Chronic Denial? An article on CFS

rugbymurf

PEB Forum Regular Member
I have been diagnosed with Chronic Fatigue Syndrome (by a provider employed by the Army), but in my initial MEB appointment, they would not put it down as a condition on the referral form. So yeah, denial it is. It's completely debilitating. It has stolen my life from me. I had no idea what was wrong with me until I was being followed up for a large local reaction to my second anthrax shot that I got on my way to Iraq and I fell asleep during an EKG and it prompted the researchers to do some more testing and they said "er... I think this reaction was more than local, it seems it was systemic and the anthrax vaccine reaction probably has caused CFS in you". Nice. Thanks. And now you don't want to put it on my MEB/PEB?
 

Jason Perry

Benevolent Leader
Site Founder
Staff Member
PEB Forum Veteran
Registered Member
rugbymurf,

First off, welcome! I sometimes see PEBs and the military services struggling with the issue of diagnosing conditions. While a proper diagnosis can be very important for medical treatment purposes and should clarify issues with the MEB/PEB, my view is that the more important issue is the correct and accurate assessment of "disability." That is, the VASRD compensates for disabilities and even if the diagnosis of the condition is wrong, the military still has an obligation to rate the condition. As evidence of this, take the case of an "undiagnosed" illness. I have seen PEBs come up with weird findings when they do not feel a diagnosis is confirmed. But, if the prominent feature of the condition is documented, they can and should rate the disability (for example as chronic fatigue, fibromyalgia, or cognitive disorder, whichever feature is more prominent and disabling, either under that code or as an analagous code).

Now, this is not to say that the PEBs will get this right and rate appropriately. However, if they do not, you have a strong basis for an appeal. They simply cannot avoid compensating for documented disabilities because they are unsure of the diagnosis.
 

rugbymurf

PEB Forum Regular Member
Right. The big issue here is that the MEB doc doing the referral saw PTSD and Major Depression on there and immediately said "Oh, you can't really diagnose CFS then because of the overlap of symptoms and the fact that CFS is a diagnosis of exclusion". Well, he's not the first to think of that, and they looked hard at the timeline, and found that due to the chronological relationship of the symptoms, the sudden onset of the symptoms and the reaction to the Anthrax shot that was documented, and the fact that up until one specific night, I had to use a lot of medication just to get to sleep. I was not diagnosed with depression until about a year later. But I see your point, the important thing is that the actual disability gets rated. At the end of the day, I don't really care what they attribute it to. I think it's likely that they will attribute it to depression and PTSD. I had PTSD since my first deployment but never this sort of debilitating tiredness and headaches until after that second anthrax shot and reaction. I would happily have the health back that I had when I went into the Army and not take a cent from their board if they could give that to me. No amount of money can make up for what I've lost. But I'm also thankful that I havent suffered the types of physical wounds that I saw some of my patients have (I became a Nurse for the latter part of my service). I only want what I feel is due to me for the lost physical, mental and emotional capacity and potential I've suffered. Whatever they want to call it. I'm nervous about making that happen the right way.
 

rugbymurf

PEB Forum Regular Member
Update........

Initially my CFS was not found to be unfitting on my NARSUM. I appealed (I had to fire my MEB attorney who did a pathetic job, even though I gave her all the notes and statements necessary to do a good job. But she went on leave in the middle of it and forgot to put in an extension so it was a rush job, in the end, I did it myself) that finding and it came back as being unfitting after the appeal. Then it was found to be unfitting on my DD199. So apparently they are listening.

Maybe there is some fairness in all this.

Murph
 

rugbymurf

PEB Forum Regular Member
Oh, scratch that about the fairness. When my ratings came back, even though the condition was found unfitting, it was rated at 0%.

Murph
 

Jason Perry

Benevolent Leader
Site Founder
Staff Member
PEB Forum Veteran
Registered Member
Murph,

I wonder about the accuracy of the rating:


6354 Chronic Fatigue Syndrome (CFS):

Debilitating fatigue, cognitive impairments (such as inability to
concentrate, forgetfulness, confusion), or a combination of other
signs and symptoms:

Which are nearly constant and so severe as to restrict routine
daily activities almost completely and which may occasionally
preclude self-care 100

Which are nearly constant and restrict routine daily activities
to less than 50 percent of the pre-illness level, or; which
wax and wane, resulting in periods of incapacitation of at least
six weeks total duration per year 60

Which are nearly constant and restrict routine daily activities to
50 to 75 percent of the pre-illness level, or; which wax and wane,
resulting in periods of incapacitation of at least four but less
than six weeks total duration per year 40

Which are nearly constant and restrict routine daily activities by
less than 25 percent of the pre-illness level, or; which wax and
wane, resulting in periods of incapacitation of at least two but less
than four weeks total duration per year 20

Which wax and wane but result in periods of incapacitation of at
least one but less than two weeks total duration per year, or;
symptoms controlled by continuous medication 10

Note: For the purpose of evaluating this disability, the condition will be considered incapacitating only while it requires bed rest and treatment by a physician.

If medication controls your condition, it should be at least 10%.
 

AzuRa

Registered Member
Yes, a few years ago I got really sick and progressively gotten worse and after dozens of doctors, tests, and being sent all over the place they diagnosed me with CFS and Chronic Infectious Mononucleosis. They cannot get consistent test results showing muscular dystrophy so they are running with CFS for now and see if MD/MG surfaces over the next few years.

My doctors are very concerned I am going to get shafted on ratings. I can barely walk more than fifty feet, 4-5 pounds is all I can really carry prolonged, and my life is centered around my bed. I've been sitting in my barracks room for about a year rotting away, taking naps every few hours, and balancing my appointments. Even though my life is reduced significantly, having to have a very simplified and careful day to day life, I am not incapacitated or require hospitalization so that is where the shafting shall begin.

I am not too sure if I am able to give any one guidance getting through a board with CFS as my case is both ridiculous and the fact that Naval Hospital or my unit even know how to handle my situation at all.

It been a bit more than a year since the MEB disqualified me, but trying to get my package sent out has been the biggest pain. I need a referral from every doctor, so if a said doctor gets out, you have to go back to the clinic and re-do all their tests to get a different doctor to say yes.

A few things that will help out for your board:
-Make sure you get every doctor note from each visit (Start a new personal medjacket)
-When ever you are done seeing a specialist, ask them for a recommendation, even a simple letter head of what they think of your case, what you should be doing.
-You can talk to a lot of medical attorneys for free, so shop around now, and find one and fill him/her on your case. Don't wait until an appeal, I started with a lawyer as soon as my doctor started initiating my med board.
- Depression, be very careful with it as they can take away CFS because of that. Depression somehow toppled my blood tests, EMGs for chronic mono some how. Didn't know when you are sad you can create a virus /sarcasm..

I know if your a single Active Duty Marine your family is pretty much disregarded, unless you are married. My family was mortified when our Major decided to lift the limdu ban on taking leave and let me go home. For almost two years they were only getting tidbits of information from my illness and case so it came to become a very huge shock when they saw me. They ended up contacting a Congressman some time back and that really helped getting the board moving now.

Work with your MSC to help get the facts to your Chain of Command so they can assist you. I've been lucky, my command had me check out, cut out the bs so as soon as I get my rating and and EAS they can send me home-awaiting-orders.

CFS management tips: These helped me out, may not be a cure, but I am more positive and I feel more productive.

- Do what you can to keep yourself out of the exhausted zone.
- When I was still working, it was very difficult not to sleep from when I got out to when I go in the next day, as well as sleeping all weekend. Now that I am not, managing my sleeping is more critical. Take naps, fluctuate between short and lengthier ones through out the day. It's important you do not take naps at the same time everyday. Keep your body from adjusting to this as much as possible, even though it sounds like a bad thing.

Nap schedule that works well
(Its hard to say "well" with CFS/CM because you are exhausted 24/7, but sounding and actiing as positive as you can will make you feel better.)

0500-0530 wake up, check in with Plt Sgt, socialize with Marines
0530-0730 appointment time or household duties (laundry, cleaning ect, more energy in the morning)
0730-0900 1st nap
1100-1200 2nd nap
1400-1630 3rd nap
1930-2030 4th nap if I plan/need to stay up a little later
Either 2000 or 2200 sleep
Every other day fluctuate naps by 30 minutes
-Maintain a good diet, Mediterranean Diet was very good. I use Leon Heart because my pumper is crapping out on me (Wide variety of food, easy to make in a barracks room, inexpensive, and low fat)
-Try to keep a decent social life is very important. As hard it is, being alone will make this much worse. Believe me I think my doctors were the most socialization I had through out the day and they aren't much for conversation :eek:). Take it easy when you go out with them, I try to have a platoon dinner once a week or every two weeks. Plan accordingly, take longer naps before hand, watch the alcohol, and get your mind off of being sick.

At the end of the day it still sucks, but you have to deal with it, you do not really have a choice. No matter how much you do not want to believe it, even all my doctors feel bad that they feel like they failed me diagnosing me with CFS you, and only you can improve your quality of life. Regardless, if it sounds like a duck, walks like a duck, treat it as if it's a duck and at least you might feel a bit better.
 

rocketman

Registered Member
Tired Old Soldier,

I’m in the same boat with the same results. My JAG stated that she has seen so many Soldiers with the same symptoms and maybe one day someone will finally address the CFS issue.

I was referred to a specialist by the name Dr. Lapp. He is a rhuematologist who spoke to our wonderful congress on several occasions about CFS. I was originally diagnosed with Fybromyalgia but with just two doctors declaring this was indeed the cause for all my joint pain and extreme tiredness. Dr. Lapp concluded that CFS was in fact the real culprit. New medications prescribed by this doctor have helped a great deal. If interested, I can share with you how Dr. Lapp is treating my CFS. I’m looking for better health whether the Army compensates or not.

I’m still on hold waiting for my PEB review and VA. I have nine disqualifiers excluding CFS. Army doctor would not concur with the specialist.

v/r
SGM Uhl
 

pittpan2005

PEB Forum Veteran
Tired Old Soldier,

I’m in the same boat with the same results. My JAG stated that she has seen so many Soldiers with the same symptoms and maybe one day someone will finally address the CFS issue.

I was referred to a specialist by the name Dr. Lapp. He is a rhuematologist who spoke to our wonderful congress on several occasions about CFS. I was originally diagnosed with Fybromyalgia but with just two doctors declaring this was indeed the cause for all my joint pain and extreme tiredness. Dr. Lapp concluded that CFS was in fact the real culprit. New medications prescribed by this doctor have helped a great deal. If interested, I can share with you how Dr. Lapp is treating my CFS. I’m looking for better health whether the Army compensates or not.

I’m still on hold waiting for my PEB review and VA. I have nine disqualifiers excluding CFS. Army doctor would not concur with the specialist.

v/r
SGM Uhl
What are the military docs doing for CFS treatment? I was rated 40% by PEB for CFS back in 2010, but that is a symptom of my illness. I undergo continued treatment for my condition and hopefully keeps helping with my fatigue, but curious what the docs are using to treat and diagnose it. It seems like they have been using CFS/Fibro as a diagnosis when no other explanation can be found. No military doctor I saw ever had a treatment plan for CFS besides muscle relaxers, narcotics and antidepressants. Have they advanced care since then?

Thanks......
 

fmiles

PEB Forum Regular Member
I submitted a claim for CFS last August with VA and still awaiting decision. If they can't rate me under 6354 Chronic Fatigue Syndrome (CFS), I'm hoping they'll tie it to my initial VA rating of 60% for Pulmonary Vascular Disease (6817).
 

pittpan2005

PEB Forum Veteran
The CFS diagnostic criteria seems like a circus. The VASRD indicates the diagnostic criteria associated with it is derived from the NIH. If you look through the NIH's opinion, which leads to CDC guidance, they conclude "bed rest" is not a good treatment technique. Now the VA rates you based on the amount of time you spend in a "bed rest" state and under the care of Rheumatology. If doctors are not advised to prescribe bed rest, based on best medical practice, as a treatment technique, why would the VASRD still be using that as a tool for determining compensation percentages?
 

Crazyinthenavy06

Registered Member
I honestly can only speak to my experience and conditions which may blow some minds. My CFS is not one of my big three, more like my fourth however I have been at 2-4 hr days, documented, for well over a year. In that time I can honestly say I stayed on medication the entire time for this condition, remain so, and will sleep 12-15 hrs of amazing sleep daily. Then awake ready to take on the world for the first two hrs only to be halted by the rest of my "special qualities." Granted whatever I am rated at it really does not matter as I can honestly say this would be the reason I could not find work to support myself (frustrating).

As far as the bed rest state, I can say that it is not really prescribed. Also if you read the VASRD for what it is it says percent of time for bed rest among other things.... But normally CFS is not by itself. Normally there are other conditions and complications present enhancing, enabling or complicating the CFS so most docs will try to fix something else in hopes of helping your CFS. Good luck to everyone!
 

Grov3r

Registered Member
Interesting. I have been told by providers I suffer from chronic fatigue. I have been through a sleep study. They told me I had minor conditions but did not require a CPAP (thank God...I understand those are annoying). They put me on prozac and melatonin.

I never had a problem falling asleep. My problem is I don't wake up rested. I want to sleep all day. As a previous submitter wrote, I also will wake up (eventually) ready to take on the world only to crash a couple of hours later. Without the aid of stimulants like coffee, smokes or cattle prods, I probably wouldn't have much of a life.

Chronic Fatigue did make it to my NARSUM; however, it was not a disqualifying condition for retention sent before the PEB. Also, as previously posted, the docs seem to try and treat other ailments in hopes of "helping" me sleep better. Depression (probably caused by crappy sleep), PTSD, mood swings, equilibrium problems, TBI, etc.
 

sharon.c.fahey

Registered Member
Oh, scratch that about the fairness. When my ratings came back, even though the condition was founD unfitting, it was rated at 0%.

Murph


What??? Are you serious? How about on the VA


side? Did they rate it? After reading your posts, the anthrax shots are what we all have in common. I don't have the energy to jump through all these hoops.
 

sharon.c.fahey

Registered Member
="Jason Perry, post: 20604, member: 1"]A link to a very interesting article in the NY Times:

http://www.nytimes.com/2009/10/21/opinion/21johnson.html

I have only come across a handful of cases of members with this condition going through an MEB/PEB. However, my limited experience shows that this is a very real and debilitating condition.
When I read that in my record I really didn't understand it. I have been chalking up the depression and tiredness to the back and body pain. All the meds I have tried with little to no help as well. It feels like an endless cycle, now it's fibermyalgia, which I heard is just a bucket diagnosis when they don't know what else to tell you. Have a sleep study coming up in July. I would give anything to feel predeployment again or even during deployment I was fine. I don't know but I have never been so defeated and ashamed.
SCF
 

2013GO

PEB Forum Veteran
Sharon,
Please hang in there....PM if you need to chat. I sooooooo totally understand but we have got to NOT let this whole process control and determine how we feel...most importantly how we feel about ourSELVES! (Of course I am talking to myself right now!!) I have never been a complainer....whiner...so to take to these boards and let it "all hang out" is difficult, as I am sure it is for most of us. I have found that taking control of how you think (as well, if not as important as...) your nutrition and lifestyle. I know with energy lacking and brain-fog it may seem impossible...but "baby-steps"! Docs/VA will only treat your symptoms...not the cause (hence, if you open most veteran's med cabinets, u will wonder if they were operating a pharmacy out of their homes!!). It is up to us to figure this out....how to feel better. In the meantime, butting heads with the "system" is enough wear anyone out in frustration. Just know you aren't alone....
L
 

Spooky731

Registered Member
I've also had issues with receiving a rating for CFS. I have MS which explains the fatigue. I was placed on Provigil for it after Ritalin made my heart rate go through the roof. Provigil helps somewhat. I still love napping though.

0530: Wake up with husband to send him off to work. I rise but that whole shine thing is almost blasphemous as I'm so tired.
0900: nap time
1200: sleepy but somewhat functional to take care of some odd work around house and shower
1430: nap time
1630: make dinner
1800: nap time
2000: attempt to motivate to do something constructive as this is the time I'm more energetic compared to any other.
2200: sleep for the night

I claimed fatigue on my initial paperwork and it was mentioned as a condition in my narsum. However, I received feedback in my (proposed rating) results that stated that the condition was undiagnosed. I asked my neurologist about it because I am taking Provigil for it and Ritalin prior to that. My neuro stated that he could not diagnose it according to the ICD-9 medical coding structure stating that CFS cannot be diagnosed if it can be explained by another condition (MS). I don't understand this because it does indeed exist and I am affected similarly to most folks with it. I was told by my PEBLO to inquire about it when I'm seen by the VA after discharge as you can appeal or ask to be re-rated up to 1year after discharge. It just seems like a bunch of run around to me. I'll cross my fingers, hope, pray, and do the VA final ratings rain dance in the meantime. Good Luck everyone.
 
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