Saturday, January 24, 2015

My ME/CFS Improvements in 2014

I can't believe it's almost the end of January already! Things have been very busy here, my college son is still home and incapacitated by mono that hit in November, and I am behind in pretty much everything. But I finally took some time to sit down and look back at how I did this past year, with respect to my illness, and I was thrilled to see the improvements in black and white!

As many of you already know from past posts, I am a data geek and keep track of how I feel each day with a 1-5 scale (1 is great; 5 is severely crashed). I just jot that number in the lower left corner of the day on a monthly calendar before bedtime. I also track how much exertion I had that day, out of 5 (5 being a lot and 1 being little).  At the end of each month, I calculate a few quick numbers: average of how I felt, average exertion, and % of days crashed (for me, that's a day rated 4 or 5).

This week, I took a look back at all those numbers and put them in my Excel spreadsheet (sorry, I used to be an engineer!), and was thrilled to see the positive improvement in all areas!

How I felt overall improved to an all-time high average of 2.3, better than anytime since I got sick 13 years ago! That's a 10% improvement over 2013 which is really great.

My % of days spent crashed in 2014 reached an all-time low of just 8% on average. In my worst years, I spent 20 - 23% of my time crashed and unable to do anything. My worst month last year was once again October when bronchitis hit, as it was in 2013 (which stinks because I love the fall!). However, in October 2014, I was crashed 32% of the time, while in October 2013, I was crashed a whopping 52% of the days! That's a big improvement. I noticed that this year when I went through that rough period, I had a lot of days that I rated a 3 - where I had symptoms and didn't feel good but was still functioning.

I was also excited to see the upward trend in exertion. In 2014, my average exertion level (out of 5) was 3.7, the highest it's ever been since I first got sick with ME/CFS. My exertion levels have been steadily increasing over the past 5 years or so. In real life, that means I am able to do more, to be more active, and am spending less time lying on the couch and more time living my life.

So, where did all this improvement come from? Well, I keep track of that, too! Each year, I set goals for myself and try to set measurable objectives for each one (here are some examples of my health-related goals from 2013). I also keep track of any new treatments or approaches we have tried.

New treatments or changes to treatments in 2014 that might have helped me improve include:
  • Switching to a Paleo diet in February (if nothing else, this helped get control of yeast overgrowth which I discovered was a HUGE issue for me)
  • Focus on controlling yeast overgrowth - changing the diet, adding more probiotics, adding a bunch of anti-yeast supplements, plus some prescription antifungals when it flared up. We've also tried mouthwashes and even probiotic toothpaste when the yeast flares up. Here are details of our experiences with yeast overgrowth and what has worked.
  • Changing Dosing of Low-Dose Naltrexone - after many years on LDN, we switched to taking it every other day and saw a nice boost in energy, just like when we first started it. Details on LDN and dosing here. We also further refined our dosing schedule for inosine and switched from Rx Imunovir to inosine (sold as a supplement in the US). More on treating immune dysfunction, including use of inosine, here.
  • Increased 5-MTHF Dose - Per our dietican/biochemist's advice, I increased my dose of 5-MTHF (a form of folate) from 400 mcg a day to twice a day. She said that I shouldn't go too high because of my genetic profile but that small increases might help. This has to do with methylation, something we have been focusing on for a couple of years now.
  • Continued to Exercise in a way that doesn't crash me - For the past several years, I have focused on VERY gradually improving how and how much I exercise. The result is improved muscle tone (which helps OI and other aspects of ME/CFS) and improved stamina (which helps everything!). Last year, I improved a small amount on how much I walk (my goal is 3 times a week) and held onto my gains from the previous year to do muscle-building exercise at least twice a week (which I managed about 70% of the time) and starting every day with 10 minutes of gentle, on-the-floor yoga.  I have managed this with the help of beta blockers, using a heart-rate monitor, and listening to my body, going very, very slowly. Exercise has long been a dirty word in our world since it causes post-exertional crashes. This exercise intolerance is a key characteristic of ME/CFS; however, deconditioning only makes us sicker. Newer advice from the top ME/CFS doctors indicates that even the sickest among us can exercise safely and in a way that won't make us crash by following some specific protocols. For instance, if you lie on your back, your heart rate won't rise as much, and you can begin with tiny, tiny leg lifts while in bed. My muscle-building work is all done lying on the ground, and I've really made some gains this way! Dr. Klimas has even produced a series of videos to help explain these concepts and get you started.
So, all in all, it looks like 2014 was a pretty good year for me, health-wise, despite my two months of being crashed this fall. I tried some new things, improved the dosing of older treatments, and continued to make gains with exercise and conditioning. I was more active than I have been at any time since first getting sick in 2002, I felt better on average, and I spent less time crashed. Woohoo!

Next up, I finally need to tweak my goals and objectives for 2015!

How was 2014 for you? Did you try some new things? Did you improve last year or have a worse year?

There are lots and lots of effective treatments available for ME/CFS, including medications, supplements, and lifestyle changes. I have found that nothing helps a lot, but there are a lot of things that help a little...and those little improvements add up over time. Maybe 2015 will be your year to improve!


Beauts said...

That all sounds really encouraging Sue, you must be very pleased. People who are not sufferers will have no idea of what a full time job it is to try and build these gradual improvements, it's great to see some benefit for all that hard work.

Sue Jackson said...

That's a REALLY good point, and something I need to remind myself of, too. I didn't do so well on some of my other goals last year, like those focused on writing, but I need to not beat myself up. Being sick really is a full-time job! Taking care of meds, supplements, doctor's appts, insurance claims, fitting in those small bits of exercise when I have such limited energy...not to mention researching new treatments, trying things, and keeping track of it all.

Thanks for the reminder!


Unknown said...

Your blog is very inspiring. I hope 2015 finds more improvement for you.

Anonymous said...

Just found your blogg. Thanks for sharing. Thankful for ever baby step. So understand that concept!

Anonymous said...

I have had Fibromyalgia (the "F" word) since I was 8 years old, and switching to a paleo diet in my 30's helped quite a bit, especially with the pain. I also avoid many starchy vegetables. Corn was a big trigger and had to go. I used to always feel like I'd been hit by a truck or beat up, and now I only feel that way once in a great while.
Overall, I'm still extremely fatigued, but I'm not constantly bedridden like I used to be for years. I can work part-time (20 hrs/wk) for more than a year before collapsing. I'm beginning year number three at my newest job, and though I feel like giving up at times, I am able to keep going. Fibro flare-ups are rare-ish now. Mostly owing to dietary changes, I think.

Now I'm focusing on controlling yeast overgrowth. So far, I've just modified my diet by going back to eating paleo after a year of bingeing, largely due to job stress (I needed to adjust my schedule and a few other things). I gradually cut out foods that feed yeast in order to avoid a large die-off and potentially triggering the yeast to send out mycelium threads through my gut walls (which it may do regardless). Next I'm going to explore probiotics (specially coated to make it past stomach acid) and non-prescription antifungals.

I'm also going to add a little exercise to my life. I feel extremely resistant to doing so because I'm so tired, but I hear it can help quite a bit. I will start with yoga and a special warm-up sequence I just learned about in the book 'Figuring Out Fibromyalgia'.

There are lots and lots of treatments out there, but I haven't had much money or access to professional health care, so I haven't tried many of them. Also, I've found that the miracle cures I have been able to try out that worked for some people, did not work for me. D-Ribose made my brain sharper but also jacked up my pain levels and did next to nothing for my energy level. Other supplements helped to some degree but not enough to justify the money spent on them. Amitryptiline did nothing for me. Sleeping pills help me with insomnia sometimes but don't make me feel more energized. Antidepressants provided some relief from suicidal thoughts, but that's about it - except for Lexapro, which also sped me up and made me extremely productive, but I had to put up with my hands constantly shaking.

The things I've tried that had the biggest impact were dietary changes and learning to pace myself.

Thanks for sharing your progress. I love the specifics.


Sue Jackson said...

Thanks for taking the time to comment and share your story, Salina. I'm glad to hear that diet has helped. Getting yeast overgrowth under control should help a lot, too - when yeast flares up, I feel exhausted, no energy, brain fog, and very achy. When it is under control, I feel great! Click my link about yeast in the post here to learn more about how to get it under control - yes, diet helps some and you need loads of good quality probiotics. My post also includes lists of antifungal supplements. However, don't discount prescription antifungals, too - I tried EVERYthing else and only got mine under control with medication. I feel great now!

I plan another post on treatments that have worked overall for us over the past 13 years, so watch for that this week or next.