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How to Help Your Doctor Understand ME/CFS Disability

  [ 56 votes ]   [ 7 Comments ]
By David S Bell, MD, FAAP* • www.ProHealth.com • January 11, 2012


This advice was first published in Vol 1, #3 of the Lyndonville Journal - a bi-monthly newsletter from Dr. Bell's medical office that preceded the Lyndonville News (DavidSBell.com). It is reproduced here with kind permission.*

The Difference Between Activity Limitation and Fatigue

The central aspect causing the disability of chronic fatigue syndrome (ME/CFS) is elusive. Patients say that they have fatigue, but physicians do not understand what is so bad about that. Nearly everyone has fatigue. Certainly physicians have fatigue.

Whatever it is that patients with CFS have is different; what is entirely unique is not the fatigue but the activity limitation.

When patients with CFS appear in front of a physician they look well, and this is a key to the diagnosis of the illness. When they explain that they have fatigue or are tired all the time, the physician waits for the next step because this doesn’t count. Everyone is tired. So what.

“No, you don’t understand,” the patient says. “I’m really tired.” And the physician begins to think of other things or begins a perfunctory examination to get on with it. The visit is essentially over, and the patient perceives that the physician does not believe them.

It is not all the physician’s fault.

What the patient must convey is that regardless of the words explaining why, the main problem is the activity limitation.

• They get up in the morning but have to rest before getting breakfast.

• They would lie on the couch for 20 minutes before attempting a shower. Now that’s fatigue.

• They can go out shopping, but only to the corner store for a loaf of bread because going to the supermarket is too much.

The reason for this restriction of activity might be fatigue, but by showing the effect this symptom has on their life the symptom becomes meaningful. The tired physician who works 16 hours a day will stop and listen about fatigue so severe that it prevents a person from going out of the house.

It is very important for the patient with CFS not to exaggerate the degree of fatigue. Patients tell me they are completely unable to leave the house, not realizing that they are sitting here in my office looking just fine. Sometimes, to emphasize how severe the fatigue really is, a patient will stretch it a little, and this is very confusing for the physician – it encourages the distrust.

I think the best approach to really understand the impact of fatigue on a person’s life is the Activity Diary, an accurate record of what actually happens during a typical week.

Keep it simple, and it is best if the patients push their activity as much as possible. For example, no physician will believe the diary that says: “Jan 1: stayed in bed. Jan 2: bed; Jan 3: bed, brushed teeth.” The trick is to have detail… but not too much.

_______________

A typical Activity Diary might read:

Date: Jan 1                                                       Symptoms

Up 9:30 AM: rested/light activity to noon.              Tired but OK

Noon: fixed lunch, went out for mail.                      OK

1 PM - 3 PM:  light activity around house               Pretty good

3 PM -  4 PM:  sleep

4 PM - 5 PM:  went to supermarket                       Joint & muscle pain worse; developed
                                                                          severe fatigue, headache, nausea;
                                                                          exhausted
6 PM-7:30 PM:  Resting in bed

7:30 PM – 9:30 PM:  Dinner, TV, light activity

_______________

There are several things that would catch the physician’s attention.

• First, it is detailed enough to seem reasonably accurate.

• Secondly, it demonstrates that not much happened during this particular day.

• Thirdly, it showed that the person tried to do something and related the symptoms which cut this activity short.

Going to the supermarket should not be considered excessive activity, yet even that is difficult. Most important, no one with good health who is well rested because of a relaxing day lounging around the house would go to bed after coming home from the supermarket.

Perhaps this one little detail might convince the physician that you are really talking about fatigue, not laziness.

Another approach that I have used in the office for nearly 10 years is an estimate of the different categories of activity during the day. The form I use in the office is as follows:
 
______________

Daily Activity Ratio

Please list the number of hours spent in each of the following categories for an average day, a ‘good’ day, and a ‘bad’ day during the past month (total for each should add to 24 hours).

Activity                                          Average    ‘Good’     ‘Bad’ Day

a. Total hours sleeping:                   ______     ______     ______

b. Rest but not sleeping:                 ______     ______     ______

c. Light activity while sitting or
lying down: (reading, TV, etc.):        ______     ______     ______

d. Moderate activities in house
(light cleaning, desk work, etc.):      ______     ______     ______

e. Moderate activities out of house
(work, walk, drive, shop, etc.):         ______     ______     ______

f. Vigorous activities (exercise,
heavy cleaning, sports, etc.) :         ______     ______     ______

TOTAL                                            24 hrs        24 hrs       24 hrs

How many days of the past month would you consider ‘average’? _____

How many days of the past month would you consider ‘good’?      _____

How many days of the past month would you consider ‘bad’?        _____

____________________

What is very interesting about this method of activity rating is the constancy of the activity of a person with CFS over months and years.

I think this constancy is more diagnostic of CFS than any description of a very bad day. Even with the ups and downs characteristic of CFS, the activity level rarely goes up to normal.

Most healthy people have 12 hours of inactivity (sum of a, b, and c) and 12 hours of activity during the average day (sum of e, f, and g). But:

• People with severe CFS have 1 to 2 hours of activity (e + f + g);

• People with moderate CFS have 4 to 6 hours of activity;

• And people with mild CFS have 9 to 10 hours of activity.

It is important to communicate to your physician not just the presence of the symptom fatigue, but the importance of this symptom on your life. Whether "fatigue" is the right word or not, it is the effect of this symptom on your life that is important. It is this effect – the activity restriction – that seems to mess up a day.

But using the inappropriate word ‘fatigue’ may also mess up a day.

Don’t be pushy with your doctor. Do not expect that on the first visit the physician will understand CFS fatigue.

It is difficult to comprehend the complexity of this illness or any other with a single visit. But over time, the seriousness will become clear to your physician and the diagnosis understood. So lighten up, and give your doctor a break.

- Dr. David S Bell, MD, FAAP, May 1999

___

* Reproduced with kind permission of the author from the paper archives of the Lyndonville Journal, © Bell, Pollard, Robinson, 1999-2000. All rights reserved. See Dr. Bell’s website to sign up for its e-successor, the Lyndonville News (www.DavidSBell.com).



Please Discuss This Article:   Post a Comment 

Article Review FIVE STARS *****
Posted by: LauraWolfe
Jan 11, 2012
This Doctor posits that if we quantify our fatigue it will help our Physician understand CFS. Not only does he provide sound reasoning, he also shows HOW TO make this method work with numbers and charts. I plan to print this out and begin keeping track of my numbers as this article suggests.
Reply Reply

 
great article but very severe would not have even 5mins of activity
Posted by: simpsons
Jan 11, 2012
its a great article but the very severe may have only 5mins of activity or none at all. so important to the non MEcfs sufferer to understand that not all MEcfs patients would have even the lowest score of activity time per day

thank you to dr bell for this great chart very good idea

 


Sickly/debilitating WEAKNESS as opposed to the word "FATIGUE..."
Posted by: balletdancer74
Jan 13, 2012
I have both M.E. and FM/MPS complex, etc. and have never used the term "fatigue" to describe how I feel as it's not technically very accurate.

What most of us feel is a debilitating weakness like someone is gradually poisoning us - a "sickly weakness" if you will.

Fatigue/tiredness involve most other chronic illnesses. I find that I also garner more respect as a patient when I don't use the words "fatigue" or "tired."

As a former professional ballet dancer I know what it's like to feel extremely tired/fatigued. Usually, some rest, sleep (something we, unfortunately, don't get much of), vitamins and an epsom salt bath did the trick. I was "tired/fatigued" but did not feel "sick" or unable to get back to class, rehearsals and performances by the next day. I didn't feel "weak" or "drained."

Regarding Dr. Bell's latest article, I agree that one should be more specific as to the "degree" of their abilities to perform certain activities. It's difficult for a physician (even for some of the best) to determine if the "fatigue" is illness-related or from being over-worked...or due to a minor and very easily treatable condition like possible anemia, etc.

I suggest that patients (and doctors) be more specific w/ language as "fatigue" and "weakness" aren't synonyms. ;-) Hence, one of the reasons I'm not a fan of the inaccurate, misleading and completely insulting names CFS and CFIDS...

I always enjoy Dr. Bell's take on all things ME and FM. I wish more doctors had his knowledge and compassion. Thank you, Dr. Bell! :)

To Healther Days!
LB

p.s.
Please ignore any typos as I'm battling a brutal migraine as I type the above. :P
Reply Reply

 
To: dcBallet (again) ;-)
Posted by: balletdancer74
Jan 15, 2012
Hi Again!

I just wanted to say that in all of these years (12+), I've yet to "meet" a former professional dancer that has or been open about having ME/CFIDS! I do know one former ballet dancer who has FM, but he can still work...not easy, but he "manages."

I think there are many more of us out there, but with the ridiculous stigma, no one is coming forward.

I should've mentioned to you that I'm an official advocate for ME/CFIDS, FM, GWS and MCS. www.ncf-net.org (The National CFIDS/ME Foundation, Inc.).

I wish all of the celebrities with ME/CFIDS would do something already. I know of two very famous ones who have said they "had" CFIDS but are "cured." Yeah, right! lol They're both very famous singers/actors. We need famous people to speak up for us and help raise awareness. We can't do it ourselves, but despite all the constant obstacles, I won't give up! :)

Look forward to hearing back from you!
BD74

 

 
To: dcBallet...
Posted by: balletdancer74
Jan 15, 2012
Hi There!

Sorry it's taken me a few days to get back to you, but I didn't see your message until now. :)

I was "officially" diagnosed with ME/CFIDS when I was 25 1/2. I already had FM/MPS complex unbeknownst to me and my doctors. It was only until I began treatment that the FM/MPS was thrown my way. Frankly, it was simply the sour icing on the already rancid cake as I call these illnesses. haha

I've always been a healthy and very active individual. At the age of 21 1/2 I had foot surgery (FHL tendon) due to a ballet injury. While the surgery was deemed a "success," it was right after the cast came off a week later that I started to gradually develop "odd" symptoms such as spasms, twitches, clumsiness (i.e. falling all the time like someone was kicking the back of my knee - thought I had MS at first), a stabbing pain in the back of the middle of my head, respiratory issues, ubiquitous pain (arthralgia/joint, myalgia/muscle and neuralgia/nerve - the worst!), low grade fevers, weight loss, swollen glands, inability to sleep, eventual weakness (not tiredness/fatigue) and general malaise if you will, etc.

I went from being completely vibrant and productive to sick as a dog. I ended up completely bed bound for nearly a year. I also suffer from hemicrania continua (perpetual head pain/pressure/ache - 24/7) which than explodes into a migraine, occipital neuralgic headache, muscular attack, etc. My neuro and I call the explosive head pain "head pain attacks." I came up w/ that since they're so complicated and debilitating.

I do find gentle stretching helpful; I guess once a dancer always a dancer however cliche that sounds, aye? ;-) But, having both FM and CFIDS/ME is tricky as one calls for gentle exercise while the other calls for major pacing and is much more complicated as you know. Our immune systems are so compromised/weakened.

My treatment involves a few meds, acupuncture, PT (I always have something "new" going on. Right now I have a "bulge" that was found in MRI on my cervical spine which is triggering peripheral neuropathy on the right side of my face - excruciating face/head/eye pain and burning), vitamin/mineral infusions, etc. I can't take herbs.

I'm fortunate to have a great family and group of true friends (the rest - well, good riddens! lol) some of the top specialists for both ME/CFIDS and FM, but the fact of the matter is that I am still disabled.

I take each day as it comes...How about you? What do you "think" triggered your CFIDS/ME? Do you also have FM?

To better days!

 

 
Professional Ballet Dancer and CFS
Posted by: dcballet
Jan 14, 2012
Dear balletdancer74,
Thank you for your comments on Dr. Bell's article. I was just curious how long ago you developed CFS? I was also a professional ballet dancer and CFS ended my career, but way back in 1985. I have lived with CFS for 27 years now and have improved only by avoiding exercise, pacing and limiting activity each day. I am currently attempting an interval exercise program with heart rate monitoring to try and build back some muscle strength and increase my overall stamina for daily living. I am also trying homeopathic remedies under the guidance of a natureopath. Just curious if you would share your CFS story? Thanks and good luck to you.

Sincerely,
dcballet

 


Typos in lettering
Posted by: QuayMan
Jan 28, 2012
In these bits:
-----
Most healthy people have 12 hours of inactivity (sum of a, b, and c) and 12 hours of activity during the average day (sum of e, f, and g). But:

• People with severe CFS have 1 to 2 hours of activity (e + f + g);
-----
I think it should say: d + e + f rather than e + f + g
Reply Reply


Post a Comment

 
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