Uncertainty About Recovery from ME/CFS and Fibromyalgia - a Patient's Point of View
May 9, 2012
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.
| (3 existing comments)
Wrong rating for this article
|Posted by: SuellaP
May 9, 2012
I misunderstood about how to apply the rating stars for this article. I'd give it a 5 as I found both the issues and discussion very useful indeed.
Uncertainty...about Everything. 20 Rules for Living with Fibromyalgia
|Posted by: ZonaB23
May 10, 2012
Having lived with Fibromyalgia and the accompanying fatigue for more than 25 years now, I feel obligated to share my experiences as well.
While I would not call what has happened over that time "recovery", I am more likely to call it "learning my body's rules" and learning to abide by those rules.
What do I mean by "rules"? Well, here's the ones that rule a my life:
1. Don't do the same action over and over too many times. That means...if I feel up to taking a walk, do not go nearly as far as I think I can...or I will pay dearly for it tomorrow and the next day and the third day, too. By about the 4th day or so, I may be able to function more or less at my usual level. Consequently, I am unable to run a vacuum cleaner, mop a floor, clean house, wash dishes by hand...due to so much repetitious movement. Even using a computer mouse causes issues with my neck and upper back.
2. Get enough sleep. How much is that? Whatever my body says it is. Some nights, 7 - 8 hours is sufficient. Other nights, 12 - 14 hours is what it takes. At least once a week (usually on Friday night into Saturday) I sleep at least 12 hours. When I am having a "bad" day I may sleep up to 20 hours...but that is a typical situation.
3. Take meds and supplements without fail. There are numerous bizarre effects that show up when I miss them. Bizarre even by fibromyalgia standards.
4. Do not wear tight clothes or belts...unless I want to have severe pain in my middle...for the duration of the time that I wear them plus about another day or so. It can also lead to nausea, vomiting, and diarrhea...though, not always.
5. Avoid new chemicals (including new medications). It seems anything new causes either an allergic reaction or a fibromyalgia flare up.
6. Wear shoes that are flat with a wide toe box. Change what shoes I wear at least every day or so.
7. No pantihose (see #4). Avoid socks that are tight around the top. I have found that diabetic socks have tops that are not as tight as "normal" socks, but they still stay put.
8. Wear underpanties that are hip huggers or bikini panties...not briefs.
9. If wearing slacks, do not wear anything with an elastic waist. It must have a plain waistband that is actually too loose in order to be able to sit in them comfortably.
10. When my skins hurts or feels strange, I should wear clothes that barely touch anywhere on my body...probably a loose-fitting dress...avoid any "extras" like jewelry, scarves, etc.
11. No jewelry around my neck or wrists. Light-weight earrings for pierced ears only. Nothing heavy or too dangly.
12. Wear sunglasses. Light of any kind is very painful... especially if on the verge of or in the middle of a flare-up.
13. Have dimmer switches in every room of the house. See #12.
14. Avoid clothes that are uncomfortable, i.e. bras, tags on the inside that irritate, etc. These little things add unnecessary stress to daily living...can be the "final straw" that pushes me across the line to a flare up.
15. Learn and respect the early signals of an impending flare-up. When you recognize what is happening, take life very easy until the symptoms let up again...plus at least one or two days.
16. Find what works and stick with it. My chiropractors and I are like family after all these years. They know that when I call and say I need to be seen...that tomorrow is not what I mean. They have helped me through so many situations and kept me able to function at work for all these years with minimal loss of work time. I cannot say enough good things about my chiropractic care.
At one point, I had an awesome massage therapist who was helping me immensely. Unfortunately, he and his family moved across the country...far, far away. I have not been able to find another massage therapist who is able to achieve the same results. I so with he and his family would move back here!
17. Reduce stress in your life. There is good stress and there is bad stress. Either kind requires my body to respond.
Some stressors are out of my control, i.e. weather changes, dramatic temperature changes, pollen count, changes in the workplace environment, my kids getting married three weeks apart, the birth of grandbabies, my children's growing pains and crises, etc.
Other stressors are completely in my control, i.e. sending Christmas cards, throwing parties, attending parties, shopping, going to bed late, traveling long distances by car, etc.
Find what can be eliminated (sending Christmas cards) and eliminate those things. Avoid or reduce exposure to as many of the remaining ones as possible.
18. Find something that you can do that you truly enjoy. I love watching movies and certain television shows. I can watch old movies and reruns of NCIS and Charmed for hours...and sometimes I do. I love to read, but can no longer hold a book for long periods...thus, I have discovered audiobooks.
19. No every symptoms is always fibromyalgia. It is important to make sure that any new ache or pain is not something else before I just chalk it up to a new fibromyalgia symptom.
Fractures in the small bones of the foot may or may not cause severe enough localized pain for me to think it is truly broken. However, three times in my life that was what it was.
Abdominal pain is not always fibromyalgia either. Once it was thought to be my gall bladder. After that was removed and the pain stayed, they did a cardiac workup and then a full GI work up. It is now a year later...and the pain still comes and goes. My doctors do not think it is "typical fibromyalgia" pain. They want it to go away or they want to know why it is there.
Most of my headaches originate in my neck and back or from eye strain...not fibromyalgia.
It is important to know one from the other. If it can be "fixed", fix it. Do not suffer needlessly.
20 Stay well hydrated. I have noticed that if I "am a quart low" on water, my joints hurt more, I have more stiffness and achiness. When I drink lots of pure water (not tea, coffee, or soft drinks), I sleep better, I rest better, I am not as stiff and sore upon awakening, and I function better throughout the day.
You may be wondering what the consequences are of breaking these rules. Believe me, the consequences are sure and swift. The fibromyalgia flare up is always just one or two broken rules away...sometimes even bending the rule will cause a flare up.
I hope these rules can help someone else who is just starting their fibromyalgia journey. It has taken me a number of years to determine exactly what my body demands and what it will allow. I have noticed that some of the rules have modified a little as I have grown older.
While fibromyalgia is supposedly not a progressive disorder, I will say that I have noticed the rules seem to be "tightening up" as time as gone on...particularly the ones about exposure to new chemicals either in or on my body, i.e. medications, shampoo, hair color, lotions, face and body cleaners, make up, etc.
Zona B. Taylor
Fibromyalgia since at least 1987
What is the Meaning of Recovery?
|Posted by: livingwithcfsfibro
May 11, 2012
This is a great discussion, and while I wrote an article (http://livingwithcfs.com/chronic-fatigue-syndrome-fibromyalgia-meaning-of-recovery/) on the topic of how we define "recovery" from CFS and fibromyalgia several years ago, I find my views constantly evolving. I think it's important to maintain hope that there is the possibility of improved health, if not true "recovery" from this illness. However, we need to be mindful of implying that recovery is a "choice" and something we have control over, without acknowledging that there is are a wide range of severities and outcomes in this illness, and that there is a huge number of people for whom recovery remains an impossible goal. Not to do so shames the person who "hasn't recovered" and this shame is no different (and no less painful) than that inflicted by those who don't "believe" CFS is real and that sufferers have somehow brought it on themselves.
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