Part 2 of How to outsmart your foggy brain

Supplements for Adrenal Fatigue

So last week I wrote about my recent energy crash and brain fog (which seems to go along with digestive symptoms). I think it has to do with starting school courses again (two online classes). At any rate, the things I tried last week improved my coping, but not enough to ward off the zombie fatigue permanently. So I decided to add some more supplements to the mix. I rechecked my CFS bible ‘From fatigued to fantastic’ by Dr. Teitelbaum and realized I’ve been overlooking adrenal fatigue. He recommends Vit C (500-1000mg), Vit  B5, also known as pantothenic acid (100-150 mg) and licorice (200-400 mg).
I got all three (but my pantothenic acid supplement was 250 mg). I didn’t sleep well but my energy was much better sustained during the day! The downside was the side effects (diarrhea), probably from taking more than Teitelbaum recommended… And my sensitive tummy! Obviously I need to take less and even try to work up to the recommended dosage. Hope that gives someone out there more tools to add to their arsenal!

Update: after two weeks my energy has been much better, so my adrenals must have been zapped!

How to outsmart your foggy brain

Since I began taking two classes my brain fog has become more of a problem. It got really bad this past weekend – I must have had a crash. If I’m honest I was pretty scared and thought seriously about withdrawing. My fibromyalgia first started when I was in school last time- although back then it was a full time graduate programs. I was very worried about all my symptoms, but of course I thought they would get better once I was able to take a break. They didn’t. I have been so grateful for my fairly predictable, although limited, energy supply; having low energy and brain fog is not my most difficult symptom. I know for many people with FM and CFS have it much worse in the fatigue department than I do. If I take my sleeping pills, sleep for 11 hours and don’t over schedule myself, fatigue does not usually bother me. This most recent crash made me worried that if I push myself too hard at school again there may be no going back.
So, I tried everything I could think of and seem to have been able to recover my energy almost back to normal levels. The most helpful thing was taking a daily scoop of my protein powder (25 g) in a berry and greens smoothie. I have also doubled my D-ribose supplement amount to 5 g twice daily.
I have also stopped trying to push through my fatigue and instead have been listening to guided relaxation tracks when I feel a dip. Here are a couple of sites you can stream from for free:

Finally, I have been setting two alarmfor each evening to get to bed on time. One of them just went off so I should cut this short! Hope this gives some ideas if you’re looking for them!

Sleep, wherefore art thou?

ImageLast week I had an appointment with a sleep specialist to get the results of my sleep study. I did this study back in December 2013, and it was a hellish experience. By the time they were done wiring me for the study, I looked like a modern Frankenstein, and it was as uncomfortable as it was unsightly. Before the study I only took half of my sleep aid, because I was determined to ‘prove’ that I don’t sleep well. The first horrible part was being wired to the bed and not being able to get up without the nurse coming to unplug me. Of course I had to go to the bathroom twice that night and both times when I went to get up the wires jerked my head back down! After my neck muscle spasmed, I couldn’t bear lying there in the dark hurting any longer, so I took the other half of my sleeping pill and a muscle relaxant. Unfortunately I still ended up counting down from 3000.  When  the technician came to wake me, I joked  that I had just  fallen back to sleep,  and she replied “What do you mean? You’ve been asleep all night!” I almost screamed. 

At least the sleep study results backed up my experience. Of the 6 1/2 hours of recording time, I slept about 4 1/2. This means that my sleep efficiency was very low, at 64.5% (total sleep time divided by total recording time). The other interesting finding was that I woke up 66 times during the night, or about 14.3 times per hour. The good news is that I don’t have sleep apnea or restless leg syndrome. I also had “abundant slow wave sleep” but minimal REM sleep – meaning that I had a lot of deep sleep, where your body repair and recovery takes place, but minimal dream sleep. Apparently this is consistent with the medications that I take.

Like a lot of other people with fibromyalgia, getting enough sleep is probably the single most important factor that determines my quality of life. In my case, I need to get about 10 to 11 hours of sleep to be able to function the next day. If I don’t, I am miserably exhausted and everything seems to go wrong (pain goes up, mood goes down and brain fog sets in). In order to get enough sleep I take a sleep aid called doxepin (brand name Silenor). It is a low dose of a tricyclic antidepressant that helps me stay asleep for the length of time that I need. Although not as effective as some other sleeping pills that I have tried, I chose this one because it is nonaddictive and I can take it for the long term. I also take my pain medications at night (pre-gabalin and long-acting tramadol) to help me fall asleep. Finally, I take melatonin and a natural anti-anxiety supplement called Relora too.

I think I am lucky to have found a cocktail that generally works. The sleep specialist recommended continuing with doxepin/Silenor. However, she had some interesting advice regarding the length of time that I sleep. She told me that if a person actually requires, say, eight hours of sleep, but they stay in bed for 10, they will not lie asleep for eight and then lie awake for two. Instead, their body will spread their sleep over 10 hours, but the quality of the sleep will be lighter and less restful. This could explain the low sleep efficiency and high rate of awakenings that I experience. She recommended that I gradually try sleep restriction as a means of improving the quality of the sleep that I get. I have to admit that this makes me very nervous, because I am such a disaster when I don’t get my 11 hours. On the other hand, I hate spending half my life in bed. I still have to look into it further but it would mean getting up a little bit earlier every day. I think even making it down to nine hours would make me feel like I have more time to enjoy my days, as long as I can still function. The other key part is to get to bed earlier because the quality of your sleep is better at night than in the morning. I have a lot of trouble getting to bed before 12. It’s ridiculous because I know that I would feel so much more productive getting up around 9 than 11. Part of my problem making myself go to bed early is that I enjoy the company of my partner in the evening and the other part is that after I take my nightly medication I get a little bit ‘high’ – very chatty, impulsive and easily distracted! I think my new top goal has to be bedtime by 11.

Finally, the sleep specialist recommended a book called No More Sleepless Nights by Dr.Hauri. I bought the book and it looks really good so far. I thought I had read everything under the sun about sleep hygiene and relaxation techniques, but I am already learning new things, and I am only on the first chapter. I think I will leave it there for now, but follow up with a post of the most relevant things I learn from this book.

Back to class: Mindfulness Based Stress Reduction


Meditation (Photo credit: holisticgeek)

I am about to go to the second class of my Mindfulness Based Stress Reduction (MBSR) course. In the summer I wrote several posts on reading the Mindfulness Solution to Pain and practicing meditations described in the book.  Mindfulness involves “paying attention on purpose, in the present moment, and nonjudgmentally, to the unfolding of experience moment to moment”, as defined by Jon Kabat-Zinn, founder of the MBSR program. I also posted on research showing how effective mindfulness practice is for chronic pain.

I have really enjoyed doing the assigned “homework” from the first class. The first part was to do a 30 minute body scan from the course CD. (A body scan meditation involves paying attention to different parts of your body for a few moments and observing the sensations you feel). This is the longest meditation I’ve ever done. The practices I have done before were breath meditations, usually only for a max time of 20 minutes. I really like the body scan because I am able to really focus and feel more in touch with what’s going on in my body. I feel like my mind wanders less then when I am doing breath meditation (focusing on your breath). It is very relaxing to have a break from your mind!

Of course, I’m not always in such a good mood when I go to meditate. Before I was meditating when I felt like it, which was usually when I already felt relaxed or calm. The idea of the MBSR program is that you commit to practice seven days a week for eight weeks – as Jon Kabat-Zinn says “you don’t have to like it, you just have to do it”. It sounds a little bit rigid but it’s really important while you are trying to establish meditation has a habit. When you go to practice and you realize you are stressed, agitated, and your mind is wandering everywhere, focusing can seem like the last thing you want to. But that’s when you realize how helpful mindfulness can be! It doesn’t necessarily produce calm every time. It does give you a chance to observe what is going on inside your head. Usually that helps me to figure out a more helpful way of dealing with things then spazzing out, or to recognize stressful patterns of thinking.

One thing I do have to keep working on is not to judge myself when I realized my mind has wandered off or I’m not feeling calmer/better after meditating. As the facilitator of my class says “if you have a mind, it’s going to wander”. You really can’t get into mindfulness with expectations about what it “should” do for you.

The other part of our homework was to try to eat mindfully at least once everyday. It’s really nice to realize how many sensations and moments are available to you if you stop to enjoy them. I love food, cooking and eating. When you realize how many times you just wolf down delicious meals… I always feel like my life is so limited now that I have fibromyalgia, so I think it’s really good for me to realize how much I do have around me to enjoy!

Treatment Burnout

Do you ever feel overwhelmed by all the ‘shoulds’ that come with adding new treatments to your pain management plan?
Do you ever wish there was a willpower booster to get you through treatment fatigue, information overload, and the frustration of feeling like you’ve tried everything, but nothing has worked?

This past month I’ve had a patch of insomnia that has prevented me from making any headway in the various treatments I had been trying. In the spring I started meditating, I have physio exercises, recommended supplements, a capsaicin application regimen for pelvic pain, prescription pills, weekly acupuncture … I also need to do something everyday that has nothing to do with my health conditions, or I go crazy (online courses, going to the museum, audiobooks etc.).

Mary Shomon, in her book ‘Living Well with Chronic Fatigue Syndrome and Fibromyalgia’, says “You probably feel confused, as I was, by all the conflicting. Information, and overwhelmed by all the options you have and the choices you have to make” (p. 3). After a year of trying to get better, this about sums up how I feel.

In addition, my Mom has recently expressed an interest in getting involved in my treatment, and wants to help pay for me to try Dr. Teitelbaum’s SHIN protocol (pay for supplements like d-ribose and so on). This seems like a good idea in theory, but she has all of the enthusiasm and none of the experience of treating chronic pain. That is, she’s looking for a cure and not a management plan; a magic bullet rather than a balance of different approaches. We’ve been on hold about starting because of summer vacations, but I find I’m nervous about discussing it further. I already feel overwhelmed by all the things I should be doing, and can’t imagine starting a whole new protocol on top of it all. But there’s the seduction of ‘but what if this is what finally works!’. And the SHIN (sleep, hormones, infections, nutrition) protocol is an exhaustive list of every naturopathic and mainstream medical supplement or drug you can incorporate to address the different domains. I went to see a naturopath to help implement it, but she has a lot of experience, and of course has her own ideas about what to try.

I think I’m going to take a 2 week treatment vacation. I need to focus on having fun for a little bit. Before that, I’m going to work on making a list of the different treatments that I feel help me most. I’ll work on incorporating them back in one week at a time – or longer – until I have a workable routine that makes me feel I have some control over my situation again, rather than feeling overwhelmed. I’ll have to think about how to incorporate the new ideas and protocols, but I feel they will have to get to the back of the line in some cases (or bud in front in some cases)!

Better treatment at Starbucks than from your GP … something’s not right

Today I went to see a new family doctor. I have been putting off going for way too long. Ever since I got accepted to the pain clinic in my hometown and moved back from grad school to be treated here and live with my partner, I just haven’t bothered to get myself a GP. I feel like all I do is go to appointments – therapy, physiotherapy (physical therapy), accupuncture, pain clinic. It’s hard to volunteer for yet another one.

Anyway, I finally did it out of necessity. I can’t sleep. I’ve tried melatonin, valerian, magnesium, alone and in combo, plus progressive muscle relaxation, sleep music and sleep hygiene. It’s not working and my regular meds aren’t cutting it, so I keep resorting to nytol/benedryl at 1 am.

At her office, the GP came in wearing leggings for pants and a white blouse. She didn’t smile and only stared at the computer. She addressed the sleep problem by saying I need to find the underlying emotional issue and deal with it. She reluctantly said she’d write me a temporary Rx for zopiclone. No mention of any alternative supplements or mind/body suggestions. That’s not surprising but you’d think she’d say something other than if the Rx doesn’t work and I still can’t sleep there’s nothing else she can do.

And honestly, I sincerely don’t want more meds, and I don’t appreciate being treated like I do. You also don’t need to tell chronic pain patients that there aren’t magic bullet cures. I know – I’m still in pain.

I’m also very careful to manage my stress with meditation, some tricks from my old cognitive behavioral therapy group (challenging negative self talk by asking how true or rational it is), – and I’m in therapy. So believe me when I say the only stress I’ve had is a flare up of pelvic pain two weeks ago.

What I wanted to talk about is whether I’ve habituated/developed a tolerance to my meds and if they should be tweaked (like sub something for my flexeril). Finally, sleep disturbance is a SYMPTOM off my illness! Therefore it might be set off by something other than stress, and isn’t like insomnia in healthy people.
But no referral to a sleep specialist was forthcoming.

Her suggestion – see the pain clinic. My problem is that they are so overwhelmed with patients that you get in only every 3 months or so. For urgent issues the recommend that you see – your GP.

At the end she tried to rush me out. I wanted blood work to check iron and B12 (and vit D and thyroid, but I didn’t get that far). She asked me if I eat the right food and said I should continue to supplement. No point getting checked. This is in opposition to everything I’ve read saying you should make sure there are no underlying deficiencies contributing to fatigue and pain.
What a relief to walk into starbucks, get a smile, and receive what I asked for. If the barrista can do it, why can’t my Dr.?