Here is her question:
Quite a story, right? I wasn't able to provide her with much information. Dr. Bell told me a few things. First, that a lot of people get CFS and recover within a year or so and are never diagnosed accurately in the first place, so we really don't know how many there are. He's done some studies on recovery, but his study participants mostly got CFS as children, and children have a better chance of recovery than adults (I remind myself of that often!). Other than his pediatric study, I don't think there's much data on recovery. He also told me that the best chance of recovery is in the first 5 years of illness, so she fits in that category. Also, there are higher recovery rates for those who had sudden onset and for those whose symptoms vary day-to-day. Other than that, I don't know much about recovery.
I was ill with CFS for 4 years, but for the last year or so
have had no symptoms, and have considered myself recovered.
However, in the last month I haven't been feeling as good -
nowhere near as bad as before, but I've been having
headaches and nausea, and my energy levels have been a lot
lower. I've seen my GP and they've ruled out other things
and have said it sounds like the CFS again. I recovered the
first time round by pacing really carefully and getting a
lot of rest, and once I was feeling much better introducing
some gentle exercise. I've started pacing again, and this
seems to be helping a bit, but not completely.
I've got 2 questions; first, is there anything else I should
be doing to avoid relapsing more? Second, if and when I feel
like I'm over this, how long should I carry on pacing myself
for? In the last 4 or 5 months I'd stopped resting/pacing
much, and this didn't seem to have any negative effect until
now. Once I'm recovered, how important is it to carry on
resting, and how much rest do I need to get?
Do any of you know more about recovery, relapse, and the questions she's asked? Any insights or experience would be appreciated.
I have anecdotal stories of remitting relapsing CFS more often of Lyme origin.
ReplyDeleteHaven't read this yet but it might provide some answers:
http://www.amazon.com/Recovery-CFS-50-Personal-Stories/dp/1434363589/ref=sr_1_1?s=books&ie=UTF8&qid=1286322431&sr=1-1
I'll hunt aroudn some more and see if anything else pops up.
Sue
ReplyDeleteThe groups I belong to from Bruce Campbell's program~ (for many years) have a few people who do very very well...most are in the middle, some are bedridden a lot of the time. Almost ALL have found some improvement with pacing and staying within the energy envelope. BUT even Campbell himself who can now hike for miles at a time, etc.and states he has recovered, keeps to a structured rest time and if he has a day or two that bring up an old symptom or two he goes back to strict rules of resting, pacing, etc. I don't think anyone can go back to their old life. The same as 90% of people who have had chronic Lyme must abide by strict rules even when they feel well or they see symptoms come back. I really would recommend she check out Bruce's site, CFIDS & FM Self-Help Org. He and Dr. Lapp will have a new site together soon ~I can get the site if she would be interested.
I had a similar experience with Fibromyalgia. The year after I had my older son, my fibromyalgia symptoms, which I've had for twenty years. I attributed it to medication and exercise. But the last three years it has slowly come back, despite medication and exercise, and now they're fully back. My doctor has no real explanation - except stress - but that's life, so there's not a whole lot I can do about that!
ReplyDeleteI was always told by doctors "Don't worry, we'll get you through this" and the same kind of things that you've just said about CFS with youth. But after having been sick for 10 years now I'm glad I finally stopped waiting on tenter hooks to get better.
ReplyDeleteMy current doctor in particular said she was being "brutally honest" with me when she told me that it wasn't about recovery, it was about symptom management - the better you learn to manage your particular set of symptoms with whatever tools you're able to find, then the more active you'll be able be.
This advice really helped me bring some perspective to my illness.
Poppy Red.
When I was 'under' the ME clinic I was told I would get better through resting and pacing, and I certainly did get 50% back through that. I'm sure if I was stricter and had ALL stress removed, not to mention nubile servants to cater to my every whim , I would see a lot more recovery. They did also say I would always have to be careful, that I would relapse if I overdid it.
ReplyDeleteIt's an interesting thought and one I hadn't considered before. If I was well how much would I fear relapse? And, if I was well would I be able to keep the resting and pacing going?
Renee -
ReplyDeleteGood points about pacing. I did Bruce Campbell's self-help course in my first years of illness, and I got a lot out of it, too. I've heard him say he's recovered, but I hadn't heard about him still resting and sometimes having symptoms - very interesting. Here in DE, I know lots of people who are 100% recovered from Lyme...but they are people who are otherwise healthy (no CFS!) and who were diagnosed and treated (most with just 1 month of doxy) immediately due to obvious symptoms. I think those of us struggling to get rid of Lyme often only hear from others in a similar position.
Peryl -
I've heard before that pregnancy can change CFS and FM (for better or worse). I got CFS after I was done with pregnancy.
Poppy Red -
I'm hoping that dismal outlook for CFS will begin to change as the retroviral research moves forward!
Jo -
That's what I'm missing! Nubile servants to cater to my every whim! Thanks for letting me know - I'll just find some servants and I'll be fine...
Sue
I'm working on it, Sue! Judy ;-)
ReplyDeleteMy specialist sees I'm guessing at least 1000 patients. And while she probably sees the "sickest" patients she believes pacing can improve most people. Still, she doesn't seem to think most people ever recover 100%....they always have to be careful. She does see some get to 80% though. I wish I could get to 80%.
ReplyDeleteYou might be interested in this article by David Bell from the Journal of IiME, 2010. From the abstract:
ReplyDeleteThe definition of clinical recovery as long been debated in myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). Clinically, many persons who have had ME/CFS declare themselves “recovered” or “nearly recovered” while continuing to present for medical care because of ongoing somatic symptoms. In this study ten persons who considered themselves “recovered” or “nearly recovered” were given questionnaires to assess health status and compared to healthy adults.
Half of the “recovered” subjects would be considered ill with CFS based upon the disability requirements of the CDC empiric definition of CFS, and all “recovered” subjects had significant somatic symptoms. Yet these subjects had all returned to normal in the symptom of orthostatic intolerance so that their daily activity was normal.
Thus the perception of recovery in ME/CFS is related to the ability to sustain upright activity and not related to the degree of somatic symptoms, including fatigue.
http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%204%20Issue%201.pdf
I have CFS. I was very ill for almost 2 years after having mono then it being diagnosed as CSF. I was doing better for the past couple years and now my symptoms and fatigue are coming back. I have been under alot of stress as work. I am considering giving notice due to my fatigue and the demands of my job but I am not sure if I would qualify for unemployment? I am asking for any advice on this subject.
ReplyDeleteHI, Cindy -
ReplyDeleteThanks for writing. You didn't leave me any way to contact you directly, only your comment on this old blog post, so I hope you will see this. Sorry to hear you are relapsing.
Are you looking for advice on treating CFS or on applying for disability?
I'd be glad to help you. Just e-mail me at jacksonde at comcast.net.
Sue
Hi there, I have had CFS for a year. However, I think because of it's sudden onset from stress, I fall into the 'adrenal fatigue' bracket- and have had saliva tests done which have verified my cortisol levels are very low.
ReplyDeleteAt the beginning of my illness, after I took the tests, I worked with a nutrionist to nourish my adrenals and help me stop crashing. This was a targeted diet of complex carbs, veg and protein- snacking at intervals of every two hours between meals. This helped so much that I was almost recovered.
Unfortunately, I then had some major stressors in my life, and this put too much pressure on my adrenals as they could not produce the cortisol to match the stress, and following that- my fatigue became chronic. I then fell into a very bad stretch of time where I was in bed constantly and felt awful being there.
A few months ago I found this programme: http://www.guptaprogramme.com/
This allowed me to get a hold on my symptoms and the maladaptive stress response that goes on for people with CFS. The hypothesis is that our symptoms can be perpetuated by a chronic stress response in reaction to our symptoms in the brain. This programme helps the brain calm down, WITHOUT taking away pacing.
I believe that combining this programme with good pacing and nutrition, is key to my improved health. I'm in my fourth month, and I have a much higher functionality than before. I can sit up and walk and do more than before- though I still have some way to go, I can feel that my programme is working. Hope this helps. Feel free to email with any queries rawson.roxanna@gmail.com
Kind Regards
Thanks
ReplyDelete