Heart Rate Monitoring

As I often do when I'm so frickin busy that I don't seem to find the time to write my own blog entry, here's a relevant article.  I've been monitoring my heart rate during regular activities, and this practice has helped me to manage activities.  By simply PAYING ATTENTION I can do so much to help myself.  With my new med, the LDN, my limits are still changing for the better.  I seem to do alright with ADLs, but give me a flight of stairs and I have issues.


http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope

Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope

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By Bruce Campbell

If you have CFS, you are probably familiar with post-exertional malaise, the severe fatigue that results from doing too much. You can avoid or at least reduce malaise by staying within your limits or energy envelope. This article describes a strategy for staying within one part of the envelope: the anaerobic threshold.

The Anaerobic Threshold (AT)

The anaerobic threshold (AT) is the heart rate beyond which we draw on energy reserves we don't have and activity creates post-exertional malaise. The threshold is often around about 60% of a person's maximum heart rate, though each person is different and an individual's threshold may vary from day to day or within a day.

(Note: Maximum heart rate is 220 minus your age. For a person who is 50 years old, 60% of maximum heart rate is (220 - 50) x .6 = 102 beats per minute.)

There are at least three ways to calculate the anaerobic threshold. I found mine by observing my pulse in my wrist and noting what levels triggered fatigue. People in our program have used two other methods. Some have been given a stress test on a treadmill. These tests are offered in some doctors' offices and in many hospitals and other healthcare facilities.

Other people have used telephone consultations with the exercise physiologists at Workwell Foundation in California. In these cases, the consultant estimates the threshold using a log kept by a patient of their baseline heart rate and heart rate when active.

Benefits of Monitoring Heart Rate

Once you know your threshold, you can monitor yourself to discover when you are beyond your AT. One way to track your heart rate is to count the beats, as I did, but other people use a heart rate monitor, an inexpensive machine available for $30 and up.

Monitoring heart rate has at least five benefits.

First, it offers control. In the words of one person bedbound with CFS, "I craved a boundary, something I could see or touch that would tell me what was too much. My heart rate monitor is drawing my boundaries for me. When I can manage to get up and move around, but keep my heart rate below 105 beats per minute [her AT], then I know I am safe to continue to do so."

Second, wearing a monitor often leads to recognition of previously unknown limits. In the words of one person, "Just getting the heart rate monitor was a huge eye opener for me...Everything put me over the threshold" Another said, "It was quite shocking to find that I operated routinely above my AT."

Third, the alarm feature of a heart rate monitor tells you when you're about to go outside your limits and alerts you to the need to take a break. As one person says, "We set my monitor to alarm when I reached a bit below my anaerobic threshold. That audible heart rate alarm was the best training tool I could have had."

Fourth, awareness of limits can suggest how to change. One person found that just going up a flight of stairs pushed her heart rate beyond her threshold. Her solution was to stop halfway and rest. Another person says that lifting her daughter used to push her over the edge. Her solution was to sit down and have the child climb into her lap. A third person found that many activities put her over her limit. She has found ways to be active with less exertion. For example, she now uses a rolling chair in the kitchen, empties the dishwasher in stages, and uses a grabber to pick up things without having to bend over.

Fifth, the monitor helps educate others about limits and to elicit their help. As one person said, "Using the monitor helped my family to understand and they helped me to stop when it went off." 

Should You Monitor Your Heart Rate?

The people in our program who have benefited the most from monitoring their heart rate tend to be those below 30 on our Rating Scale. They often exceed their threshold doing everyday activities such as those described above. But other people with CFS may benefit as well. For example, finding my anaerobic threshold enabled me determine the level of exercise that I could tolerate without triggering malaise.

If you want to monitor your heart rate, we recommend you discuss the topic with your doctor. As preparation, you can do some informal data gathering. You can make note of your heart rate while resting and also check to see whether your heart rate increases dramatically when you do activities such as standing up, climbing stairs or just being active for a few minutes. If your heart rate when you are active is near or above 60% of your maximum heart rate, you may benefit from monitoring your heart rate and learning to keep it below your anaerobic threshold.

In summary of the benefits of awareness of heart rate, here are the thoughts of one person who has used a heart rate monitor.

"I've made a lot of progress in the past year, mostly thanks to heart rate monitoring, which trained me to reduce my activity to a level my body can handle. By forcing myself to stay within my limits, I have slowly achieved an increase in what I am able to do without going anaerobic."

"I can walk up a full flight of stairs AND walk down the hall AND brush my hair before I need to sit down for a bit. I've learned to be grateful for these small things. They add up to bigger things. I feel well most of the time now and although I can do very little, it's more than I could do six months ago."

Related Articles

Finding Your Energy Envelope
A two-part article describing how to define your limits in detail and ways to expand them.

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Limited Balance

Today I feel like a sick person.  bleh.  I've been reminded that I still need to take special care of myself, that   I still need naps, and that I can't push myself all day everyday.  I need to remember this.

One of the most successful "treatments" for ME/CFS, if you can really call it a treatment, is a concept called "pacing."  Essentially it means, pace yourself, plan ahead for activities, known when you need to slow down, etc.  Carefully managing activity levels really helps.

I think that last thing I posted was about increasing the dosage of the LDN to 3mg, up from 1.5, and it's been a really really awesome thing.  I felt like a not sick person, sortof.  I haven't had perceptible spleen swelling or pain in weeks, and I can get through most days without a nap, although I'm not much good after about 6pm.  If I nap around 2 or 3, I can be good til about 10ish.  I was so completely thrilled to be able to plan a day away from my bed in the afternoon that I did exactly that, everyday.  I needed to test my new limits, see how far I could go, what my body could handle.

It looks like I can go about 3-4 days without a nap before it starts to catch up with me, and if I pay attention one day in bed, or 2-3 with greatly reduced activities and increased rest will catch me up.  I came down with fluey symptoms, headache, swollen head feeling, mild sore throat, soreness, and, well my anterior cervical chain, parotid, jugulodigastric, sublingual glands are usually swollen on a daily basis and they got worse.  Still no spleen issues, and my head is more clear then it used to be when I felt crappy.  OI symptoms are increased, and I noticed (not for the first time) a disturbing arrhythmia last night.    I've often had weird tachycardia, and an occasional arrhythmia...but last night it felt like my heart was flopping around in my chest  It was curious and unsettling.  I immediately began to measure my heart rate on my carotid like I usually would so I felt the disrhythmia in my hands, and for a brief moment I actually felt the artery 'bottom out'   It flattened because there was no pressure behind it for a moment.

Scary.

Really makes me wish I had some health insurance, you know?  A Holter monitor maybe? yeah.

All my symptoms are greatly reduced when I take better care of myself.  And luckily the LDN has helped me to feel much better, go a little bit longer with fewer symptoms.  But the last few days have really helped me to see that I'm still a sick person.

grumble, grumble.  I don't like being a sick person.

but at least if I slow down and give myself the rest I need, I don't have to *feel* like a sick person.  The key will be allowing a positive self-care part of me to remember that I *am* still a sick person and I need to take good care of me.  And then the rest of me can rejoice in not feeling sick all the time.  Cause that's super cool. :)  I had to learn new limits as I got sicker and sicker over the past year, and now that I'm seeing improvement, limits are changing again.  At least the change is allowing me more activity and a happier existence.  One Day at a Time.

Ok, back to resting for me.

Cheers.

Yes!!! LDN is changing my life!

I was driving home from the compounding pharmacy this afternoon after picking up my prescription and I was noticing and appreciating how different the experience was from about 1 month ago before I started LDN.  It was about the same time of day, I was weepy and wiped out, I was so tired that I elected to skip the highway and return home on surface streets...something I do if I don't feel like my reflexes are quick enough to do it safely.

And today I hopped on the highway, turned up the tunes and rocked out, sang along happily to the music, played the steering wheel drums...yeah, you get the picture...and I cried in gratitude.  I feel good.  I really do.

I am still getting really fatigued, and my body needs lots of rest.  Need my naps, watching my heart rate.  still feel some degree of muscle soreness and weakness, so I know I'm still sick.  I haven't beaten the virus, and I'm not cured...but I'm better.  So much better.

I've now been on the 3mg dose for 4 nights and I can see much improvement even from the 1.5mg dose. I'm thinking about going back to belly dance class...I think I wrote about it already, but I'm considering it seriously.  I still won't be able to jump on a treadmill or do lots of exercise...but I can walk to class without have to stop and rest. :) I can study for a couple hours after work, and I can do 5 hours of massage again (although I'm not good for much after that)

I still need to get out of massage and move on, it's still wiping me out, that hasn't changed.  But now I have the confidence that i can keep going, that i can get through school, that I can have the life that I want...mostly.  I don't imagine I'll be backpacking up a mountain, nor becoming a  professional dancer or athlete, and I'm ok with that.  If I can get through my average day, if I can feel happy and confident of my ability to get through tomorrow.  That's enough.

I have enough.  :D

LDN Tx

This is a space-filling model that represents the chemical that has changed my life, naltrexone.  Who'da thunk?  ;) I emailed my doc with a brief version of the improvements I listed in my last blog entry and I got the ok to start doubling the dose as of tonight.  I'm excited and hopeful that there might be more improvements on the horizon. :D  There is a small chance that it may make me worse, but from my research that seems to happen more when and increase to 4.5mg occurs, not with the 3mg dose, which is considered ideal by many, including my doc.  If I got 15-20% improvement with this, can I even hope for another 20%?  That would be so amazing!!! I'm almost at the point where I may go back to bellydance class, I've missed it so much!  I'd still have to be very careful to manage my activity level and to stay within my heart rate limits...so no cardio level of exercise, but I may be able to attend and participate in much of the class.

I simply cannot yet express in words the improvement and positive outlook  I have on life.  I was pretty good before, even when I felt like crap I was happy with it, but this is so different.  I was feeling old for my age...I'm 36 and was at the approximate activity level of a 50-55 year old...and feeling like I had to move so slowly that life was passing me by.  Not anymore.  I feel a part of things again.  Such a weird symptom, but sadly a common one for people with ME/CFS.  I didn't understand it until I was feeling it myself.  It seems that I can handle life now.  Before I knew I could, but now I don't even question it. It is. And it is good.

yea baby.

:D

more in a few days.

Low Dose Naltrexone update

I've been on the 1.5mg dose for a little over two weeks, and I feel pretty darn great.  I estimate a 15-20% overall improvement...I have no words for the gratitude in my heart.  I was devastated this year as I perceived the losses in my life now and the possible losses of function in the future.  I was afraid to challenge myself wondering if it would only make things worse.   Yes, I've learned a lot recently about how to pace myself, to listen to very early warning signs from my body and mind, and to estimate what my recovery time might be.  Most of all, I've learned to honor my limits, and that, instead of viewing everything as a loss, I see this limitations as self-care...and I see each lesson as an exercise in my self-worth and Divine value.  I am perfect.

Some specific benefits I've been experiencing are:

I'm completely off the daily use of any drug to help me sleep. (yes, I've already worked with every alternative option, treatment, and behavior modification out there) On one occasion I took a diphenhydramine to help me sleep through the night.

I feel better first thing in the morning.  This is simply wonderful, and has overall giving me a brighter outlook each day.

Most nausea has passed.  It still happens, but not daily anymore.  Totally awesome.

I'm also off of daily use of NSAIDS.  I've been on them constantly since last December when this last flare-up began.  Because of this I know my own body's anti-inflammatory agents aren't really functioning too well, and I feel it.  I'm having more muscle and joint aches, weird stuff that I can't always connect to specific activities.  I'm achy and it ok.  If I have a tough day at work I can get through it with a single dose of advil or other drug here and there.  It keeps the chronic tendonitis in check that I've accumulated after 8+ years of professional bodywork.

And probably the most awesomest effect of all is that my mind works!!!  I'm faster in class, I'm getting stuff, making connections and following the teacher, understanding the first time instead of silently attempting to plan when I'm going to be able to teach myself the information later. And I've found that when I am exhausted, even when my body is wiped out, my cognitive functions seem to stay longer.  I can still think, and speak, and articulate my thoughts and feelings in sentences and be understood.  I still feel more energetically confident instead of needing my comfy bed comfort zone comfort-ness.

Yes, I still have ME.  Yes, it's still a daily, hourly constant awareness of my condition and ability to cope and to be active that I will likely have for, well...for as long as I need it, I guess.  I'm still sick.  I still need naps and rest.  I'm still conscious of each move that I make and the need to conserve what I have.

I feel better.  and that's enough.

I'll soon be increasing my dose to 3mg which is where my Dr wants me to be for a regular therapeutic dose.  I'll contact her early next week and I'll let y'all know how I'm doing then.  For now, I am enjoying having a brighter outlook on life.  I don't feel left behind.  I feel a part of the world around me.  I feel like I can get through this challenging nursing program.

Yes.

A Dial Down

I had to write an update quickly.  It's been one of those weeks where I'm doing so much that I haven't had much time to post. 

I'm feeling better, in a general and ephemeral sort of way.  I still have all my symptoms, I still get tired in the middle of the day and still need a nap, my muscles still wear out fast, and I'm still having arrhythmia....etc.  but every symptom I have had been dialed down, reduced by maybe one number on the scale.  If whatever was going on was a 5, it's now a 4, or maybe even a 3.  

I'm super thrilled.  My outlook is better, more positive...and it was pretty good before. ;) I notice myself thinking differently, and looking at life with a little more excitement and a I'm feeling more involved with life, instead of feeling like it was passing me by 'cause I can't move quickly enough or think fast enough to keep up.  

I'm also sleeping better, which is going to help on every other level as well. 

Ok, have class now. 

Treatment Anxiety

I had my doctor's appt today, and I received the prescription for Low Dose Naltrexone...in the future to be called LDN. I had to go to a compounding pharmacy, which was actually a nice personal experience, and they even price matched another pharmacy.  A month's script costs only $18.  It could be a whole lot worse, yes it could.  I'm starting on 1.5mg with the intention of a likely increase to 3mg in 4 weeks.

I'm still not certain that I'm going to start it tonight, although knowing me I will.  It's been an interesting experience examining my intentions and purposes for trying this medication.  Of course I hope it will work, but there's a chance that it won't.  I need to be open to both futures.  I don't like the idea of being even more dependent on a medication, but in truth, I already am dependent about 3-4 times a day.  Realistically what will adding one more med at bedtime do...not much on a practical level at all.

I've felt some level of anxiety and even some fear around this, and I've been exploring why.  I thought most of the day that it was because it's something new, an off label use for a drug, an 'experimental' Tx.  then I thought my anxiety was perhaps the perception of dependency....maybe a little.

Before class tonight I was chatting with a friend and I decided I must be afraid that the Tx will actually help, and that I might be able to return to some beloved activities, that my mind might be clearer in class again, and that maybe I'll actually make it through a tough nursing program. (something that's been in question with all the issues I've had this past year) I was certain that I was feeling anxiety around success...that maybe if I felt better then I'd expect more from myself, that I'd have to perform better..or something like that that seems rather silly in this moment.  But it makes sense on some level.

And then after class I realized another key piece of the puzzle.  I realized that a lot of my anxiety was about what happens if I feel better and then get worse again.  I am afraid of further loss, of lower energy, I'm afraid that I'll feel better for just a short time and then it will all go down hill again.  A fear that, considering the relapse-remission cycle that I've been in with this for at least 12 years if not more...seems perfectly reasonable too.  Each time I've done something that helped I thought that I'd *finally* found the solution and things got better, sometimes I can say that I even felt well or healthy for short periods of time, but then I always went into another decline.  This process has been emotionally devastating for a long time in my world, but at least now I can understand it.  Now I can wrap my mind around making the best of each moment and each experience because I really don't know when things will get bad again.  At least the trials of this past year and my declining health have finally led to a diagnosis and a greater understanding of myself.

So with the collective emotional experiences around relapse/remission, I think it's perfectly understandable that I may have some concern around a Tx actually making a difference in my overall health situation.  I am forgiving myself for feeling discomfort and anxiety around this.  I allow the possibility of health into my experience.


On another note, I do intend to journal more regularly about this Tx.  It will benefit me, and I truly hope that others out there who might google LDN and ME/CFS like I did might find this blog and find some benefit too.

I'm told that there are only 2 reported side effects of this drug.  The first is a possibility that I may have some trouble sleeping the first few nights.  I guess I can handle that, although it does concern me because I'm already well wearied from my move last weekend and I haven't yet recovered. I don't want to feel worse because I can't sleep...I still have a life I need to make it through.  The other reported symptom is intense dreams for the first few nights as well.  I'm pretty ok with this one.   I don't have a lot of experience with what some might call nightmares or scary dreams, perhaps because I've struggled with insomnia since I was 12 years old and don't often remember my dreams.  I also hold the belief that dreams are en excellent way for the conscious mind to receive information from the unconscious, the Higher Self, from those who have passed on, and from Spirit guides.  If dreams are more vivid, that's a plus in my world. ;)

Many blessings to all who are reading this and silently supporting me on this journey.  I am thankful for you. <3

Low Dose Naltrexone

I have a check-up with my doc on Wednesday and I'm planning on starting this treatment.  I've done s significant amount of research about this Tx but there's still a lot I have to figure out.  I know that it won't interfere with any of the medications I'm already on and that's reassuring. This definitely falls under "experimental Tx" and so I"m getting used to the idea. I think I'd like to start with a small dose of about 1mg and slowly increase based on tolerance.  Not sure what my doc will recommend.  Apparently some ME/CFS folks have such a low tolerance for medication that they have trouble with this one too. This website says an optimal dose is 4.5mg, but a lot of the research I've done about people with CFS say that they are happier on 3mg.  The only way to tell if it will work for me is by trying it.  Of course I"m excited about a possibility that this might really help me to feel better, to get through my days with less fatigue and especially I'm interested in improved mental focus, reduced neurological symptoms, improved memory, reduced anxiety, etc. This is an experience that may or may not work or help.  It's not up to me.  But good Goddess...what if it helps!!!  I'd feel SO much more confident about school...my life could change dramatically....again. :) I do plan to journal about my experience with it, and I hope that maybe this journal will someday help someone else to make a decision around trying this Tx.  

How does LDN work?

> LDN boosts the immune system, activating the body's own natural defenses.

Up to the present time, the question of "What controls the immune system?" has not been present in the curricula of medical colleges and the issue has not formed a part of the received wisdom of practicing physicians. Nonetheless, a body of research over the past two decades has pointed repeatedly to one's own endorphin secretions (our internal opioids) as playing the central role in the beneficial orchestration of the immune system, and recognition of the facts is growing.

Witness these statements from a review article of medical progress in the November 13, 2003 issue of the prestigious New England Journal of Medicine: "Opioid-Induced Immune Modulation: .... Preclinical evidence indicates overwhelmingly that opioids alter the development, differentiation, and function of immune cells, and that both innate and adaptive systems are affected.^1,2 Bone marrow progenitor cells, macrophages, natural killer cells, immature thymocytes and T cells, and B cells are all involved. The relatively recent identification of opioid-related receptors on immune cells makes it even more likely that opioids have direct effects on the immune system.³"

The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood in the following days. Animal research by I. Zagon, PhD, and his colleagues has shown a marked increase in metenkephalin levels as well. [Note: Additional information for Dr. Zagon can be found at the end of this page.]

Bihari says that his patients with HIV/AIDS who regularly took LDN before the availability of HAART were generally spared any deterioration of their important helper T cells (CD4+).

In human cancer, research by Zagon over many years has demonstrated inhibition of a number of different human tumors in laboratory studies by using endorphins and low dose naltrexone. It is suggested that the increased endorphin and enkephalin levels, induced by LDN, work directly on the tumors' opioid receptors — and, perhaps, induce cancer cell death (apoptosis). In addition, it is believed that they act to increase natural killer cells and other healthy immune defenses against cancer.

In general, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body's normal production of endorphins is the major therapeutic action of LDN.

From www.lowdosenaltraxone.org