Friday, August 2, 2013

Where Do You Fall in the CFIDS/Fibromyalgia Rating Scale?

I have such conflicting emotions towards this piece of furniture.  

Skippy and Lulu don't. 

I was asked to participate in a survey recently and one of the items that we were asked to evaluate was our fatigue levels as measured by the  CFIDS/ Fibromyalgia Rating Scale:

  • 100: Fully recovered. Normal activity level with no symptoms
  • 90: Normal activity level with mild symptoms at time
  •  80: Near normal activity level with some symptoms
  • 70: Able to work full time but with difficulty.  Mostly mild symptoms
  • 60: Able to do about 6-7 hours of work a day.  Mostly mild to moderate symptoms
  •  50: Able to do about 4-5 hours a day of work or similar activity at home.  Daily rests required.  Symptoms mostly moderate.
  • 40: Able to leave the house every day.  Moderate symptoms on average.  Able to do 3-4 hours a day of work or activity like housework, shopping, using computer.
  • 30: Able to leave the house several times a week.  Moderate to severe symptoms much of the time.  Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
  • 20: Able to leave house once or twice a week.  Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
  • 10: Mostly bedridden.  Severe symptoms
  • 0: Bedridden constantly.  Unable to care for self.

This was an interesting experience. I haven't been asked to rate my fatigue levels in years. I gave the survey a great deal of thought, and decided that most of my life occurs between the levels of 30 - 40.

Hm. Gee. That sounds pretty pathetic, I thought.

I reviewed the categories again......but there was no denying that I seem to be functioning somewhere between 30 -- 40% of what is considered "normal activity level with no symptoms".


I think that at the peak of my rituximab energy cycle, I may have made it to 50-ish, which accounts for all of eight months over the past eighteen months. I loved those months. But the remaining ten months fell firmly in the 30 - 40s. And since it appears that my rituximab infusions are a thing of the past, unless some other treatment modality comes along, I'm stuck there for awhile.

This explains -- maybe a little -- why aside from fatigue, my biggest difficulty seems to be fighting that constant battle against myself to just get up and DO something. It's more than just being fatigued, or in pain. Put simply, I'm tired of being tired. I'm tired of having to struggle against myself to do the simplest of things.  Everything just seems so hard. Everything. I get so tired of fighting with myself for what seems like every time I move this old carcass of mine. I feel as though I'm constantly in a battle with my body to keep it upright or moving at all. Whether I'm doing the dishes or folding laundry or working on the computer, I always find myself wistfully thinking that I'd rather be horizontal somewhere: in my hammock chair, or on the couch, or at worst in bed. Even on my really good days, with hiking boots on and Lulu trotting ahead of me on her leash, I begin a short walk in good spirits but within minutes deflate and find myself searching for Goldie or a bench or a nice flat piece of grass.

I know that my difficulties are minuscule compared to others with more serious health issues, and I don't mean to insinuate that I could even come close to dealing with the same level of challenges that catastrophic illness brings; such as stroke, cancer, severe pulmonary disease and the like, or even the changes in our bodies that accompany normal aging. That being said, the fact still remains that for me personally this disease STINKS. Well, there's lots of facets of this disease that are pretty stinky, but in particular fatigue seems to be more odiferous than the others.

Here's an example: Last evening was just lovely. As the sun was setting along with it's UV rays which seem to zap me even more, I figured I was safe to escape from the house. I watched John zip around mowing the lawn and pruning the fruit trees  and grabbed a hoe almost without thinking and began to chop away at some weeds near a flower bed. It felt so GOOD to have my hands all dirty and my muscles working with a purpose. I pulled weeds and smoothed the dirt and examined the flowers.

Ahh. But it didn't take more than ten minutes worth of work before I knew it was time to retreat to my hammock chair; where I swung and boing-boinged and grumped.

Why should a simple thing like pulling weeds be so hard?

Well, I know why. There's no denying that for me, my particular flavor of autoimmune disease includes life-changing fatigue. Even though I KNOW this, after ten years I still rail against it. I know that I have to rest and listen to what my body is telling me: Julia. You're tired. Don't go too long without a rest or you'll crash big time.

But I also know this: To simply give up and spend as much time horizontal as my body seems to want will in the long run cause more problems than I already have. My muscles would become even more deconditioned, my already big hindquarters would only expand further, and by limiting my sphere of personal interactions to what would be possible from the couch or bed I would suffer psychologically as well as physically.

Not good things.

Which means that I have to suck it up and push to do things that my body doesn't want to do every day. Really big, hard things like walking up two flights of stairs. Or brushing my teeth. Or folding a whole laundry basket full of clothes that John has already put through the washer and dryer, bless his heart. If I allow myself to dwell on all the hard things......they only seem to become harder. I hate that. I hate feeling weak and needy but I also hate feeling as though every day is yet another battle. So I've been wondering what I can do to avoid those hateful feelings. I HATE HATING stuff.

I've decided that while my life is far from perfect, I need to look around and see that I'm not alone in my imperfections. I have a good friend that has juvenile onset diabetes and walks a very thin line between normal and abnormal blood sugars; she has diabetes-induced cataracts, she occasionally wakes up covered in sweat and weak from hypoglycemia, and experiences all the dumb stupid long term effects that nasty disease can heap on her. She's doing everything right: she eats right. She exercises. She maintains an ideal body weight. She keeps up with the very latest in diabetes education and research. But her life is still a challenge and will continue to be so. Every single day is hard for her.

Another friend suffered a debilitating stroke when only in his late '40s. He lost control of half of his body, his ability to speak, his ability to work, and ability to drive. Every single day is HARD for him.

I know a wonderful family that has lost their home and financial security as a result of this crummy economy. They were forced to sell their home and move into a different city to attempt to live on a fraction of what they previously were accustomed to. They worry about those basic things like food, clothing, and shelter. Every day. What hard work that is!

The person that initiated the survey lives in the 10 -- 20% bracket of the CFIDS scale. My goodness.

My friend Bev's mother is dealing with the ravages of Alzheimer's disease. Bev is trying to keep her head above water as she cares for her mother and her husband and her family. (And her chickens and four dogs -- but then that's another story altogether.)

I guess the old adage about "counting your blessings" may be somewhat overused, but still rings true. It's what keeps me from teetering on the edge of depression and self-pity. If I think about even the simplest of things -- like the fact that I have a hammock chair (I've forgiven it for dumping me on my tush three times), and a family, good friends, and a couch to be cranky upon, then I feel better.

30 -- 40%?  Pfffftttt.

If fatigue is part of your Sjogren's syndrome symptom mix, where would you rate yourself in the CFIDS scale?


sue said...

Some days I am an 80 and some days I am a 40. It can really vary from day to day. I do have to push through the bad days though because I have a 17 year old with multiple disabilities who can't dress or toilet himself and has multiple therapy appointments a week. I am grateful that things are as good as they are. They certainly could be a lot worse.

Anonymous said...

Very timely post, Julia. Fatigue is my most debilitating symptom as well, falling in the 30 zone these days.

And like you, I still struggle with the balancing act needed to live with this. I more often err on the side of being more active because I just don't want to give in. Rightly or wrongly. Oh, and by being more active, I mean stripping the bed and grocery shopping on the same day.

Charla said...

I, too, reside in the 30-40 level. You wrote, "I don't mean to insinuate that I could even come close to dealing with the same level of challenges that catastrophic illness brings; such as stroke, cancer . . ." I have dealt with cancer--lung cancer--including a thoracotomy and chemotherapy. I'm an 8 year survivor. However, I find what I deal with now with Sjogren's is much worse, the fatigue, pain, sick feelings, etc. Who would have thought that? I'm better now than I was 3 years ago. I get through each day just being grateful I'm alive. I don't like having a chronic illness but I'm choosing to not suffer from it. With me Sjogren's is a given, suffering is a choice. (However, there are days . . .)

Julie said...

Yes, Yes, yes! Same here! It is incapcitating fatigue, that is indescribable. It's more than just being tired. It's not even having the motivation to do anything, or having the mental energy to do anything .

.But's its not because we are lazy. In fact, it seems many of us affected by AI disease, are/were type A personalities.

I am about a 10-15, from the RA,(with some accompanying heart damage from it), secondary Sjogrens, and accompanying gastroparesis and jejunal motility disorder. However, after not responding to any bios and other RA meds,for the past 4 years,, finally I have had a partial response to every 4 months Rituxan cycle, and full dose methotrexate injections weekly, plus prednisone. The sad thing is, the best I can do, is maybe 25 on the fatigue scale, on my good days..

I am at least, able to walk some now...First just here in the house, and slowly, short intervals outside. I look at it as rehabing my couchbound muscles that have been deconditioned by several years of being couchbound, and lots o' steroids, also, also decreasing muscle mass.

I also find it helpful though, to count my blessings. Our diseases dont hold the corner of suffering. There is more than enough nasty diseases and other situations like you described, to go around...

I have an almost identical "office" , as in your picture of your couch,Julia, where I have my couch, coffee table, all set up, for keeping me in touch with the world, with my trusty laptop, and my comfy couch, with adequate space for my yorkie furbaby.

Annette said...

You get a lot done for a person who's at a 30 to 40. Those blog posts don't just appear out of nowhere for starters. And you are there with a post every day. At only twice a week I find it a lot of work to produce them.
When it comes to the scale I don't know where I fit. My expectations for accomplishment are flexible. I can go out and expend a lot of energy because my adrenaline kicks in but eventually I oay for it. Maybe I'm around 40

annie said...

I've done these surveys before for the pain clinic and I always have a difficult time with them. Pain and fatigue is never the same day in and day out, and not even the same all day long,it constantly changes.

Some days I have barely enough energy to brush my teeth and make an effort to have dinner on the table for my family, other times I'm able to do laundry, swiffer my floor and go for an errand all in one day.

Most days the fatigue is more debilitating than the pain, other times both hit together simultaneously and then you feel like you're just a step from death.
It's scary to go from a fully functioning person to a disabling one without even realising what hit you. I still count myself lucky as I am able to walk and talk and get around and am still fairly healthy despite all this.Julia, I would say I'm like you in the 30-40% range.

LM said...

Thanks for this post. It allows me to feel sorry for myself for a few minutes, but then snaps me back to reality ;) I am constantly reminding myself that 50% of my days are better than the the other 50% and that I am blessed to be able to rest most time when I need to. I am not fighting cancer or a terminal illness. Though, sometimes it feels like I've been sentenced for life.

I'd put myself between a 40-50, also. Once in awhile I get lucky and get a 60!

vickie said...

I am between 50-60 which is very fortunate, although it tends to make people not believe me. Heck, sometimes I argue with myself that maybe this is all in my head, because how can it vary so much from day to day

Unknown said...

Wow! This was a real eye opener for me. It is truly hard to accept just how much the unrelenting fatigue has taken over my life the last 3 years. It's funny how we seem to over estimate how well we are doing on a regular basis. I am probably at a 30 now but was down to a 10 in March. We do all aspire to have our old selves back, I know I do. I guess we need to give ourselves a break and celebrate our progress realistically. Thank you, Julia, for the much needed and greatly appreciated information.

Peggy said...

You said it right: This disease STINKS!

I'm about a 60% now but have realized that I have to pay someone to do most of the yard work now and even looking for a house keeper. I feel so "lazy" but have finally learned the hard lesson of conserving my energy.

I don't have a great hammock but I do have a lot to be thankful for.

Amy Junod said...

Had I known earlier in the game how many levels of "tired" that I could feel, I would have played tougher.
"Some patients may experience fatigue..." was what I read. SOME patients? I wish they would just change this to all because it's really so life altering.
Sometimes I will have the fatigue without the brain fog and it's such a blessing. Then on days where my brain fog makes concentrating a tragic event, I will have my body long enough to get some chores done.
I honestly wake up with a different body every day. Sometimes it changes itself out with another midday.
Interesting scale though. I'm gonna print this out for my doc. Thanks for posting it. This is a big topic it seems.

Nicole said...

I think I hover around 60 most of the time, but if I overdo at all, it's back to 30-40 and a climb back up. I was at about 50 with dips before the Plaquenil kicked in.

ShEiLa said...

I would say normally I am exactly where you are 30-40% range... However, last Sunday a Sjogren's/ Auto Immune Flare of some sort hit me and it has knocked me for a loop. I have been bumped to the 10-20% range since then and just cannot seem to rally.

My daughter really wants me to take a little shopping trip with her tomorrow... I am going to try. We may have to moderate speed and I may need to slow her down... I hate feeling like the flat tire on the freeway. Arghhhh!

Thanks for the post as always we are pretty much on the same page.

Kelly said...

This is a very interesting survey and discussion. I would say lately I'm around 80-90 much of the time with days here and there in the 40-60 range until a flare comes along. During a recent flare it was more like 20-40 consistently for 3 weeks, UGH!

Back in my 30's (age-wise), I was hovering most of the time in the 30-40 range (fatigue-wise on this scale). I believe that's when the damage was occurring that eventually led to noticeable, recognizable SS symptoms like the dry eyes and repeated sinus infections, tender tongue and difficulty swallowing. And then the constant grinding fatigue seemed to ease a bit except as I mentioned, during flares, when I suspect a little more damage occurs each time.

It seems to me that episodes of intense fatigue, no matter how long they last generally precede a usually gradual, but sometimes sudden worsening of more specific, reportable symptoms attributable to Sjogren's. Does anyone else notice this connection or does the fatigue seem to have a life of its own unrelated to the progression of rest of your symptoms?

Every once in a while I still have those magical, inexplicable but always welcome days when I feel GOOD, 100!. Even on a 100 day, though, I would not attempt weeding anymore because the Sjogren's Piper will always expect to be paid for any out-of-the-ordinary things you do on good energy days in one way or another. With me and pulling weeds, it's the weak, sore hands that last for days after only a few minutes of hand weeding. But I could do a little shoveling or raking or turning soil with my cool weasel tool and I can definitely plant seeds!

Blogger Mama said...

I would say, usually, I range from a 40% to 80%. It REALLY depends on the day.

This would definitely be an instance when having a young child helps me get going. I am not sure that I would have the tenacity otherwise.

Anonymous said...

I was diagnosed with SJS 19 years ago, and since then have also been diagnosed with asthma,interstitial cystitis, fibromyalgia,sleep apnea, anemia & gastroparesis (and am currently being tested for kidney disease).

Lately, I'd say my fatigue has been ranging from 10 to 30 and I'm very grateful that my dear husband helps so much. I don't dare schedule anything outside the house for 2 days in a row or I'll be exhausted for 2-3 days after.

I also have a tendency to overdue it when I have a "good" day but when I do something "fun" on those days, at least for a little while, I feel normal again and can always look back and feel like I was able to do something for myself.


Christina said...

Oh heck! The last two nights I've been in bed as soon as I get home from work. The tiredness makes me dizzy. I know when I'm flaring because I get more dizzy than normal because I'm so exhausted! But exhaustion alone will get me dizzy. I just know I over did it and I either go to bed or just rest for a long while.
I so know what you ate talking about. I don't understand why it's not more known about the severe fatigue. Seems like most of us have it.


SLCCOM said...

BeckyJo, I was diagnosed with "asthma," too. There might be some asthma, but there can also be lung involvement with Sjogren's. I'm now on oxygen at night, so if I were you and had decent insurance coverage, I would get a more thorough check.

Go to Sjogren's World "Living with Sjogren's" and look up Sass and lungs. Take the information to the pulmonologist, because they aren't trained to look for this.

Unknown said...

Reading your post really hit home with me! I've been following a lot of blogs, forums, etc. about Sjogrens, but this is the first time for me to comment.
I'm newly diagnosed and am searching for something, anything, to help me find that inner fight to start living this new life. Your post about how every day is such a battle and you're tired of being tired is exactly how I feel.
I'm struggling along at 20-30%. Everything is a battle. Getting dressed (forget about prettying up), feeding my dogs and making it to the couch is an accomplishment. I'll read something or see something that inspires me, but I haven't been successful in making that first positive step yet. I'm tired of days, weeks, months slipping by while we wait and see.
Reading my comment sounds like one big whine, which isn't normally me. Guess I need to add attitude adjustment to my list. :). Thanks for giving me hope in this new, crazy AI life.

Melody said...

Most of the time I'm fortunate to be at about 70% but fall lower, sometimes as far as 40%, on occasion. This past school year (I teach elementary music) was extremely difficult because of the constant bronchitis and sinus infections. It was interesting to me to see in some of the other posts and things I've researched online today that this is a common complaint. I'm wondering if my winter of sinus/bronchitis/lung issues is just one more of the things I should expect from this disorder. The doctors - and I've seen many this summer - have no answers, they've done about as many tests as they can. Right now - not back in school yet - I'm feeling about 80-90% but really dreading getting back into the routine of teaching every day. And really worried that I'm going to have another winter like the last one. As someone else said, things seem to change daily with no warning. I have lots of hand sinitizer, have changed some of my allergy meds and just have to remind myself to get lots of rest!

Heda said...

Thanks for this interesting post and for the great comments even though they bought home the reality of having sjogren's. According to the strict definition of the scale I sit between 60-70% because I still manage (just) to keep working full time though I have some fairly serious sjogren's related illnesses. But in terms of my life as a whole I would say I function at around 40-50% when compared a healthy person. Like others I'm grateful for what I have. I'm still working but looking forward to retiring early at the end of 2014. Yee haa! I can walk and regularly try to push myself to walk long distances. I can still drive though I no longer have the energy to drive to and from work or long distances. Funny that driving is harder than walking but it is especially on sunny days. It's because the brain fog is worse for me than the fatigue. I can still see which is great and I'm making the most of my sight just in case! Things could be a lot worse.
PS my 'office' is dark green but much the same.

Anonymous said...

My SJS was originally diagnosed 19 yrs. ago when I was also dignosed with interstitial pulmonary fibrosis. It aggressively treated it's been in remission for nearly 5 years now, but I have to continuing my medications as the pulmonologist says it may return as I get older (and I'm now 68)

SLCCOM said...

BeckyJo, I was diagnosed with "asthma," too. There might be some asthma, but there can also be lung involvement with Sjogren's.


Jane said...

I am pretty much a 30. It is difficult, and yes, even after 23 years I still fight myself over the things I can't do. And yet, I am fortunate in many ways, so I have to be glad I have as much freedom as I do. Life with autoimmune disease sucks.

Thanks for starting this important discussion.


Mary Ellen said...

That was an eye opener. I function between 20 and 40, depending on what's been going on. There are weeks at 20, then I jump up to 30 or 40. I live alone, making every activity a challenge, including having enough clean clothes. Forget regular housework! I consider myself blessed to be able to maintain a positive attitude most of the time, this is an opportunity to give myself credit! Wish I could get some credit from people around me but unless you live it, it's almost impossible to understand.

On a side note, I'm recently diagnosed with possible/probable SS, still on the diagnostic quest that started 8 years ago, and have been referred for pulmonary testing because of shortness of breath with most activity. Aside from the site that was mentioned, where can I find a good link to what to look for with SS and pulmonary function tests? I had a normal looking chest x-ray a few years ago to rule out sarcoidosis.

Thanks and many blessings to all here!

Mary Ellen

Anonymous said...

Mary Ellen,your pulmonologist should start out with a battery of pulmonary function tests, they may also want to do arterial blood gas tests (to measure the oxygen in your blood), if they suspect lung disease, they will probably do another x-ray and if anything looks suspicious they will likely take a CAT scan or MRI. I ended up having a lung biopsy where they determined that I had interstitial pulmonary fibrosis related to Sjogren's.

There are some new Sjogren's Pulmonary Clinics being set up according to this article on the Sjogren's Syndrome Foundation website:

Perhaps if one of these is near you, you can make arrangements to
go there.


Jan said...

WOW, this is a hot topic. I too fall in the 30-40 range most of the time. I'm 61, can no longer work, and finally was able to receive ssd. What a blessing that is.

There is no word for the fatigue that anyone who hasn't felt it would understand. Impossible to explain. The energy level is horrendous, and as has been said, getting the laundry done, and an errand in the same day can be a big accomplishment. With everything slowly progressing (liver disease, gerd, erosive esophigitis, kidney disease, cognitive impairment, ibs, osteoarthritis, lymph edema, and too many others to list), I am taking the time now to do as much as I can, while I still can. I bought a motorcycle, and am riding it when I can and loving it. Just did my first 'pirate poker run' this weekend.

Can't seem to get much done around the house, but save up as much energy as I can for fun stuff. Take my Provigil on the days I know I need to, but try not to take it everyday, already being on over a dozen meds. This disease does STINK! But I know I'm blessed still being able to do what I can. Who knows what next year will bring.

Best of luck to you all..... to us all!

Anonymous said...

I have Sjogren's and am too sick and in too much pain to be vertical for more than 20 min at a time (Horizontal isn't much better either). I was an avid runner for 20+ years and would to go for a run but that's not even a choice for me. I would love to choose not to suffer, I know how powerful the brain is....unfortunately, Sjogren's has too tight of a grip on entire body (inside and out). I've had 4 good weeks in the last 14 months. I guess it's better than none. Ugh

Heather said...

I'm too late to join the discussion, but this was really eye-opening for me. I live consistently in the 20-30 range, due to the combination of exhaustion/fatigue and pain. There is some variation, but not a huge amount. A few days per year I drop down to 10. It's possible there might have been a couple days of 40 in the last year, but that is rare and completely unsustainable.