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From M.E. back to "me"
my journey
Myalgic Encephelomyelitis
Physical therapy & Pacing
using a heartrate monitor
Since having my CPET testing several weeks ago, I have finally acquired my "magic number". It's been determined that my body hits anaerobic threshold somewhere around 100-110 bpm. I've been wearing a heart rate monitor for about a week now. I have the alarm set to alert me when I hit 110, so I can rest. I started out with 100, but I hit that when I stand up, so it was kind of pointless and was going off constantly.
At my last doctor visit, we discussed the potential uses for this new information. Obviously pacing is key. Learning when to stop an activity before pushing my body over its limit will keep my symptoms under control and help me to avoid needless crashes. But I wanted to take this a step further. Having heard the great results Dr. Nancy Klimas has with exercising her patients within this heart rate limit, I wanted to give that a try. Being mostly housebound has made getting out to appointments on a regular basis challenging, so we set up for a program of physical therapy at home. A physical therapist will come to my home at a schedule we determine and will do my physical therapy here until I hopefully reach such a point that I can go to the facility.( If you are similarly confined to your home because of disability, check with your insurance to see if this option is covered and ask your doctor to request the services for you if he or she feels it will benefit your progress.)
Just like with the CPET test, the challenge I face is to learn all I can about the "right" way to exercise for ME/CFS, so I can pass on this information to my new PT who may not have had an opportunity to learn the variables involved in ME/CFS cases or may not fully understand post exertional malaise or how seriously an ME/CFS sufferer can be hurt by being pushed too hard or past their limits. Having both exercised on my own and having done physical therapy in the past when I was not this severely ill, I know all too well how big the set backs can be.
articles & info
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The main thing to remember is that YOU are in charge. The therapist should be following your directions on pace and intensity. So, listen to your body and STOP before you get too tired or feel pain.
The following is the available research and info by experts in ME/CFS and exercise physiology to help you if you're in the same situation. Please feel free to share this page with your healthcare team, so you have all the information in one spot and if you know of an article or research study that I have overlooked, please feel free to contact me.
(see page 20-22 for exercise recommendations)
lots of additional links
videos
Part 3: Implementing an ME/CFS Exercise Program is extremely informative when you get to the point of PT or exercise after your CPET test.
The full length Nancy Klimas video can be rented or purchased on Vimeo
SUPPORT
Having support from a group of people going through the same issues is a great way to stay on track and get answers to questions. Here are 3 places you can find people who are exercising with heartrate monitors.
ME/CFS Pacing with a Heart Monitor
Facebook Group
Go to - ME/CFS Community, create an account and join the Exercise group
I also belong to another great group on Facebook. ME/CFS patients following the Klimas exercise protocols. The group has strict rules and one must be serious and meet certain criteria to be accepted. Please contact me if you would like to be considered. I will put you in contact with the group admin.