ME/CFS). Some people with ME/CFS have just one or the other, but many of us (including both of my sons and me) have both. And some patients have rarer types of OI conditions, where BP goes up or HR or BP jump up and down. It's all OI, an inability to hold blood pressure and/or heart rate steady while upright.

POTS occurs when your pulse rate goes way up when you are upright (standing or even sitting up). NMH occurs when your blood pressure drops while upright. Some people with severe POTS and/or NMH actually faint or feel dizzy or lightheaded, but for many of us with these conditions our "usual" symptoms just get worse and we feel sicker.

Why Does It Matter If I Have OI?
Even if you don't know you have OI, it is underlying many - sometimes most - of the symptoms you associate with ME/CFS (or with fibromyalgia or EDS or tick infections), including Post-exertional Malaise (PEM). It is a big part of what makes those with ME/CFS "crash" or worsen after too much exertion, and it makes all symptoms worse. The good news is that treating OI often results in improvements (sometimes dramatic ones) in all symptoms, allows you to be more active without crashing, and can greatly improve your quality of life.

Our Experiences Diagnosing OI
I read about OI during the early years of my own illness and shortly after we realized that our oldest son probably had ME/CFS as well, but I didn't think that either of us had OI. Neither of us had ever fainted or even felt light-headed, so I assumed it didn't affect us. Besides, both of us had normal blood pressure during routine office exams. I was very wrong.

My son and I went to see Dr. David Bell, one of the world's top pediatric specialists in ME/CFS, now retired, in December 2003. During our visit, he officially diagnosed our son with ME/CFS and confirmed my diagnosis (I'm lucky enough to have a family doctor who recognizes and understands ME/CFS). Then, he told me about OI. I told him I'd read about it but didn't think it applied to us. He was almost certain it did and asked if he could test my son in his office.

I was stunned by the OI test. Although a tilt table test is the formal method most often used by cardiologists for diagnosing both POTS and NMH, they can also be detected in a simple office test (which is quicker, far less costly, easier on the patient, and studies show may even be more accurate, since it mimics real-life conditions). He had my son lie down for 10 minutes, and a nurse took his resting blood pressure and heart rate. Then he asked him to stand up and stand perfectly still, leaning against a wall, without moving at all or even fidgeting or wriggling toes. The nurse took his blood pressure and heart rate every minute. Within less than 10 minutes, his feet turned purple (that's the blood pooling in lower extremities instead of circulating properly), he complained he was very hot (in western NY in late December!), and he started to feel sick. His blood pressure plunged, and his heart rate went way up. Dr. Bell ended the test after about 8 minutes; he said if they kept going, he would probably faint. He also said he wouldn't test me because I'd probably feel too sick to get the two of us home, but he was certain the results would be similar for me.

This is how OI often affects those of us with ME/CFS. Some people do feel dizzy or lightheaded (some even faint), but for many of us, being upright simply makes us sicker; OI worsens all of our symptoms. In fact, for many people, OI is behind most of our worst symptoms.

ME/CFS messes up our immune systems, endocrine systems, and nervous systems. The dysfunction in the autonomic nervous system (the part that regulates basic bodily functions) results in lower than normal blood volume and difficulty regulating our blood pressure and heart rate. Without adequate blood volume, our bodies have difficulty circulating enough blood to our hearts and brains, resulting in many of the symptoms we identify as ME/CFS.


How To Diagnose OI
As I mentioned above, many doctors diagnose POTS and NMH using a tilt table test (TTT), where the patient is strapped to a table that mechanically raises his or her head, a little at a time. Though the TTT is often considered the only way to diagnose these conditions, it has several drawbacks. It's very expensive, requires special equipment (and often traveling to a hospital or clinic), and is artificial, not reproducing exactly what happens in real life. It can also make patients very, very sick because you are intentionally triggering OI.

In contrast, an in-office standing test like Dr. Bell did for my son is quick and simple and can be done in any doctor's office in about 30 minutes or so. According to one study, it may actually be more accurate because it mimics real-life conditions, and the doctor can easily stop the test (as Dr. Bell did with my son) when the patient meets the criteria and/or gets too sick to continue (which is also meeting the criteria). Here are some very simple instructions for an OI standing test, developed by NASA, that you can take to your doctor. Just be aware that in some ME/CFS patients, OI can take a bit longer to show up and 10 minutes may not be enough. Dr. Bell's instructions and tips provide some extra guidance for this test, focused specifically on ME/CFS patients.

Finally, be aware that OI testing is not fool-proof. In fact, a study recently showed that OI testing only caught 47.5% of the cases of POTS in a single test. The study's authors recommended multiple OI tests. For this reason, it is very important for the doctor to observe and record the patient's reaction, as well as the data on heart rate and blood pressure. In my son's case, the purple feet, sweating all over, and general feeling of sickness would have proved he had OI, even if his HR was a few bpm below the criteria for POTS or his BP didn't fall quite enough to meet the criteria for NMH. Dr. Rowe said that a study in his clinic found that it took an average of 29 minutes for NMH to completely show up in ME/CFS patients. So, ask for the in-office test, but be aware of its limitations, and be sure the doctor observes your response to standing. And if you don't meet the criteria during testing, ask for another test on another day (share that study of the inaccuracy of OI testing with your doctor - it found the most accurate results with morning testing).

For more information (including more medical study references to share with your doctor), see my article on the ProHealth website, What is Orthostatic Intolerance and How to Diagnose It.

You may also find another blog post useful, Challenges in Diagnosing OI, which goes into even more detail on some of the problems you might encounter in trying to diagnose your OI and how to overcome them. It covers topics like what kind of doctor to see, how to conduct the test so it is most accurate, and tips for both doctor and patient.

How To Treat OI
The good news is that treating OI is fairly easy and often brings dramatic improvements in all ME/CFS (or fibro or EDS or Lyme) symptoms. It's been life-changing for both my son and I, allowing us to live more normal, active lives again with few post-exertional crashes. Two ways to treat OI are to increase blood volume and/or improve constriction of blood vessels to help circulate blood better. The easiest way to increase blood volume is to ingest HUGE amount of salt and fluids. I can't emphasize this enough! Sodium and fluids are critical for people with ME/CFS (check with your doctor first to be sure you're not one of the rare people with ME/CFS who has high blood pressure).

Next time you feel particularly sick or have a racing heart, drink a large glass of V-8 or other tomato or vegetable juice (lots of sodium!), Gatorade, or even a glass of water with a 1/2 teaspoon of sea salt in it (it's not so bad with lime in it). It won't cure you, but it helps. I always drink a big glass of V-8 juice before I go to the store to help keep my blood pressure and heart rate steady while I'm upright. My sons used to rely on Gatorade, but when the sugar and artificial colors started to adversely affect them, they switched to GU Brew tablets - they are sweetened with stevia, have no artificial colors or flavors, come in different flavors, and you just add them to water to create a balanced electrolyte drink. My sons also both took salt tablets while they had ME/CFS (one is recovered now and one still takes them). We have always used Thermotabs (we buy the 3-pack to save money) but I've also heard from many patients who are happy with SaltSticks - just be sure to take salt tablets with food because some people get nauseous taking them on an empty stomach. See additional links below for all of these products. This is just another crazy aspect of ME/CFS - the rest of the world is trying to reduce sodium intake while we need to intentionally try to make ourselves bloat!

Kids and teens often respond very well to a prescription medication called Florinef (fludrocortisone) (it rarely works well for adults, though it is worth a try). Its sole effect is to help the body hold onto more salt and fluids, and it is used in tiny amounts. Florinef, in combination with LOTS of salt and fluids, was like a miracle for my two sons. In 5th and 6th grades, our oldest son was bedridden over 50% of the time; he had a home tutor for two classes and made it to the other three about 60% of the time. After starting Florinef, he was able to return to school full-time in 7th grade, rejoin band, and play soccer again. For our younger son, whose ME/CFS was much milder, Florinef plus salt and fluids left him symptom-free about 90% of the time; he rarely even had post-exertional crashes after starting Florinef.

A couple of helpful hints with Florinef: you are supposed to start with a low dose and gradually increase, and you may not see any effect at all until you get to the right dose for you or your child. Some children I know started with too high a dose and had side effects but did well with it once they started low and gradually increased. We did that but were ready to give up on it after several months with no effect when Dr. Bell advised raising the dose one more time, to 0.2 mg (2 pills) daily - it was like someone had flipped a switch! When our son got older, he again increased his dose to 0.3 mg daily. Also, Florinef only works with large amounts of sodium and fluids. Our boys drank 2-3 liters of Gatorade every day (now the older one drinks about that much water with GU Brew in it). If one of them skips his electrolyte drink or doesn't drink enough, he feels worse the next day. Finally, Florinef alone isn't enough for some people; Midodrine (a vaso-constrictor) is sometimes added.

Unfortunately, Florinef almost always helps kids and teens and rarely works on adults, but there are other medications that may help adults (and kids, too), particularly low-dose beta blockers. Beta blockers work by blocking certain hormones in order to keep heart rate down and stabilize blood pressure. The first time I took one, my heart rate decreased about 30 bpm in the very first hour, bringing it down to normal levels for the first time in years! That alone allowed me to be more active without going over my limits and causing a crash/relapse. Starting beta blockers was another life-changing treatment for my older son and I (read more at the link). There are almost 40 different kinds of beta blockers available, in a wide variety of doses, so it can take some trial and error to find just the right one for you (always start with the lowest dose), but it is well worth the patience and persistence. More information in my post on beta blockers. They have allowed us both to be much more active, without post-exertional crashes. To learn more about WHY this works and how to use a heart rate monitor to help quantify your limits, read my post on Heart Rate and Post-Exertional Crashes in ME/CFS. Both my son and I now rarely crash from over-exertion and have greatly improved physical stamina. I can now walk for over an hour...with no crash after!

Some medications that you may take for other reasons help OI: for example, birth control pills and SSRIs (a type of anti-depressant) help increase blood volume and decongestants (particularly pseudoephedrine aka Sudafed) are vaso-constrictors. In fact, if I have something to do in the evening (when my beta blockers are wearing off), I sometimes take 2 Sudafed to help with OI.

Besides ingesting more salt and fluids and trying medications, some simple adjustments help, too, like moving your legs around when you have to stand still. I may look strange standing in the grocery store line flexing my leg muscles, standing on tiptoes, and otherwise fidgeting, but it helps to keep the blood from pooling in my feet. Just being aware of OI can help you. This is why you feel better when lying down than when standing up. Keep your feet elevated while sitting whenever possible (we now have 6 recliner seats in our family room, between chairs and couches!). You can also help to improve blood circulation and prevent pooling in the pelvis and legs without medication by wearing compression garments like knee socks (plain or in cool colors), tights (women's and men's) or compression shorts (Spanx work great!) - in addition to the links here, there are more at the end of this post for more options.

For more information, see my article on ProHealth,  How To Treat Orthostatic Intolerance, and for more detail and lots of tips from experience on how to make treatments (especially Florinef and beta blockers) work best for you (they can all take some trial and error), see my blog post, Challenges in Treating OI.

More Information on Orthostatic Intolerance
A wonderful pediatric ME/CFS specialist at Johns Hopkins, Dr. Peter Rowe, first discovered OI in his pediatric ME/CFS patients and pioneered its treatment. There is an excellent article on diagnosing and treating OI written by Dr. Rowe that I highly recommend you read and share with your doctor. The article covers both diagnosis and treatments, including medications, sodium intake, and lifestyle changes. There is also an excellent summary of OI on Phoenix Rising that includes most of Dr. Rowe's information. Dr. Rowe is an amazing person - although he's rarely able to take on new patients, he's very willing to work with your own pediatrician or doctor through e-mail and phone calls. He spent hours on the phone with our sons' pediatrician, helping her to become comfortable treating OI in ME/CFS; she's now our own local expert! Though I highly recommend the article, especially for sharing with doctors, you can also watch Dr. Rowe's webinar on OI. And I wrote my own 2-part article on Orthostatic Intolerance for the ProHealth website that includes the research studies the information is based on, so you can share that information with your doctor (click References at the end of each article to view and print them) - Part 1 is on Diagnosing OI and Part 2 is on Treating OI.

And even with all that, I wrote two more blog posts on Orthostatic Intolerance because although almost all of us have some form of it, it's not always simple to detect it or to find exactly the right treatment(s) for you, so check out Challenges in Diagnosing OI and Challenges in Treating OI, both filled with loads of useful tips based on research and personal experience (from both my family and other patients).


Well, I think that covers the main points, but I urge you to read some of the extra information linked to here. Treating OI can result in great improvements for ME/CFS, fibro, EDS, and Lyme patients. It's one of the top areas that should be addressed, along with correcting sleep dysfunction and immune dysfunction.

Ironically, as I was sitting up on the couch typing this (in 2010, before I started beta blockers), I began to feel hot all over and sick, and I realized my own OI was acting up! I finished this post lying down, with my laptop on my lap. Once you understand OI and recognize its symptoms, you have more control over your ME/CFS. OI symptoms are your body's way of telling you that it can't circulate enough blood to the brain and heart and that you need to lie down. I think I'll also drink a V-8 before I go to pick my son up. Cheers!

NOTE: That last paragraph was written back in 2010. Now, with beta blockers, I am easily able to sit up all day without my symptoms increasing and no longer need that pre-store V-8, though I still sometimes use that strategy if I'm feeling poorly or will be especially active. With low-dose beta blockers, I can even exercise now! I have worked up to being able to manage up to 90 minutes (sometimes even 2 hours!) of walking or hiking at a time - wearing my heart rate monitor to stay below my AT. I can also do some weight training now, which has further improved my condition overall. Crashes due to over-exertion have become very rare for both my son and me.

For more information, see these resources:

Dr. Rowe's OI Summary Brochure (good for sharing with doctors)

My own 2-part article on Orthostatic Intolerance, published on ProHealth (also good for sharing with doctors, as it is footnoted with scientific references)

Heart Rate and Post-Exertional Crashes

Challenges in Diagnosing OI

Challenges in Treating OI

Tips on Using Beta Blockers and Finding the Right One for You

Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you.

A Better Day!

Well, I can't explain it, but I'm feeling better today than I have in a long while. Craig (who returned to school today!!) says that's because I saw my doctor - you know how when you finally go see your doctor, whatever was wrong isn't there anymore? ha ha

I drove to New Jersey to see my Lyme doctor today (I got Lyme in 2008 and have been on antibiotics for 18 months now). Not much to report. He agreed that my rotten January might be a herx reaction (I started a new Lyme medication, Plaquonil on January 2) or it might just be due to all the viral triggers out there, especially with my kids sick lately. He reassured me that the worst virus season is almost over and decided not to increase my dose of Plaqonil yet to give me a chance to feel better first. If it is the Plaquonil, then the herx is a good sign - that it's working and killing off more Lyme. Who knows?

I even made it through a Target shopping trip afterward (!). It's a 90-minute drive to see the Lyme doc, and there's a Target store right across the street (our Delaware Target is 25 minutes away so I don't get there much). We were out of everything, and I managed an hour-long visit. I left everything in the truck for Ken to unload tonight, but I'm still feeling OK. I even felt well enough to make dinner without a struggle for the first time in ages. Of course, I fully expect to pay for it tomorrow, but it felt good not to feel so bad for one day! Let's hope this is the beginning of a trend...

P.S. I've been pretty down lately, with all this couch time. I loved this list of 19 cheering up tips - written 200 years ago! - posted on The Happiness Project. Of course, #5 and #16 are beyond us, but the rest is surprisingly relevant!

This Is the Time to Remember...

One of my favorite songs:

This is the time to remember
'Cause it will not last forever,
These are the days to hold onto
'Cause we won't although we'll want to...
- Billy Joel, This Is the Time

This has been in my head all afternoon. I started to write another blog post, but it'll have to wait for another day. I'm still feeling crummy, and believe it or not, Craig was home sick again today!! He felt great on Saturday and Sunday, then the boys had a day off from school Monday (great timing, after missing 6 days, huh?) A friend took them to see Avatar in the afternoon, and when they got home, Craig said he didn't feel well. I'd hoped that a good night's sleep would perk him up again, but he felt awful this morning. He was so upset to have to miss school again. Both boys have had some stomach upset, and Craig's been nauseous, so I suspect they were both exposed to a stomach virus, though Jamie still feels fine.

Anyway, Craig was feeling down and sick of watching movies after last week, so he asked me to put in some home movies. We watched them all day - and are still watching now! Oh, my gosh - so many memories! Jamie's singing in a second grade concert on the screen now. Best of all, though, are all the movies of Jamie and Craig together - they've been best friends since Craig was born. So great to see them running around the house together, dressed up and playing pretend, Craig repeating everything Jamie says!

We were watching Halloween 2000, and I said, "Look! I took you guys trick-or-treating through the whole neighborhood! That was two years before I got CFIDS." Jamie laughed and said, "Mom, you've divided your whole life into before CFIDS and after CFIDS!" He's right. It's hard not to think this way - CFS has so dramatically changed my life. I'm glad the boys don't think this way. With treatment, they're now well enough to live almost normal lives. I'm so grateful for that. Back to our memories...

(P.S. The photos I included are actually from 2002, post-CFS for me, because my earlier ones aren't digital!)

Movie Monday 2/1

What's that sound? It's silence! The boys have today off, but a friend's mom took them all to see Avatar this afternoon. This is wonderful for two reasons: I finally get a little quiet time and the boys won't be too active the day before returning to school. It's very strange being the parent of two kids with CFS. Most parents are trying to get their kids off the couch and outside; our boys love to play outside and we're always worried that they're being too active, so we encourage them to come in and play video games! It's a bizarre life, isn't it?

Anyway, we watched some great movies this weekend. We've seen lots of thrillers, action movies, and serious dramas the past few weeks, and this weekend was a nice respite with two light-hearted movies:

• Burn After Reading. When I mentioned last week that the Cohen Brothers' No Country for Old Men was a bit dark, Toni recommended their lighter comedy, Burn After Reading. We loved this farcical comedy with an all-star cast including George Clooney, Brad Pitt, Frances McDormand (one of my favorite actresses), John Malkovich, and Tilda Swinton (the White Witch from Narnia). As the Cohen Brothers themselves explain, "It's a little hard to summarize this one. It's sort of about the Central Intelligence Agency and physical fitness and what happens when those two worlds collide." George Clooney adds, "It's a comedy - I think - about some shockingly dumb people..." Both descriptions are apt. McDormand and Pitt are especially hilarious as two of those shockingly dumb people - two fitness instructors who come up with a crazy get-rich-quick scheme. It's filled with mistaken identities, misunderstood motives, and everyone sleeping with everyone else - Ken said it reminded him of a complicated Lucy episode (except for the sleeping around part). This is a great movie if you're going through a rough time and looking for some pure escapism fun! Thanks for the great suggestion, Toni!
• Happy-Go-Lucky. This is a sweet drama that I heard about from Very Short List. It's a UK movie (I saw a Tesco, Jo!) featuring Poppy, a young woman who is the ultimate optimist. Life isn't always perfect for Poppy, but she smiles, cracks jokes, and giggles even in the face of challenges that would make the rest of us scream. Poppy is a primary school teacher with a huge heart who encounters a surly driving instructor who seems oblivious to her sunny disposition. It's a funny, heartwarming story - another nice, light pick-me-up!

Have you seen any good movies lately?