tag:blogger.com,1999:blog-690850457652849477.post1801964805511468155..comments2024-03-19T09:10:47.280-07:00Comments on Reasonably Well: Where Do You Fall in the CFIDS/Fibromyalgia Rating Scale? Julia Oleinikhttp://www.blogger.com/profile/04857783768340014545noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-690850457652849477.post-31233254931628240432013-10-30T11:04:15.546-07:002013-10-30T11:04:15.546-07:00I'm too late to join the discussion, but this ...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.Heathernoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-91539841170277185782013-10-22T11:14:47.441-07:002013-10-22T11:14:47.441-07:00I have Sjogren's and am too sick and in too mu...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 Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-32069350052844968612013-08-12T16:24:15.112-07:002013-08-12T16:24:15.112-07:00WOW, this is a hot topic. I too fall in the 30-40 ...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. <br /><br />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.<br /><br />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. <br /><br />Best of luck to you all..... to us all! Jannoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-19256314650694995852013-08-04T21:13:09.505-07:002013-08-04T21:13:09.505-07:00Mary Ellen,your pulmonologist should start out wit...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.<br /><br />There are some new Sjogren's Pulmonary Clinics being set up according to this article on the Sjogren's Syndrome Foundation website: http://info.sjogrens.org/conquering-sjogrens/bid/301297/Pulmonary-Manifestations-and-Sjogren-s-Pulmonary-Clinics.<br /><br />Perhaps if one of these is near you, you can make arrangements to <br />go there.<br /><br />BeckyJoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-72961006785709265852013-08-04T12:09:25.294-07:002013-08-04T12:09:25.294-07:00That was an eye opener. I function between 20 and ...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. <br /><br />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.<br /><br />Thanks and many blessings to all here! <br /><br />Mary EllenMary Ellennoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-52585345404210149712013-08-04T11:18:09.348-07:002013-08-04T11:18:09.348-07:00I am pretty much a 30. It is difficult, and yes, e...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.<br /><br />Thanks for starting this important discussion.<br /><br />Blessings,<br />JaneJanehttps://www.blogger.com/profile/04880509595317100208noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-4328501910596697392013-08-03T21:12:44.131-07:002013-08-03T21:12:44.131-07:00My SJS was originally diagnosed 19 yrs. ago when I...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)<br /><br />SLCCOM said...<br /><br /> BeckyJo, I was diagnosed with "asthma," too. There might be some asthma, but there can also be lung involvement with Sjogren's.<br /><br />BeckyJo<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-16606229035266390572013-08-03T15:27:11.119-07:002013-08-03T15:27:11.119-07:00Thanks for this interesting post and for the great...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. <br />PS my 'office' is dark green but much the same.Hedahttps://www.blogger.com/profile/00953091713220195010noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-12473160453153596322013-08-03T10:50:10.987-07:002013-08-03T10:50:10.987-07:00Most of the time I'm fortunate to be at about ...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!Melodynoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-9877699500431620202013-08-03T10:07:34.170-07:002013-08-03T10:07:34.170-07:00Reading your post really hit home with me! I'v...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.<br />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. <br />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. <br />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. Anonymoushttps://www.blogger.com/profile/13653624634903570706noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-11166760956796412362013-08-03T08:58:29.554-07:002013-08-03T08:58:29.554-07:00BeckyJo, I was diagnosed with "asthma," ...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.<br /><br />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. SLCCOMnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-39534437984325212412013-08-03T08:33:35.910-07:002013-08-03T08:33:35.910-07:00Oh heck! The last two nights I've been in bed ...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.<br />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.<br /><br />ChristinaChristina https://www.blogger.com/profile/14573410980007011505noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-51892110204341949252013-08-02T19:47:55.177-07:002013-08-02T19:47:55.177-07:00I was diagnosed with SJS 19 years ago, and since t...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).<br /><br />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. <br /><br />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.<br /><br />BeckyJoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-88433163369361042892013-08-02T19:06:33.755-07:002013-08-02T19:06:33.755-07:00I would say, usually, I range from a 40% to 80%. I...I would say, usually, I range from a 40% to 80%. It REALLY depends on the day.<br /><br />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.Blogger Mamahttps://www.blogger.com/profile/05222887642439201203noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-57660274530476457012013-08-02T16:36:12.562-07:002013-08-02T16:36:12.562-07:00This is a very interesting survey and discussion. ...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! <br /><br />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. <br /><br />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?<br /><br /> 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! Kellyhttps://www.blogger.com/profile/02013830406271839467noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-53532660920650146722013-08-02T15:50:56.435-07:002013-08-02T15:50:56.435-07:00I would say normally I am exactly where you are 30...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. <br /><br />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!<br /><br />Thanks for the post as always we are pretty much on the same page.ShEiLahttps://www.blogger.com/profile/12439819553846591903noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-14646795259195945922013-08-02T15:40:27.156-07:002013-08-02T15:40:27.156-07:00I think I hover around 60 most of the time, but if...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.Nicolenoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-28950376046456202102013-08-02T14:07:43.706-07:002013-08-02T14:07:43.706-07:00Had I known earlier in the game how many levels of...Had I known earlier in the game how many levels of "tired" that I could feel, I would have played tougher. <br />"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. <br />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. <br />I honestly wake up with a different body every day. Sometimes it changes itself out with another midday. <br />Interesting scale though. I'm gonna print this out for my doc. Thanks for posting it. This is a big topic it seems. Amy Junodhttps://www.blogger.com/profile/06060344931214062441noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-21363882251875669652013-08-02T12:40:15.746-07:002013-08-02T12:40:15.746-07:00You said it right: This disease STINKS!
I'm ...You said it right: This disease STINKS! <br /><br />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. <br /><br />I don't have a great hammock but I do have a lot to be thankful for.<br />Peggynoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-17322597725604302332013-08-02T12:00:31.969-07:002013-08-02T12:00:31.969-07:00Wow! This was a real eye opener for me. It is tr...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.Anonymoushttps://www.blogger.com/profile/06709330056885238109noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-53236525508644537982013-08-02T09:47:12.638-07:002013-08-02T09:47:12.638-07:00I am between 50-60 which is very fortunate, althou...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 dayvickienoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-38785282450227010932013-08-02T09:05:08.577-07:002013-08-02T09:05:08.577-07:00Thanks for this post. It allows me to feel sorry f...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.<br /><br />I'd put myself between a 40-50, also. Once in awhile I get lucky and get a 60! LMnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-16252843340739066392013-08-02T08:43:12.191-07:002013-08-02T08:43:12.191-07:00I've done these surveys before for the pain cl...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.<br /><br />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.<br /><br /> 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.<br />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. annienoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-6356466269898816652013-08-02T08:24:15.843-07:002013-08-02T08:24:15.843-07:00You get a lot done for a person who's at a 30 ...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. <br />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 40Annettehttp://yourgoldwatch.blogspot.ca/noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-34942559717122943482013-08-02T08:23:32.713-07:002013-08-02T08:23:32.713-07:00Yes, Yes, yes! Same here! It is incapcitating fati...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 .<br /><br />.But's its not because we are lazy. In fact, it seems many of us affected by AI disease, are/were type A personalities.<br /><br /> 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.. <br /><br />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. <br /><br />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...<br /><br />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.Juliehttps://www.blogger.com/profile/03246323949942772639noreply@blogger.com