In early April, we published one of Dr. David Bell’s ME/CFS case studies titled “The Prisoner” – one of 10 cases he wrote up some years ago highlighting the different aspects of this illness and courses it can take. (Search ProHealth.com on “Case Histories of Chronic Fatigue Syndrome” to find them all.)
In this, the final case, the patient was able to ‘recover’ after several years, and was helped by Dr. Bell to carefully overcome his well-learned fear of physical activity leading to relapse. Whether his is an absolute recovery in the usual sense, only a lifetime history may one day tell.
Readers’ posted comments on “The Prisoner” were varied and vigorous – from dismissal (“Has He Really Recovered?” and “No Scientific Use”) to analytical (“The 5-Year Cut-Off”) and validating (“My Recovery Was Like This Too”).
Because the latter post, by “Ex-CFS,” expresses so eloquently the viewpoint and concerns of those “who have mostly or fully recovered,” or hope to do so, we would like to share it here. (Bolding added.)
My Recovery Was Like This, Too
by “Ex-CFS” posted April 6, 2012
This is a very important story, and should not be dismissed as previous comments have done.
It seems the least research and guidance in CFS/ME and fibromyalgia research has been on recovery – how do people who have recovered differ, and what is their recovery like? How long does it last? How back to “normal” are they?
Without this information, we who have mostly or fully recovered have to fear and wonder.
I was very sick with diagnosed CFS (multiple times by many experts (MDs and alternative providers, under any definition, and many lab tests, over and over through a 2 year period, so I think this diagnosis is beyond question) and probably also had fibromyalgia (was better before heard of it, and later an MD expert on fibro told me I probably had it).
At its worst, I felt closer to death than life. I could barely stand only 5 minutes a day, every other day, to take a shower. I moved from my bed to a chair and back each day. I could only watch daytime TV and barely comprehend that – and me with an Ivy League education.
I played with my young children in a reclining chair, which seriously limits the options! I once had to wait 45 minutes in my doctor’s parking lot to park because I could not walk farther to the door, let alone wait in all the lines to get a handicapped parking permit!
So, I know the awful symptoms of CFS.
I also thought I might be dying of cancer or AIDS and doctors were just missing something. So, I resonate with the fears of “The Prisoner.”
I recovered through using the best of both worlds, all that traditional MDs could offer, including some innovative treatments, and MUCH that alternative medicine and lab tests could also offer. Yes, that also included a 4 drawer cabinet of supplements, and later when I was feeling much better, exercise.
My chiropractor told me that swimming (my exercise of choice and I think a good one for CFS and fibro) might just chase the last counts of the 4 serious infectious illnesses I still had simultaneously, away for good.
And darned if it didn’t.
Of course, I started at levels I formerly would have considered insultingly basic and easy. And I rested afterwards. I recovered.
But after “recovery,” I was left with many questions and worries. So, like “the prisoner,” I probably took it too easy just in case. Then, I also learned at other times, I had to take it easier.
So, some guidance on how to manage recovery would be really helpful.
I do know that part of recovery, after overcoming any acute problems, is rebuilding reserves of many things in the body – sleep, nutrients, hormones, neurotransmitters, etc. The body needs to be rebalanced, including the immune system and hormone systems, as well as nutritionally.
To do this, the body needs the right ingredients – hence the supplements, and/or medications. Stress reduction and less stimulation also is key to recovery.
This rebalancing and rebuilding takes a while, but then one can feel better and better. Once I knew what to do, I felt better rebuilding and rebalancing in about 6 months. But that was after the infections were essentially gone.
The first problem was that I did not know what returning to “normal” meant.
For over 20 years before I became ill, I was superwoman, as many who fall ill with CFS were pre-illness. I was sick for just over two years.
What would be normal and not superwoman levels of feeling good at my new age? I was getting older in my early 40s. For about 4-5 years after recovery, I very slowly felt a little better all along. I mostly could do normal things, but could not push myself without ramifications. I was also afraid to push myself because one thing I would not risk was falling back into CFS again.
But I still had nagging omnipresent symptoms, mostly dragging fatigue and brain fog that made it hard to really do anything hard mentally or physically.
It was hard to focus on any kind of intense performance, and unfortunately that is what my former career choice required. As my kids grew, they also wanted more intensity in their lives and I could not always participate. I also got sick a lot, getting everything that went around, over and over again. Flu season was 2-3 times as bad for me as for others.
For whatever reason (pushing too hard, sick) every now and then, I would have crashes where I would have to rest and regroup, making sure I was doing the things that allowed me to recover the last time, without fail. These crashes would last usually a few days to 3 weeks, but then I was fine again.
My body slowly strengthened over time and symptoms became fewer, less severe, and less frequent over the years.
Then, suddenly, for no apparent reason, I woke up one day feeling really good and strong and have been fully functional ever since.
Yes, if I overdo or get sick, I have downtimes to rest, more than the normal person. But overall, I do what I want. I am careful not to overdo.
This has limited my career and life choices and ultimately led me to divorce to get out of a relationship that had seriously depleted me in every way for far too long. I think when I was sick I did not have the energy to free myself from this, but once recovered, I could see the disparate effects of illness and emotional trauma.
Personally, I think the recovery after 2-3 years may have to do with overcoming low-level chronic infection(s). But I have noticed a 10-year recovery period among many with CFS I have heard about. Others comment here about a 5-year recovery period.
The body is constantly replacing cells and rebuilding the body, body part by body part at different rates. And our threshold to notice illness (I am told) is something like 80% ill before we notice, so if a body part rebuilt to push us back over the threshold in a healthy direction so we don’t notice, the symptoms associated with that body part / organ / system might seem to suddenly disappear. This is consistent with how my recovery felt.
I do not think that those who remain ill have bad genes.
One reason is how long it takes to manifest, and another is that there are many other possible explanations which are not permanent. Though there is research regarding epigenetics, junk genes, jumping genes, and “master switches” that I think has potential to explain the sudden onset of a multi-system illness like CFS, and also to explain recovery.
This does lead to the hope that genes are not destiny and so maybe genetic influences could be influenced back with the right interventions.
I do think that CFS is both the result of and causes cumulative damage to multiple body systems and organs. It may be that in some cases the damage is too bad to reverse, and this accounts for the 20% who seem never to recover.
Though we are learning that the body rebuilds more than we knew, and stem cell therapies offer more hope for better rebuilding in the future, so I would never say never.
Anyway, today (10 years after recovery began, and at 51), I feel mostly normal. I still try not to overdo, and I’d dearly like to know if this caution is warranted, or if I would do better to, say, work out more.
I do walk a lot, have an active normal schedule but without regular formal exercise. Still I have hiked, played tennis, and swum laps all without incident. I do feel like I could push more and gain more energy and strength in my body.
Deconditioning and muscle atrophy over the last 12 years of illness and recovery, and due to the busyness of catching up for lost time, is an issue. I will be soon trying more regular exercise, and we’ll see how that goes.
Another thing nobody talks about is how hard it is to catch up on things missed that you were unable to do when ill with CFS.
If you miss two years time, that does not mean you can catch up in 2 years. You would have to do more than normal to catch up and if you are worried about overdoing, that is not practical. I am still catching up on some needed tasks and things that should have been done long ago, and it is 10 years since recovery.
But I’m almost there.