CFS/FM: How Much Have You Improved?

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jul 22, 2008.

  1. Slayadragon

    Slayadragon New Member

    I've been happy to see that a lot of people here recently have reported improvements in their functioning and subjective well-being as a result of various treatments. That's really exciting!

    However, it's often hard to gauge how much people have improved or why they've done so.

    I thus thought I'd ask folks who have improved to rate their "before" and their "now" functioning on a consistent scale.

    The one below isn't perfect, but it's the best one I've seen. (I think that mezombie originally introduced me to it. If so, thanks!)

    Thanks much for participating!


    Updated 10-05

    Bell's CFS Disability Scale

    This scale is from The Doctor's Guide to Chronic Fatigue Syndrome, by David S. Bell, MD, pages 122-123. Addison-Wesley Publishing Company, Reading, MA. Copyright © 1994, 1995

    The attempt is to document as accurately as possible the severity of symptoms, the degree of activity impairment with both activity and rest, and the functional ability regarding full-time work.

    100 No symptoms at rest. No symptoms with exercise; normal overall activity level; able to work full-time without difficulty.

    90 No symptoms at rest; mild symptoms with activity; normal overall activity level; able to work full-time without difficulty.

    80 Mild symptoms at rest, symptoms worsened by exertion; minimal activity restriction noted for activities requiring exertion only; able to work full-time with difficulty in jobs requiring exertion.

    70 Mild symptoms at rest; some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work full-time with difficulty.

    60 Mild to moderate symptoms at rest; daily activity limitation clearly noted. Overall functioning 70%-90%. Unable to work full-time in jobs requiring physical labor, but able to work full-time in light activities if hours flexible.

    50 Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4-5 hours a day, but requires rest periods.

    40 Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties; able to perform light duty or deskwork 3-4 hours a day, but requires rest periods.

    30 Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day but requires rest periods.

    20 Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 30%-50% of expected. Unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.

    10 Severe symptoms at rest; bedridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

    0 Severe symptoms on a continuous basis; bedridden constantly; unable to care for self.


    I was at maybe 60% for most of my first decade of my illness. I got to that level only with the help of a bunch of different things (including supplementation of about 10 hormones, controlling candida, avoiding food allergens and addressing sleep).

    I dropped to about 50% in 2006 (with the notable exception of a two-week trip to rural Japan when to my surprise I jumped to 90%). I was at about 20-30% in 2007 (except when I made a superhuman effort to drive to Indianapolis to see my doctor).

    Now I'm at about 80% most of the time. (Occasionally as low as 50% when I'm pushing detox too much by mistake, occasionally 90%.)

    All I have done differently is mold avoidance and various sorts of detox (cholestyramine, methylation supplements, intravenous vitamin C, brown seaweed). It's been a steady improvement upwards since I left my house back in early December 2007, though the real improvement has only been in the past couple of months. The first six months were _hard_. I wasn't feeling a lot better yet but had tons more things to do. This has been a difficult process (emotionally, physically, financially) and I can see why people would be disinclined to do it. It seems to be finally paying off though.

    I still would like to "get my brain back," but by normal standards my brain is perfectly fine. It's just not what it was like "before," especially when it comes to task-switching (a problem that manifests itself especially when I try to approach major writing projects.) This seems to be a dopamine problem, I think with the receptors rather than the levels. (Search Wikipedia for "Richard Deth" for more info on this.)

    I feel quite certain I can get to a higher level than this, since I'm continuing to get detox symptoms like mad. Just how much better, we shall see.

    The only problem that I can see is Erik's comment that mold plumes are getting bigger and more numerous. However, if the whole world fills mold we're all going to be in trouble (or at least the 25% of the population who cannot easily handle limited amounts of it will be), and so perhaps I will try not to worry about that.
    [This Message was Edited on 07/30/2008]
  2. Catseye

    Catseye Member

    0 twenty months ago, now around 40-50,maybe more, it's hard to tell because I haven't pushed myself lately

    I'm going to ride my bike this afternoon and see what happens

    It's all from supplements and restricted diet.
  3. babyk902

    babyk902 New Member

    i think i'm at about 50-60% since i was diagnosed 4 years ago, i've steadily been improving but kind of been maintaining the same, i've cut out wheat and fast food and trying to completely give up sugar, but so far i think i feel a little bit better, and have incorporated progesterone cream which i've heard ppl with cfs need to do, so it may be a combination of that.. i have a job and i try to go to school full time, so for me its always a bit of a struggle but i manage it, and i'm proud of myself for that
  4. labrat

    labrat New Member

    Using the Bell's CFS disability scale I have improved from 20 in late 2003 when first diagnosed to 40-50 now and am able to work part time. For about a year in 2006-2007 I was at 70 and worked full time but with severe symptoms and exhaustion. The only things that helped me improve are rest, taking trazodone for sleep, and klonopin for sensory overload/anxiety.
  5. Khalyal

    Khalyal New Member

    I've gone from a 3 year period of consistent 20% to a fairly consistent 70% with moments of 90%. The moments are brief and irregular, but I'm hoping with time they will become more regular. I also still have brief periods in the 40 to 50% range but they do not seem to have the hold that they used to.

    I've done extreme mold avoidance (got rid of all my stuff, moved, etc)., and stay on a mostly rigid detox program. I have also completely changed the way I eat. I think the mold avoidance is crucial. The detox and eating habits are supportive. Without the avoidance I don't think they would have made any difference.

    Like you my brain power is good but I don't feel as capable as I did before CFS. Multitasking is not as easy for me. I used to be able to spin many, many plates, and now I really have to make myself concentrate on one thing at a time.

    I share your concern regarding the ever increasing mold plume problem, especially in light of the past several years of flooding and lack of proper cleanup across the country. I'm not sure how long our "safe" places will remain safe. But I'm hoping that if we avoid contact for a period of time and support our immune systems, that maybe (just maybe) our systems will have a fighting chance at purging toxins more efficiently.

    LISALOO New Member

    I was felling like no one was having sustained improvement, but this shows taht I'm wrong and maybe there's hope. I've declined for 4 years
  7. MamaDove

    MamaDove New Member

    I was a "0" 19 months ago and today I am a "40"...

    Reasons for improvement-Discontinued mainstream medical treatment and all they advise, stopped all drugs they prescribed, researched my symptoms and labs and determined what I needed to focus on and my game plan began and continues with nutrition/diet...I will be using supplements soon.

    I see a Naturopath/Healer monthly...

    I recently added LDN (low dose naltrexone) and have noticeable improvement in FMS/CF symptoms...Not taking correct dosage for colitis but looking for great improvement in the near future...


  8. tooks

    tooks Member

    Hi everyone,

    I want to respond to this but don't really fit on Dr. Bell's scales, so I'll just describle:

    Three years ago, mostly confined to bed, able to drive to grocery every couple weeks (had no choice).

    Now I can exercise a half hour to an hour a day for 5 or 6 days a week, as long as I keep the aerobic part of it at a moderate to low level. Could work all day at a computer with feet up, but don't have stamina to go out to a job more than very part time. Brain functions pretty well for thinking, but can never remember "facts" for more than about a second. Like if I go from one room to the other to get someting, I have to repeat what I am getting the whole way or I'll forget.

    I can now do normal housework, whereas before making a bed was an evening's project. Still can't lift, walk up stairs, or do anything with arms over head, but on the whole I can manage daily life, and that is really good news for me.

  9. homesheba

    homesheba New Member

    i am on the fentanel patches.
    without them i actually believe i would not live long. and i hate to say that.but i would go insane,
    i am absolutly scared to be without them
    cause of the pain .
    i go very far to my dr cause he was the only one that would help me back then after sooooo many others
    wouldnt get past the lortab which finally wouldnt work......
    so now that fibro and cf is more 'mainstream' now
    i am still apprehensive to find a dr closer for fear
    that he will try something different and poof!!!
    ill wind up back in bed all he time wanting
    to die from agony.
  10. xchocoholic

    xchocoholic New Member

    Hi Lisa,

    Hope your mold avoidance / treatment is going well. : )

    It took me awhile to respond because I have trouble relating to the disabilty scale when it comes to my improvements. If I had to use this though, I'd say I'm bouncing around between 10 and 40 still.

    Most of the time, I don't have symptoms at rest, but PEM and oxidative stress interfere with excercising.

    If you look at what symptoms I've eliminated (ataxia, myoclonus, facial muscle twitching, brain zaps, insomnia, IBS, GERD, ADHD, chronic hypoglycemia, adrenaline rushes) you'll understand why I feel so much better though.

    Dr. Bell doesn't mention these symptoms in his scale specifically, but I assume he considers these at rest symptoms.

    And if I even accidently eat gluten I'm down to a 10 - 20 for at least 4 - ?? days. I'm sure that's because I'm a celiac and my villi get destroyed for a few days everytime I eat gluten.

    Work or having to be anywhere on a regular basis is still out of the question for now, but I'm hoping it's just a matter of time before my body heals from all of this.

    Take care ... Marcia

    [This Message was Edited on 07/24/2008]
  11. pw7575

    pw7575 New Member

    Thanks for posting this Lisa! It is always helpful to see that people are improving. Just wanted to bump this back up to the top for others to see. I know there are a couple other people that I think have reported improvement who haven't responded on this thread yet so maybe they will post if I bump this up.

    Thanks to everyone who responded and shared their improvements with us.

    Take Care Everyone!
  12. jenbooks13

    jenbooks13 New Member

    I looked at this scale and I can't figure out where I fit. I'm 40 on some 70 on others. For instance: I have maintained my writing career and can meet pressing deadlines. OTOH sometimes I get horrible migraines (I'm wondering if its all mold hits!) and am down and out for a day throwing up and sick as a dog. I cannot do any aerobic exercise, forget it. I can walk a mile comfortably (except for a current knee injury that is really upsetting me) but if I do two miles I start to feel it and my body protests. So I am 60 as far as work, but 40 as far as "unable to perform strenuous duties." It's confusing.

    If I have a bad night's sleep I can't concentrate well the next day at all; no reserves.

    If I skip a home hyperbaric session for more than 10 days, by day 11 I'm feeling awful and MUST GET IN THE CHAMBER. That awful was how I lived earlier in lyme and it was a horrible toxic exhaustion.

    I skipped my IV vitamins/minerals last week and I'm more exhausted than usual. They give me energy.

    I don't really know what to say. I will say that some of my symptoms improved on lessening mold exposures but I am still in a home with mold and haven't been able to move. However I do think mold is significant for those of us who also have lyme and trouble detoxing biotoxins. Getting rid of molds, also staying away from chemical exposures.

    Odd but true, LESSENING mold exposure made me feel better but unmasked more chemical sensitivities and my body seems haywire right now. It is very troubling. That's not on Bell's scale at all (reaction to environmental toxins, chemicals, molds etc).

    Lisa I'm glad you're doing so well.

    By the way, if you have a chance to do a pubmed search on zeolite you should consider it. It was in that mold book you recommended. I think I'm going to try it. The animal research is practically astounding.

  13. 545

    545 New Member

    I've improved quite well. I'd say from 40-50 (about 2 years ago) to 80-90. I haven't checked in with you guys for a while, but overall things have been pretty good. I've been able to comfortably maintain a full time job for a couple months now; a few mild symptoms still creep up, but they're manageable. I'm also testing the waters with exercise, so far it hasn't been too bad, but I'm cautious so that I have enough energy at work.

    Mold avoidance, I think, has been a big factor in my improvement. My doctor though thinks that it's because he's treating lyme/coinfections. Who knows?

    It began one summer when I began a temp summer job - I'm now starting to think that mold from that job originally made me sick.

    I decreased my activity. Felt sicker. Lots of symptoms. Everything was off. Couldn't sleep, think, exercise. A lot of that time is really just a blur with some sad memories that'll always haunt me.

    I tried to do some medical reading, and actually stumbled upon a few things that really helped - licorice root and salt. After a few visits with a reputable doctor, I was told that I had atypical depression. I asked, 'then why would the salt and licorice root help, how does that have to do with depression?' 'Placebo,' he responded. So I said, 'but I've tried all sorts of energy drinks and supplements that didn't a thing - where was their placebo effect; I wish that they had a placebo effect so I could get better.' He just shrugged. Give me a break.

    With CFS, I learned, you don't just want a reputable doctor, you want a doctor who is an expert in CFS. Luckily I found the guy, waited for a few months on his list, and he really helped, prescribing sleep med, provigil, and proamatine, and recommending reishi and CoQ10 - they all led to strong improvements, pushing me up to maybe the 60's.

    Next, I finally took Erik's advice and read up on Shoemaker's research into mold. I got suspicious of my apartment, and felt noticeably better during a few extended stays elsewhere. (In retrospect I think it was the stuff in the apartment that I'd taken to the summer job). Over the next few months I moved in with my family, got rid of just about everything in there, clothes and all, and I began to feel the best I'd felt since I got sick. I took a 3-4 week trial of Questran, and still take it occasionally if I suspect I've been around mold. I'm not sure how much the Questran helped.

    At the same time, though, my doctor highly recommended oral antibiotics for what he suspected was lyme. So for over a year I've been on multiple abx (and plaquenil), slowly cycling through various types. I was on the abx way before I noticed the mold connection, when I was in my apartment they made me feel pretty bad; I'm still on them, they're not as bad anymore; they still slow me down for a few hours after I take them, but they're not too bad anymore.

    Regarding mold, my dr was aware of Shoemaker and how Questran works, but he suspected that the mold reactivity was caused by the lyme. Either way, I've gone through a few cycles where he's pointed out some mild herx like symptoms; as he'd predicted, the suspected herxs are often separated by a month or so and sometime occur in reaction to new abx. I continued to improve, and now I'm pretty good, living in a new place w/o any of my old items, and working.

    As my brain fog's receded I've tried to do more homework on all this. Like many I have my theories about CFS too, and my ideas are always shifting with others' comments & articles, but who really knows right? I've come to suspect that CFS is tied to shifts in the immune system that weaken cell-mediated immunity while placing other parts of the immune system (especially those producing antibodies against viruses) on overdrive. I think that explains why CFS often looks like a virus, why some dr's are focusing on abx and lyme, our extreme reactivity to mold, the suspicious role of vaccines (which boost antibody activity, not cell-mediated immunity) & most importantly the potential of Ampligen, which was just accepted for review. If the drug's accepted a lot of patients will get better and we'll be able to learn more about what's going on here. Someday it'll all be really simple and doctors will be able to coherently summarize the etiology of CFS in a few short sentences - hopefully as soon as possible, like the rotation of the sun around the earth - things were complicated when we thought that planets rotated around us, but with a few assumption changes everything became simpler and made more sense.

    In the meanwhile I guess I'd recommend mold-avoidance and reading Shoemaker - both are way underrated among most CFS docs.

    Even though I feel pretty good, I'm still occasionally experimenting with other treatment ideas, so long as they don't interfere with my doctor's list of meds. Here are some other misc. tips from personal experience:

    I recently found that Wobenzym's very helpful, which I discovered from Brian Rosner's book on lyme.

    Also consider olive oil - you can drink 1 or 2 teaspoons straight, with lemonade, or blended in with lemons (including the lemon skins). It's a very healthy substance. Do some research for more specifics if you're interested - generally extra virgin cold-pressed olive oil is most recommended for medicinal purposes. Gut problems are common in CFS, and as Lisa'd pointed out to me, olive oil may be useful just b/c it's so easy to digest - free fat and sustenance, while requiring hardly any energy to digest. I think it also helps me digest food and to get all their nutrients; likewise it also helps me ingest drugs, which are often absorbed through relatively small amounts of fat in the stomach. If for you some symptomatic drugs only seem to work half the time, it may be that you're gut's not digesting them properly (due to poor gut functioning in general). Consider taking those drugs after you've had some olive oil (Betaine HCL can serve the same purpose, but olive oil has been more helpful for me).

    Anyway, best of luck to all, and people do get better from CFS. Keep some hope, even at the darkest of times.
    [This Message was Edited on 07/30/2008]
    [This Message was Edited on 07/30/2008]
    [This Message was Edited on 07/30/2008]
    Waynesrhythm likes this.
  14. JoFMS

    JoFMS New Member

    Good idea. I think I have had CFS since Oct 2006 and would say I have gone from a 30 to now 50.

    Can be up and down though so difficult to judge.
  15. frosty77

    frosty77 New Member

    I'm with jens - some % on one scale, some on another. Basically I'm probably 35% but have to work full time. I was probably 50% for 20 years but in the last 10 years dropped to 35%. As long as it stays the same, I'm ok with it.
  16. pinballwizard

    pinballwizard New Member

    I am new. I have have had CFS for about 2 months after getting sick in Latin America and going on anti-biotics last year. I think I have Candida build-up

    I have seen my 100 go down to 60 since April.
  17. SGR

    SGR New Member

    I've gone from about 4.5 years of a 10 to a 40 recently. Helped by sleep with Soma and really helped by methylation protocol. Still struggle with wierd symptoms, reacted with head pain and sinus pain for a week after being exposed to some sort of verathane someone put on their deck. Have had some good days where I get a lot done, first time in years; can not only make lunch for everyone but dinner too! Still crashing hormonally, would like to see that go away. Can't seem to figure out progesterone dosage. But have been able to travel a little - which is fabulous considering I've been bedridden much of the time.
  18. heapsreal

    heapsreal New Member

    i was probably a 50-60, with flares drop of course, these would normally last 2-3 days then back to the 50-60 mark. Recently last 2 weeks have been taking inosine which is a supplement(low cost) which has similarities to immunovir(some drs reckon there is very little difference but the price)which is an immune mudulator and also has anit-inflammatory properties against cytokines which are the substances or bodies make when infected with some bug and make us feel awefull. Anyway I have been on it 2 weeks, the first few days were rough with headaches etc but during this my usually aching muscles and clicking joints went away and i took no more pain meds(lyrica or norflex). Doses are alternated so on the second week with a lower dose Im feeling really good, like i said the aches and pains are gone, brain fog gone, energy is better and my quality of sleep has improved, i use sleep meds once a week after a night shift, thats it. I dont think its a placebo effect if it was it should have happened ages ago and save me a fortune on the supplements i've bought, lol.
    I wouldnt say i was recovered until Im like this for a good 6 months. Im going to start expanding my boundaries and see how i feel. Its good to be able to plan about the future again.
    My current blog on is on immunovir/inosine if anyone is interested.
    Good luck all
  19. bigmama2

    bigmama2 New Member

    i dont really fit this scale, but i'll try--

    before cfs as a child- i was close to 100

    before cfs as young adult- i was around 90

    start of cfs age 25- 70

    progressing slowly to less and less over the years- 60, 50, 40

    i have a lot of variation in my cfs- good days and bad days. but for 2 years at my sickest- id average about a 40, but could dip as low as 30 (in bed most of day, struggle to care for myself)

    now with my improvement- i'm about a 50. (out of bed all day usually, able to care for self, able to socialize, feel much better, able to exercise some, to concentrate, to feel alive)

    the problem is work. i stopped working 2 yrs ago when i was sickest. my biggest improvement has been in last few months and i feel it is fragile. hope to keep improving and be able to work part time without getting sick. honestly dont think i will ever be able to work full time again. unless they realllly figure out what CFS is and how to treat it effectively.

    30 to 50 doesnt sound like much, but in reality it is. it is the difference between feeling more dead than alive, and now feeling much more alive than dead. hope that makes sense.

    this scale doesnt really fit me.

    thanks Lisa for the great post
  20. pasara

    pasara New Member

    I have been improving slowly, slowly. It is an up and down ride, so sometimes can't see it. I have to look over long periods of time and look back at journals to keep perspective.

    I'm about a 30-40 on average. At best around 50. If I mess things up by not managing my energy I'm a 10-20. I used to be 20 most of the time, with 1-10 when flaring. It doesn't sound like much of a jump, but it has given me back a modicum of normalcy to be out of bed and functioning in a small world. I just have to be very careful.

    The scale is hard though. I manage to stay where I am because I manage my energy very strictly. I know where I can go and where I can't. I spend most of my time at home, do not work or socialize except with basically with family, and do not drive. Around the house I can do some light housework now and read and do some gentle gardening (no digging or heavy work) in raised beds and containers. If you see me and talk to me when well-rested and fresh, in a place that "works for me" I will look fairly normal. But with a little time you will clue in to my inability to sit comfortably, my major distractibility and sensitivity to environment, my memory problems, and my general sagging as time goes by. When I am rested I now can walk around the block! This was impossible a year ago.

    Treatments that I know have helped me have been:

    1. bodywork -osteopathy, chiropractics, and massage therapy: These keep my musculo-skeleton system functioning, without them regularly I am a huge mess due to pain and muscle spasming, affects me not only physically but cognition and energy too. My husband once said to me, "I know massage helps people and feels good to everyone, but I have never seen how profound a therapy it can be until I saw how it affects you. I have never seen someone who has such a distinct difference before and after." (I have a GREAT massage therapist!!)

    2. acupuncture: I have had two series of acupuncture treatments, one at the beginning of the summer and another about a year prior to that. The former was about ten treatments, the latter about eight. I wish I could do it regularly but I cannot afford it. What I did have made a huge difference for me in calming my central nervous system and in emotional release. It especially helped me get rid of the overall tension in my muscles that I could not relax or release. I expect to go back to acupuncture each spring.

    3. homeopathy: I wish people on this board looked at homeopathy more seriously. It has made a HUGE difference for me. It has helped me with my energy, and pulled me out of major crashes or turned things around when I am sliding. It greatly affects my ability to sleep, and we all know how important that is. It also helps in a major way on the mental-emotional level which affects everything else. When anxiety, depression and poor sleep are all heightened, I know it is time to see my homeopath again. Being in balance through homeopathy also helps me not get manic when I am feeling better, keeps me a little more clear so I can manage my energy in a better way.

    4. Supplements: I take the following supplements, and trust that they are helpful, but except for the SJW I do not have a profound experience of the difference with or without. I feel that they are the right ones for me though.

    -St John's Wort
    -Very comprehensive multi-vit. and min.
    -Fish Oil
    -Acetyl L-carnitine
    -Grapeseed extract

    5. Stress reduction and energy management: I do all I can to avoid situations that stress me physically or emotionally. I have MCS, so I am very alert to what will affect me and do what I can to protect myself. I avoid places that assault my nervous system, and know how to incorporate rest and quiet times into my day. I could drive short distances if I had to, but driving, even a little, causes me to crash (ME, not my car!) so it is not worth it to me. I also understand the value of varying activities in a day to get more done. That is, for a while do something that needs mental concentration, then something more physical, then something more passive, etc back and forth like that, not pushing any one activity too long. And very importantly, our home is a peaceful place.

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