“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Wednesday, May 13, 2009

ME/CFS Awareness: Managing CFS

There is no treatment for CFS. You treat the symptoms; you manage CFS.

I currently do not take any prescription medication. I have in the past, but it was either not helpful or made things worse. Sadly, the medical community has not been my best friend when it comes to CFS.

So, here is what I do to take care of ME (get it?):

1. PACING!!! There is no drug or supplement or protocol that has done more good for me than pacing. My quality of life skyrocketed once I found out that you can not "push through" CFS. I still make mistakes ... and learn my lessons ... but overall, I do pretty well making sure I get plenty of rest between high exertional periods. It has allowed me to go from being a zombie 24/7 to being lucid and functional 3 to 7 hours a day.

2. Formal, scheduled periods of rest. This is a bit different from pacing, I think. Twice a day, regardless of activity level or level of fatigue, I rest for 30 minutes. I go in my room, put on my migraine/sleep mask, set the timer, and just rest. I try to add a little deep breathing and maybe some light visualization for relaxation. But I don't push it. Sometimes my mind races for the full 30 minutes; sometimes I fall asleep. Usually it's somewhere in between. I usually feel much better afterward, but if not, it's a great gauge that tells me I need to slow down a little more.

3. Supplements. I discovered pretty early on that you can be so desperate to get rid of CFS that you'll spend a small fortune to try anything! I use a little more restraint now. My rule of thumb is that it has to either be obviously effective or good for my overall health. At night, I take a multi-vitamin, calcium, magnesium, fish oil, and melatonin. In the morning, I take a mega dose of B12 sublingually, CoQ10, and a B complex. I take .75 oz. of dark chocolate twice a day, after my rests. I have begun taking additional anti-oxidants, including CoQ10 in the afternoon to see if it helps with my afternoon slump. I had been taking NADH, but I stopped for a few weeks to see if it was helpful. I think it was, so I'll start taking it again next week. I'm also going to be testing electrolytes and d-ribose.

4. Exercise. Right now, I do about 15 minutes of stretching daily to ease pain. I am hoping to begin adding 5 minutes of cardio. No panic, just something very low impact that I can monitor and pace carefully -- probably rebounding (mini-trampoline) because it has the added benefit of flushing the lymph nodes and improving the immune system.

5. Diet. OK, I have to admit this is more theory than practice at this point! Although I have made some progress by eating healthy dinners. I have easy, healthy recipes that even my kids can make if I'm not up to it (see my other blog, The Flagging Chef, sidebar). The next step is to cut down on the sugar and other high Glycemic Index foods so I have a more steady stream of energy. Ha! We'll see.

Did I leave anything out?


Renee said...

This is really good, Shelli. I have been putting together a plan for myself and have learned that I expend too much energy on mental activity and that this is keeping me at a lower level of health too. Hard for me to put this into practice but I am trying. I am wondering how the chocolate helps? I have heard this before and am thinking of starting...I have not had caffeine for 20 yrs so it would be a slow start :)

MoonWillow Art Studio said...

Hi Shelli :) I to live with CFS & FM. I have for 10 years now. Thank you for the reminder about pacing. I need to do this more. I tend to try & push through way too much & I am paying for it. I have found that the meds my doc had me on just made things worse too. At least he supported my decision to get off all the meds & try other things. Now I take a handful of supplements that seem to be very helpful. I also have went to a mostly organic & gluten free diet. I blogged for awareness too. If you get a chance, pop on over to my blog & take a peek at

Dusty Bogwrangler said...

Hi, your routine is pretty similar to mine, except you are more diligent about supplements than me. I've been thinking about CoQ10 but as always it's the cost that puts me off.

When I rest I always listen to either a relaxation CD or a story/play from the radio - you can download stuff from the BBC website now. It stops my head going round.

Like you I've found resting and pacing to be the best thing for managing this condition.

Might give the chocolate a go, tho don't know if I can stop at 0.75 oz. A low GI diet is good for removing peaks and troughs - even if you only do it 80% to 90% of the time!

Great post, thanks.

Lori P said...

Great routine! You are indeed managing well. I think your outlook and attitude play a tremendous part as well. Boy, would it be nice to ditch the meds, but Jessie just can't do that. Tried it and failed miserably! She does watch the diet, do pilates every day and walk on the treadmill.