CFS/ME update

It's been a bit over 6 months since I started the Myhill supplement regime along with taking D-Ribose regularly and I am really pleased to say I am getting better.

I hit a plateau after our October vacation and was struggling to make more progress so I reviewed Dr. Myhill's book.  That caused me to visit my doctor and see about getting off the beta blocker she had prescribed for my blood pressure.  Once I was off the beta blocker, I felt better immediately and have been improving since.

I am mostly doing art now but I am able to do the household chores in addition to my studio time and, most days, I still have energy after dinner.  This is a *huge* improvement.  I still feel like a snail rather than the energizer bunny but I can see the progress so I'm focusing on persisting.

Snail #1 in Persist! series

The stress and uncertainty of the current coronavirus situation, especially here in Washington, means that I'm not trying to make big changes now.  I am starting to do regular walks outside.  This has not been on my list of activities for months so that I am doing some is also an improvement.  I'm sleeping well, making art, and my daily energy is growing.  I'm now going to just keep on doing this because it's working.

healing from CFS progress report

I am very happy that I can report my energy level is increasing significantly.  I continue to improve as I implement the supplement regime given in Dr. Myhill's book (covered in the last CFS post) and this post is intended to give some detail about what I've done and what I plan to do next.

My miracle energy boost

Here's a timeline of what I've done so far.

5/11  Started D-ribose in 850 mg capsules because of a research link given in the CFS FB group.  The article recommended both D-Ribose (at 5-6g/day) and one of a list of adaptogens.  I've had problems with the adaptogens so I just started the D-Ribose with some improvement in energy but not enough to make me happy.

5/16 Started Ancestral Supplements beef organs.  I had problems taking the 6 a day they recommend so I did 3.  After a few days, I noticed my nails were stronger.  (My nails have always split easily so this was a noticeable improvement.)  Within a couple of weeks, I noticed my hair & nails were both growing much faster and seemed stronger.  There were also some surrealistic dreams which is related to this supplement being a natural antidepressant according to a friend of mine who deals with depression meds regularly.

 I bought Dr. Myhill's book on July 4.  I switch back and forth between the book and her webpage/wiki because the book is organized and the wiki not so much.  This got me taking All One vitamin & mineral supplement again.  It's in a powder form which I find appealing because I already take a large number of pills a day, mostly supplements of various types.  I ordered it via Amazon because our local food coop doesn't carry it and all the ones they do carry have foods in them that I am allergic to.  *sigh*  I also ordered powdered D-Ribose (see picture above) so I could up my dosage to 10-15g a day.

7/13  Started bigger dose of D-Ribose so switched to powder form.  Ordered a different, less expensive brand of ribose.
7/14  Started the All One rice base vitamins.  Libido woke with a roar!  Which made Jeff very happy.

7/14 - 31 Added other supplements given in Dr. Myhill's book.  Here's the list of things she thinks everyone should take plus a smaller list for CFS sufferers.  Still sort of simmering along and switched brands of ribose after finishing the first batch.


August:  At this point, I can do something every day but still wear out by dinnertime.  This is a big improvement over doing something every other day which is where I was in July.  I spent the month reading and doing small things, giving myself time to heal.

9/3 Finished the alternate brand of d-ribose and started the Dr's Best again.  Wow, what a rush!  Within 2 days, I was surging with energy, able to do 3-4 hours of studio work per day instead of 1-2.  And going out without being exhausted.  All on a lower dose of ribose so I'm sticking with this brand from now on.  Other effects I'm noticing include total absence of carb cravings and lower blood sugar readings in the morning.  I've also had enough energy to go on a couple of short birding trips.

Today:  While I'd like to be an energizer bunny again, I could live happily at this level.  I'm working in the studio 3-4 hours a day easily and waking energetic and early every day.  I still need to take breaks and put my feet up a couple of times a day but that's tolerable.  And I still run out of energy after dinner, especially on days when I'm up before 5am.  How do those morning people do this?

After a couple of weeks of the higher energy level, I'm feeling confident that I can maintain this.  At this point, it's time to add in the rest of Myhill's supplements, specifically the iodine, and increase my gentle exercise.  In 4-6 weeks, I'll post about how those things work out.

New sitting area for creating with CFS

A few years ago, I redid my studio so I was standing while working to accommodate my back issues.  Now, I can't stand for more than 20 minutes due to the CFS problems.  So, I needed a new work area that was seated and while I was it, in the house with the heating & AC so that I wasn't freezing or sweltering during certain times of the year.   This is what I set up along the wall in the master bedroom which is very spacious as the builder was way over 6 feet tall and probably wanted room for a king size bed.

This gives me a desk for art and writing, and I'm going to move a small table for my sewing machine where the cardboard boxes are to the right of the desk.  The bookcases in the corner hold my relevant books and the art resin supplies.  and as you can see below, the boxes for unfinished projects (sewing).

Here's the desk area with the current sewing projects added along with the reference sewing materials.  The boxes on the desk are my new cpap which has yet to be assembled and the ball chair that I will be using in an attempt to not hurt my back by sitting more (left and right respectively).  I look forward to starting a project in here this afternoon and will report on how it goes soon.

Chronic Fatigue Syndrome documentary & help

I have mentioned in passing that I'm dealing with Chronic Fatigue Syndrome.  In the last few weeks, I've had some major improvements and this has been so good for me that I want to share.

It all started with a friend recommending a documentary available on Prime.  "What about ME?"  ME stands for Myalgic Encephalitis which is one of the many names for whatever the heck is going on.  My husband has some valid criticisms of the documentary as a narrative but I highly recommend it for anyone suffering from CFS and anyone who cares about them.  One of the worst aspects of CFS is how isolating it can be because going out and socializing becomes exhausting.  So it gave me hope to see how widespread this problem is and that there is at least one doctor who has been treating it successfully for decades.

Which leads to Dr Sarah Myhill and her book, pictured below.

I have just started reading the book and the first thing that impressed me is her instruction to CFS patients to skip the theory in the first half and go straight to the things to do if reading the theory is difficult due to CFS brain fog.  So I did that.  And I am impressed with how much improvement I've seen in just a few weeks.

What part of her protocol am I doing?  I've upped my d-Ribose from 5g a day to 10-15g.  And increased my B12 to 5g.  This has not only brought about a noticeable increase in my energy but is stabilizing my insulin production enough that my various skin tags have shriveled up and fallen off.  They aren't supposed to do that on their own so this seems significant to me.

For those who don't want to buy the book, I can recommend checking out her webpage.  Here's a link to her section on supplements to take daily even for those not suffering from CFS.

I'll be working my way through the book over the next month or so, and will update my progress.  Because there really are a lot of doctors who believe CFS is all psychological and I know how hard that can be.