Thursday, January 05, 2012

How I Improved in 2011

First an admission:  I am a geek and proud of it!  Yup, I know I'm over-analytical.  I love data!

I knew that I felt better in 2011 than in previous years and was able to do more, but seeing that improvement quantified just tickled me to no end!  So, just in case there are any other geeks like me out there, here are the exciting numbers that prove I have improved...

I rate how I feel each day on a scale of 1 to 5, 5 being severely crashed and 1 being great.  I just jot the number down on a calendar before bed each night, along with any symptoms, and also ratings for my level of exertion and level of stress (since I know these affect me significantly).  I also note changes to medications or supplements on the calendar so I can track whether they help me.

So...drumroll please...I improved from an average of 2.6 last year to 2.4 this past year!  That may not seem like much, but it's a 7% improvement over the previous year and a 12% improvement over two years ago.  Qualitatively, I know that I spend far less time lying on the couch now; I used to have to lie down most of the time most days, and now I only need to lie down when I am crashed...which is much less (keep reading!).

Another way to look at it that I think is more telling is how much time I spent crashed.  From the time I started keeping track 9 years ago, I have averaged between 15-23% crashed each year - that translates to the amount of time I spent severely ill, unable to do anything all day but lie on the couch (a 4 or a 5 on my rating scale).  The annual average is a bit misleading because it hides the really bad months, which occasionally went as high as 50% crashed in previous years.  But in 2011, my absolute worst month was 30% (when I got bronchitis and couldn't get rid of it for weeks), and my annual average was just 10%!  That's a 34% improvement over last year and a 59% improvement over two years ago!  Now that is worth celebrating!

So, you are probably wondering how I managed to improve so much in one year.  It was clearly due to two new medications I started, plus one lifestyle management change:
  • In January 2011, I started taking beta blockers to help treat my Orthostatic Intolerance (yes, you have some form of OI, too, even if you aren't aware of it; it underlies many of the symptoms of ME/CFS in over 97% of patients).
  • In March, I started taking Immunovir, the only immune modulating prescription medication available.
  • I began using a heart rate monitor to help prevent crashes; this might not have had much effect on its own, but combined with the beta blockers, it allowed me to do much more without causing a post-exertional crash.
So, I greatly reduced the number of days I spend crashed on the couch by preventing post-exertional crashes (through beta blockers and the heart rate monitor), and I have greatly reduced crash days due to viral triggers with the Immunovir (which has also helped reduce my allergy symptoms and hopefully - keep your fingers crossed - helped me to finally get rid of Lyme disease).  I will talk more about Immunovir in a separate blog post because it deserves a full explanation on its own.

At the same time, I was able to be more active this year than in previous years.  With the help of beta blockers, I was able to increase my stamina pretty dramatically.  At the start of the year, even a 15-minute walk could leave me crashed the next day, and now, on a good day, I can walk for over an hour (moderately, keeping my pulse rate below my AT) without feeling any negative effects.  I firmly believe that being able to exercise mildly now will further help me to improve my stamina and my overall health.  Just as the bad symptoms can cause a downward spiral, good changes can also cause a positive domino effect.

With all of this, of course, is the caveat that I definitely still have ME/CFS - these are by no means a cure.  I still need at least 9 hours of sleep a night and a nap every afternoon.  I still have to severely restrict my activity level and can only exercise slowly and with great caution.  There are many things a normal, healthy person does every day that I would not even attempt because it would cause a crash.  BUT, I am definitely making progress and doing better than I was a year ago.

So, I am starting out the new year feeling very happy with my progress and very optimistic about the future!  Now if I could only get my son well enough to leave the couch behind.
Hiking in King's Canyon National Park in June 2011


Lee Lee said...

wow! that is exciting when you actually quantify with figures like that!! Well done :)
I'd be really keen to hear exactly how Immunovir has helped? My Dr suggested it a while ago but I have just been to sick to start anything new ...

Renee said...

Great news Sue! I am so excited for you!!!! Keeping a steady improvement level for a whole year is my goal..even if it is 2%....I am excited because I am able to walk 4 minutes steady now and not goal is 10 at the end of this year...anything helps!!! Now to get some muscle back!
So happy for you Sue...this is good news. I like your simply way of keeping track too. It is what I need..the data is helpful I think.

Anonymous said...

Great news, Sue!

I also get a strange thrill from being able to quantify any improvements.


Knittah said...

It's so funny that I was reviewing my data for 2011 today too. Not the dramatic improvement that you have seen, but interesting to quantify things.

Pamela said...

Yipee - this is fantastic!

kellie said...

I learn so much just reading your blog Sue,thank you for taking the time to write it.

The doctors here in Aus are so far behind it is frustrating.
I need to try to get these meds, they must be avail here.
I love how you rate your days, it has certainly given you a positive to start the year. One heart monitor on the wish list.

Baffled said...

This is fantastic news! I'm so happy for you. And yes data is awesome.

NewWorldAntidote said...

Good work! Improvement is always good. I also saw a huge improvement in 2011. I began eliminating all environmental toxins from my life. Worked wonders, but still have CFS. Check out my blog about environmental toxins. Keep it up.

upnorth said...

Very good news Sue - improved is always good even if it's not huge. Thanks for posting. Hopefully this year brings further improvement.

Char said...

Happy to read of your progress! Are your boys using B-Blockers and monitor too?? Wondering about this for my girls...

Sue Jackson said...

Char -

The boys have both been taking Florinef to treat their OI for the pats 6 years, with excellent results. Florinef is what allowed them both to go back to school full-time (my oldest son's current relapse is due mostly to Lyme, not CFS). Florinef often works well for kids and teens (and rarely works for adults), sometimes in combination with midodrine. Check out the link to my post on OI and the link in that post to Dr. Rowe's article on OI.

So, they haven't really needed the HRM because Florinef controls their OI so well.


dominique said...

Wow! That is impressive. ANY improvement is good news. I'm so glad to hear that you have improved so much!

I hope 2012 brings even more improvement for you Sue! You definitely deserve it!

Paula said...

Hi Sue, do you know how beta blockers can help w/ OI? I always thought they would lower blood pressure and make you more dizzy? Did you not take Florinef or did it not work for you? Glad you are seeing improvements and have something to be thankful for in 2011!

Sue Jackson said...

Hi, Paula -

The link in this post explains how beta blockers help treat OI but here it is again:

Its primary effect is to lower HR; my BP has been fine since starting beta blockers. Even though beta blockers ARE used to treat high BP, that doesn't necessarily mean they will lower your BP. They work by blocking adrenaline in the body (hence the name), which signals the body to control BP and HR. So, I think it only lowers BP if you are starting with high BP. That's my understanding - I'm not a doctor.

Yes, I tried Florinef but it rarely works for adults and didn't have any effect on me. It has worked very well for my sons, but it often helps kids and teens.

Hope that helps!

Annie said...

So clever of you Sue to keep all these records....especially when it gives you a concrete improvement to celebrate. May 2012 bring an even bigger one!

chronic fatigue symptoms said...

Its really amazing and giving inspiration to the people. Thanks for sharing the blog with us.

hkd said...

Hi Sue _ thanks to you I just got my heart monitor in the mail today and wow has it been eye opening - of course I knew simple tasks were making me fatigued, but to see the physiological response in numbers in front of you really made me feel less crazy....emptying dishwasher - 99 - 112, laundry - the same - short walk with breaks and very slow hit a max of 140! I was wondering if you have a recommendation of a good CFS doc in the milwaukee area - I am still going to continue with my Phoenix doctor since i saw such immense improvement with the UV Photophoresis Treatments, but want to investigate the heart rate more seriously while I am in Milwaukee - but don't want to waste my time with a cardiologist that doesn't understand the nuances with CFS and OI - any suggestions would be appreciated. Thanks again - this also really seemed to help my boyfriend understand what i mean when I say making a meal, eating and cleaning up is beyond exhausting - since he has a 45 resting heart rate! And I am at 75 lying down! Thanks again for all your information - heather

Sue Jackson said...

Hi, Heather -

Glad to hear you are finding some benefit from the HR monitor. It is very eye-opening when you first wear it, that's for sure!

For most adults, beta blockers are the best treatment approach for bringing your HR down to manageable levels so you can be more active without crashing. The good news is that beta blockers have been around for decades, are very common meds used often, and most doctors feel comfortable prescribing them - this also means they are very cheap! For someone with CFS, you just need to start with a very low dose. It can take a little trial and error to find the right dose and the right med (there are lots of different beta blockers). Some with CFS have good luck with propranolol, a short-acting BB that you take multiple times a day (still very low dose, though); others do better on a BB that works for 24 hrs so you only take it once a day - for people with CFS, you would take it at bedtime. Too much BB can cause fatigue, so that's why you use a very low dose (and if the lowest dose causes fatigue, either cut it in half or try a different one).

So, of course, it still helps to find a doc who understands CFS. You can try checking these databases:

And here is my blog post on beta blockers:

Good luck!


hkd said...

Thanks again Sue!