Thursday, August 1, 2013

Progress of my physical activity

I've been in a bit of an emotional slump this last month or so, on the verge of tears (and beyond) constantly, and have been trying to pull myself out of it. Between the new crazy sharp prickly leg pain which makes it hard to walk (never experienced anything like it in 5 years), my strained jaw (can only eat soft foods, can't talk much), my back pain which makes it hard to sit, and my bladder issues, been feeling a bit demoralized. I'm trying hard to pull myself back out of it, reading a lot more about CFS and wandering through forums. Haven't found anything useful but it feels good to at least be trying. Anyway, I've been wanting to write about what I've been doing the last half a year but I feel it also requires a lengthy preamble (in addition to the lengthy...amble?). Be warned, it's incredibly long, but hopefully there's something useful in there.

To recap, I got sick 5 years ago with severe mono that a month later flared into just living hell. I figured out it was potentially CFS fairly quickly thanks to the almighty internet. I kept pushing myself (in full denial mode) for about a year and a half until I finally came to my sense and realized I needed to completely alter my point of view and, well, life, if I wanted to even have a hope of getting better. At my worst, I had medical leave for 4 months and I would maybe go for a quick meal out with my boyfriend 2-3 times a week, but the rest of the time I would spend almost 24/7 in bed, overwhelmingly fatigued, brain dead, in horrible pain. My parents, being as amazing as they were, would drive down and bring me food for the week, clean a bit, and do my laundry for me. At some point I had to go back to work part-time to make some money and it was even worse. But with the help of my CFS doc I made, what some skeptics might say, is insignificant progress but was still progress to me. Nothing hugely significant to cause a change in routine or increase what I was doing daily, but things became a tiny bit less burdensome over time and I never had any huge crashes or relapses (knock on wood).

2 years ago:
I had tried doing some form of stretching throughout the 3 years prior, but I could never get it to stick because it made me feel sicker. But around this time I decided to try doing stretches again and see what comes of it. I of course overdid it during my prior experimenting, but in the end I learned how to be incredibly, if not overly, cautious with everything I did and to (sort of) not do more harm. I started with a few minutes of stretching lying down in bed once a week and would closely monitor myself for the next few days and remaining week to see what the effects were. After a 3 weeks or so of seeing it's alright, I increased to twice a week. Then after another 3-4 weeks, I increased it by a few more minutes. And it felt SO good during the stretches, however short they were. I could feel my muscles tingling from the increased blood flow and since there were no major setbacks, I could only hope that increased circulation was helping nourish my sad little muscles.

I increased my routine slowly like I wrote above, a few minutes every month or so and I never did it more than twice a week (and made myself go on strict bed rest immediately after to monitor symptoms). It was so hard waiting a whole month to increase my activity; but I was also too afraid to try anything sooner and it seemed to have benefited me. Sometimes I got this worn out feeling after a few months of doing these stretches and I would take a few months break and start again. But it was never on a strict schedule and I never pushed myself to do what I thought I should be doing, just followed my body's signals. If I returned to baseline after a few days to a week, I knew I could repeat. And if I didn't, I waited til I "felt" right.

I also got a heart rate monitor, which I think is just a god send for us CFSers and tried to keep my heart rate below the anaerobic threshold (here's a site to calculate yours and just generally detailing the benefits of monitoring your heart rate for people with CFS). I picked out stretches from this recovery yoga (or what I liked to call baby yoga) DVD: Yoga to the Rescue - Feel Good from Head to Toe and eventually realized that if I did all the stretches lying down instead of standing up, as some were demonstrated, I got much more benefit from them. My heart rate spikes up quickly when I sit or stand from laying down and stays up. This is called postural tachycardia syndrome (POTS); here's a site about orthostatic intolerance, POTS, and CFS. So I found if I stretched while laying down, I got the benefits of the stretch with less fatigue afterwards since my heart wasn't beating out of control (as much, anyway). Also, as a side note, I found that drinking lots of water has a mildly moderating effect on POTS and just lowering heart rate in general.

The most beneficial thing I did at the time, I think, was adding this one exercise called "the inch worm" from that yoga DVD I linked above. It's not a stretch like everything else I did, but I was having difficulty walking, mostly from post-exertional malaise but also my lower back had this weird, achy, tingly feeling when I stood for longer than 30 seconds. I thought maybe strengthening my lower back would help a little (I kept seeing this exercise on the DVD) so I started doing it for literally 2 seconds at first and added 1 second every month. It was hard to stay patient and only add 1 second every freaking MONTH, but well worth it. I can't seem to find an exact picture or video anyone where, but I'll try my best. You lay on the floor on your stomach with your arms out in front and your hands folded under your chin one hand over the over, like this picture sort of:

and then bend your legs at the knee so that your feet point up to the ceiling (like the picture, but don't cross your legs, keep them right next to each other, parallel). Then you lift your butt into the air using your lower back and abdomen and hold it for whatever period of time you can. My lower back was definitely achy and sore after doing that exercise at first, but it went away. And the plus side? After 3 months of doing this, I somehow was magically able to walk and stand a little more than I could before (not a lot more, mind you) and I was able to start grocery shopping for myself (15 minute trips once a week and I still felt sick and had to rest like crazy after) but I could do it and still return to baseline after serious resting.

Doing all this (starting at 2 minutes of stretching once a week and increasing a tiiiny bit every month), I got up to 15-20 minutes of stretching (plus the inch worm) twice a week. I would monitor my heart rate and if it ever got above my anaerobic threshold, I would lay and rest until it decreased. I still got tired afterward, but I think the only way it worked was that I forced myself to rest quietly in bed for hours afterward (although that's what I did ALL the time, so don't know if it's any different really haha) to recover and also assess the effects of the stretching.

1ish year ago:
My physical state was still awful, but at least better than before. I could do 15 minutes of stretching. I was working part-time still and it was still a struggle, but I was given the opportunity to do more sitting-based jobs so that helped immensely. I had gotten a Fitbit pedometer as a gift (another godsend! you can see charts of your steps online for the day, week, month, year, etc, and track sleep quality, so awesome!) and found I could walk about .1-.2 miles (less than 500 steps) over the course of the WHOLE day without too many bad after effects (which is so very very little). I was also tested for Lyme by my doc with the new Lyme culture test and came up positive. Don't know if I truly believe that diagnosis with all the controversy behind it, but hey, I've been ever so slowly improving under my doctor's care so who am I to argue. 

He started me on antibiotics and about 4 months later told me he wants to me start exercising. Like exercising-exercising. That is his protocol for all his Lyme patients, antibiotics and exercise. He wants me to get to a point where I'm exercising 40 minutes, 3 times a week. I think my eyes must have looked like they were going to pop out of my head when he told me this cuz I was just floored and shocked and thought it was dangerous, stupid, and impossible. The rule was though that I can't do cardio, only resistance exercise (weight-bearing) because resistance exercise has been shown to increase immune system activity. Plus I read this article from way back in 2000 which states a hypothesis that we have impaired aerobic function and a study showing decreased oxygen intake. It says even simple every day actions can easily exceed our aerobic capacity (which, at least with my experience, seems correct). I always wondered by I absolutely hate walking and standing, with every ounce of my being. Because it's cardio (and from the POTS, too I guess)! 

I tentatively started doing 1 lb bicep curls once a week, with maybe 6 reps at a time. That felt ok; I always felt I could do more with my upper body than my lower anyway since my lower body energy gets zapped instantly by walking and I never use my upper body. After some time, I upped it to twice a week, but then I had to stop for a long while because I moved and then injured my back. So let's fast forward.

5 months ago:
I quit my job and moved with my boyfriend for his work and we decided I should take some time off work and focus on my health (this was last September '12). Then, after being flat on my back for months from a weird back injury, I finally felt able to try out his suggestion(/demand) to exercise. I couldn't (and can't, still) do anything with my back or barely with my arms as my back pain would flair up so I focused on leg exercises. Besides the "no cardio" rule my doc imposed, he also said that even if I crash for 3-4 days after I exercise, I should still exercise again after the 4th day and keep going. I was completely terrified to try anything that huge and make myself crash because I had long beaten into myself the mantra "don't overdo it, don't overdo it" and this repeated inside my head every day, every hour, every minute.  It had kept me safe thus far from severe, long-term crashes and I didn't want to risk it.

But, I decided he hadn't led me wrong thus far and I was without job so I could try things out, so I started out on my terms. I created a spreadsheet to keep track of every time I exercised and recorded the the time elapsed, average heart rate, and peak heart from my heart rate monitor that I wore faithfully, along with what exercises I did. After some trial and much error, my start point was 2 squats, 1 set of bicep curls with very low weights, and 2 mild leg stretches laying on the floor after. After every exercise I would sit and wait until my heart rate got below 100 bpm, which was lower than the anaerobic threshold for me but I was being cautious. My doc had said it's ok if my heart rate goes up to 140/150 because over time it will go down, but that sounded way to scary so I just did it my way and did prolonged resting in between.

Of course I felt sick after each session and was forced to stay in bed for a few days. But I had started low for myself, and was able to return to a state where I felt tired but willing to try it again that week. I probably should have started with once a week, but with all my trial and error from the past years, I had a pretty good sense of where I was at and what I could handle without inducing a more long-term crash. I kept at that same level of exercise for 4 weeks (2 squats, 1 set of bicep curls, and leg stretches) and kept track of how I was feeling. I felt pretty awful after each time, but towards the end of the 4th week, I noticed my average heart rate had been slowly going downward a few bpm and my recovery time after each session decreased ever so slightly. So the next time I increased the squats by 1 (3 total!) and the bicep curls by half a set. My heart rate jumped back up at first, but again, decreased a little after 3-4 weeks. I continued doing this for a while until another appointment with my doctor.

When I told him what I was doing, he again emphasized that he wants me up to 40 min, 3x a week as soon as possible, so even if I crashed for 3-4 days, I should keep going. So, feeling a little more confident from the last 2 months, and yet still utterly terrified of feeling more sick, I upped the ante to where I would crash harder and for a little longer. I added lunges, and a few other leg exercises to the mix, and decreased the number for each back to 2 reps. Suddenly I was at a 20 minute workout (mostly it was that long because I rested for 3+ minutes between each exercise, and did mild leg stretches laying down at the end). I kept track of my heart rate still, and when I saw a consistent decrease in average heart rate and had a even slightly better recovery time, I would increase each exercise by one. 

Doing that, I pretty much felt crashed and awful all the time and was constantly in bed feeling sick. But I was able to increase what I was doing none-the-less with strict monitoring and assessment. It was difficult feeling SO sick after having been so careful with my energy limits the last few years, but I feel like it's been worth it. I even experimented with increasing half the exercises by 2 reps instead of 1 every few weeks. I was up to 35 minutes of exercise, with only 2 minutes of break between each exercise, about 12 minutes total. I had been doing up to 11 squats, 11 lunges, and equivalent for 2 other leg exercises I have no name for. This was right before I had to stop a few months ago (to be explained).  It was all such a conflict of emotions too, I hated feeling so incredibly sick but I loved being able to slowly increase my exercise capacity. I had no idea how much relevance any of it had on my abilities in the "real world" though because I was constantly increasing a little, so always felt sick.

[Edit: I realized I didn't add this in before, but something else of note is my rate of improvement and heart rate: I feel like my improvement rate increased as I did more resistance work. Was it a hugely significant increase? Probably not. But I felt it. Towards the end, before I had to stop, I was able to shorten the amount of time I waited before increasing my load (based on heart rate and post-exertional malaise recovery time) and after that I was able to increase my load by 2 more reps whereas before I was only increasing by 1 each period. Additionally, my resting heart rate has lowered by 5-10 bpm compared to before I started this, which is great because it is crazy high!]

Then, I started having this horrible new pain I had never experienced before in 5 years of CFS in my legs (and later in my arms from the bicep curls). It was difficult to walk because there was this shooting, prickly pain on the inside of my legs and I couldn't even straighten my knees. After stopping exercising, it's slowly went away, though it still flares up once and a while for no reason and no one (of course) has any answers for me. It's been SO frustrating because I feel like I've made progress through this exercise program. Small progress, but once I stopped I could tell I could do more than before. I've been to the airport a few times since and I handle it better than I did before. I'm up to .7 miles over the course of a day of walking without symptoms afterwards. It hasn't been much of an increase, but in a life with so little, even a little something is everything. I kind of went into a little depression spiral afterwards because I finally felt like I had hope to beat this thing if I just kept slowly, methodically, carefully working at it, but now...I don't know anymore and will have to go back to just accepting things as they are. 

Anyway, that's where I am now. Still unemployed, but able to sit for most of the day at least by the computer and accomplish some things. I can go out and run some errands 2-3 times a week that don't require much walking, as long as I stay within my .7 miles and spread it out over the whole day. I still have to rest from the walking, but at least I can sit without worry. As long as I keep to these restrictions, which I'm not so great at, I experience so much less of the CFS symptoms than before.

I know exercise is a completely taboo word in the CFS/ME community and I used it with much hesitation here. But, where I started would definitely not be considered exercise by the general public. 2-3 minutes of light stretching 1-2 times a week? To my old self, that would be nothing. To my new self, it is everything and more. I think exercise can mean anything you want it to, depending on your abilities. Just like a few minutes of stretching once a week was exercise for me. Also, I think stretching is of the utmost importance, no matter what, even just stretching your fingers, hands or arms for 30 seconds. From the core of my being, I believe it's essential to keep our sad little muscles going, even if it's not much or very often. And the whole resistance exercise thing completely threw me for a loop. I felt awful afterward, but somehow it helps a tiny bit, who knew. I mean, I've seen some people's website who said they improved with weight lifting and that falls in line with this I guess, but I always just thought that maybe they weren't that sick in the first place or something else was wrong with them. But now I kind of understand.

So, that is all. I'm hoping to somehow solve this random, new and unusual pain so I can get back to it and go up up up, slowly slowly slowly. It's not something I've encountered in all my CFS readings before either, but if anyone's had any experience with this, please let me know! Sorry for the long post and I hope everyone's doing well out there in bloggy land!

Friday, June 28, 2013

Vendor website for arts/crafts by the chronically ill?

So, to start, an update I guess. Feeling pretty down lately, my stupid jaw is not getting much better (can't open much to eat or talk) and my legs still hurt. Can't do much of anything and it's been putting me in total panic mode! I can't be on antibiotics indefinitely and I'm missing primo opportunity to make myself better. Sigh. I spend my days heating my jaw and don't know what else to do with myself. Hopefully things right themselves soon!

Anyway, I just found a pretty nifty site that (partnered with National Geographic) sells art, furniture, jewelry, etc by individuals from poorer communities all over the world (Mexico, Ghana, India, etc). It's philanthropic in overtones since you're supporting these people's livelihoods. I don't know how much they take off the top, but it's still a cool idea (and plus I love international wares!). In case anyone's curious, it's

But looking at it gave me an idea. I know some people who are ill have taken up arts and crafts as a way to spend time and, well, help feel fulfilled in some way. What if there was a website for those that are ill to tell their story and sell their craft to support themselves somewhat? They could keep the money or donate it to a charity, their choosing. Does anyone know if something like this exists? And if not, anyone have any thoughts on whether this is viable? I've also been considering a career change to something web-based (design and web programming) that I can do from home, and this would be a great project to work on if there's merit to it.

If anyone would be kind enough to share their thoughts, I'd much appreciate it!

Thursday, June 6, 2013

Breaking down....and building back up?

Ugh, I am SO incredibly frustrated right now! I feel like my body is falling apart. My back is not better from the whiplash; I can't sit up from laying down without pulling it, can't lift things, can't do anything repetitive or weight bearing with my arms/back essentially. I've been trying to eat more fruits, veggies, and nuts and in the process strained my jaw from chewing too many hard things. So now I officially have a temporomandibular joint (TMJ) disorder and can't open my mouth very much, can't eat much, and can't talk for more than a minute without reaggravating it and lots of pain. My digestive system is apparently on the fritz since blood tests are indicating I'm not absorbing my vitamins and minerals properly (malabsorption?). And because of that I'm low on essential nutrients for proper function of well, everything. But currently it's manifesting as lots of tendon pain in my legs that won't go away! Oh, yeah, and then there's my interstitial cystitis which leads to my painful bladder. All of that on top of the usual fatigue and muscle pain. Joy.

The thing is, I can deal with it. I've dealt with it all in stride and everyone with CFS and Lyme and whatever has about a billion things wrong with them. The really frustrating part is that it's preventing me from doing what has been helping me inch towards feeling better these last 3 months. I've FINALLY found a path for myself that I can see potentially leading to full recovery (more on that later) and my body is just failing me and not allowing me to go down that path because I have to rest and fix all these injuries before I proceed. I'm just about ready to rip my hair out! I guess things just can't be that simple.

So, I have to take a deep breathe. Be OK with taking it easy in the moment. A few+ months off won't make a big difference in the big picture, right? Especially relative to the 5 years that's already passed. Sigh. Sometimes I like to think of it as my body having to break all the old dysfunctional parts down to build up the new and better. Too bad that's not what's actually happening, but it makes me feel better :) At least I'll have energy/time to be on the computer now and take online classes...and can re-aggravate my carpal tunnel while I'm at it ;)

Hope everyone's doing well out there in blog land!

Monday, May 6, 2013

Nutrition Talk

I've been a terrible blogger, and a terrible blog reader the last few months. I've been trying out a new "exercise" regime and spend pretty much all my time in bed recovering, with the usual burning, tingling, aching muscles and extreme exhaustion, etc. But...fingers seems to be doing something positive for me despite the crashing. I keep wanting to post about it, but can't find the motivation/energy for the long blog post that will inevitably result. So, instead I'll just share an interesting talk I just watched recently. While I'm wary about claims of broad cures for mysterious illnesses, the dietary suggestions in this talk sound like something I'd love to try out, though it sounds SO hard (9 cups of fruits/veggies a day...yikes!). The talk is only ~15 minutes long and worth a listen.

Hope everyone's doing well out there in the blogosphere!

Wednesday, March 13, 2013

Linking Lyme Disease to CFS?

I've been hatching a bit of a scheme lately. I haven't taken any action on it yet, but I thought I'd put it out there at least, to get some feedback and to motivate me to take the next step. After being diagnosed with Lyme disease in April 2012, pretty much out of nowhere (my CFS started with mono almost 5 years ago and I have no memory of tick bites ever), I've been thinking maybe Lyme is more common in CFS than people think. Chronic Lyme symptoms are very very similar to CFS: fatigue, neurological problems, cognitive problems, joint/muscle pain, etc etc. It's a disease that presents with very heterogeneous symptoms. My CFS doc says that 60-70% of his patients that come to him with CFS end up having Lyme, and Fibromyalgia has been linked to Lyme disease in his experience. Even if the numbers are not as high as that and only even 10-20%, isn't it still worthwhile to find out exactly what is and isn't afflicting us??

Herein lies the problem: finding out. The problem with testing for Lyme is that the widely used tests are indirect (ELISA and Western blot) and come up with many false positives and, more importantly, false negatives. As I understand it, the longer the person is out of the acute/early stage of infection, the less likely you are to come up positive on the indirect tests, especially the ELISA since it measures antibodies and if your immune system is shot to hell you won't be producing many antibodies for Lyme. But, there is a new test that's come out in the last few years that is more direct. It's a blood culture that actually grows the Lyme bacteria. It takes 3 months and, unfortunately, costs $600 (yikes). It hasn't been validated yet by an independent source, unfortunately, which does seem a little sketchy so I'll probably wait until that's done to hatch my plan.

That said, here is my idea. Well, 2 ideas:
  1. Contact the lab (Advanced Laboratory Services ) that does the Lyme tests and see if they'd be willing to add CFS questionnaires to their future research project (described in my post here). Somehow I don't think this will pan out but I can try.
  2. This, really, is my big idea. There are many websites out there that do crowd funding (raising money from the internet goers at large), especially for charity work (see here for examples). I would like to get in contact with someone from a CFS/ME non-profit in the US (since the lab only currently tests in the US) and join forces with them (because why would anyone listen to little ol' me). Then, we can start a research project to be funded on one of those websites, and have individuals with CFS submit detailed questionnaires and medical history (if that's legally allowed) and get tested for Lyme disease.
There will be a lot of questions that arise from the crowd funding project, I'm sure. Who gets selected and how, how many people, etc. And to make this a real research project, you'd need a "control group": a group of healthy individuals who also get tested for Lyme. There probably won't be enough money for that too unfortunately. 

The goals for me are two-fold: 1) do a research study to see if Lyme really is prevalent in the CFS community, and 2) just get as many people tested as possible because it's so damn expensive. Two birds, one stone. And maybe, just maybe, if the results are interesting, it'll get some attention. And then someone else with actual money might take this on. I'm geared up for a revolution here ;)

If anyone has any thoughts or suggestions about this, or even connections at a non-profit who could chat with me and potentially get involved, that would be great. Thanks all if you made it through this incredibly long post :)

Friday, February 22, 2013

The trickiness of cortisol

I've been avoiding the computer a bit, my carpal tunnel has been acting up again. But I had this revelation recently and I thought I'd share. I've been feeling recently that my improvement from the antibiotics I've been taking for my Lyme has plateaued a bit and I'm very frustrated. I was expecting to take time off from work and thus feel better faster, and it's just not happening (I'm going to lay partial blame on my messed up back for this too). So I've been racking my brain trying to think of other things I can try and I had this memory pop up from my bio classes in college. High levels of cortisol (adrenaline) impair immune function. My doc tests my cortisol levels every 2 months and I, more often than not, come up higher than the range. He gives me supplements to take (magnolia bark extract, ashwagandha extract, phosphatidylserine, l-theanine) before going to bed so that my high cortisol levels don't mess with my sleep as much. They help a little I think, but my body's just too stressed out! So, I need to start finding ways to lower it on my own. I keep telling myself I should try meditation (meditation lowers cortisol levels), and maybe I've found a concrete reason to get myself to do it this time! I have another appointment coming up in mid March. Hopefully I can keep myself on track!

Also, it's important to note that while high cortisol levels have been noted in people with Lyme and even chronic fatigue syndrome, that's not always the case. Sometimes infection or whatever overload your body is experiencing, can cause your adrenal glands to shutdown. Case in point, when I first started seeing him, I had horribly depressed cortisol levels and he started treating my high reverse T3 with bioidentical thyroid while monitoring my cortisol levels, they slowly became more normal (and now are too high!). [Also important to note, the interplay of thyroid and cortisol hormones, but that's another post for another time.] And having depressed cortisol levels is bad too because your body does still need a balanced level of cortisol to keep your immune system, and just body in general, running optimally. So, this cortisol stuff is tricky! If you haven't had your levels tested, I might recommend it. And even if you're within range, but still in the high range, consider trying things out to get them to lower!

Anyway, sorry I've been MIA lately and haven't been keeping up to date with people's blogs (stupid wrist), but I hope everyone's doing as well as could be!

Friday, January 18, 2013

Free Lyme culture test for certain states - for research

Let me first start with a fun fact I got today from my CFS doc during my appointment:

60-70% of the patients that come to him with CFS and Fibromyalgia turn out to have Lyme disease. 

Quite a shocker, let me tell you.

Which leads me to...saw this article about how Advanced Laboratory Services are starting a research trial to create a faster, cheaper Lyme culture (faster than the $600 test that takes up to 3 months that they currently have). They run your sample through both the full, well-established test, and through the new methods as part of the research study free-of-charge. Someone else posted on the forum where I saw the article that only certain states qualify (i.e. your doctor has to be registered in that state) for the research trials:

CA, CT, FL, IA, MD, MA, MN, NH, NJ, OR, PA, UT, VA, VT and W

 and they're still in the process of sorting everything out, the testing hasn't begun yet.

The first step seems to be to have your doctor fill out a form and contact Advances Lab Services. From the article:

Regular collection kits can be ordered by practitioners online by clicking on “Order Kits” (tab at top right). Click here for website.  Research kits will only be sent after a practitioner has registered with the lab and each patient has been pre-qualified – there is a form that the lab will provide to interested practitioners.  Practitioners can email the lab at

Advanced Labs will only talk to doctor's offices, so it won't do any good to talk to them directly unfortunately. I hope this is somewhat helpful to people! If you need a doc to write you a test (they're in California, but you can reside anywhere to see one of their doctors--they do Skype/phone appointments and such-- my CFS doc's clinic can provide a doctor. However, they're out of network and might not necessarily be covered. but one appointment is probably cheaper than the original cost itself test itself, if you can get it free.