Even in 'Recovery,' Chronic Fatigue Syndrome Symptoms Persist

Any indication that the medical community is doing any kind of research on this illness is always heartening. What we need is inquiry into the true nature of the illness.

It breaks my heart that so many of the studies are NOT focused on discovering the exact mechanisms of Fibromyalgia. To often, they are just old rehashes of throwing something at it, and seeing what happens. It’s a needle in haystack approach, and it seldom gets us anywhere.

What we need is a genetic, chemical, physiological explanation for what is happening in the body at the subcellular level. Seeing THAT kind of research is what really cheers me up.

The medical community is like a person that can’t admit to what he doesn’t know. They are used to being considered the experts, and so they insist on presenting themselves as experts, even when they don’t have a clue.

A recent blog post asked people a similar question and here was my reply

In my opinion any study that uses people who have been told they are ‘medically recovered’ but still have the criteria for their original illness is a study in attitude towards chronically ill people, not the condition they suffer from.

The results don’t surprise me. Two years of living with PVFS and I find myself *adapting* to my condition such that I feel like it has less effect on me as the months go by. And yet I cannot do the majority of the things I could do previously without suffering payback. After twenty fives years I would HOPE that I have adapted well enough that I feel “normal” again, although I suspect, as per the results that my life compared to the normal population will not be any where near as active.

Part 1
After a few initial years of disabling illness followed by a few years of slow recovery, I was able to live a near normal life. I called myself “recovered”, I said that I “used to have ME (aka CFS) and, because I was self employed, I also said that, “I had better not ever get sick because I have no disability insurance.”

I believed and said these things because, as Adrienne Dellwo describes so well, I was comparing myself to my once very debilitated state and not to someone who was well.

In addition, as has also been mentioned here, I had adapted and employed many strategies which allowed me to function well enough to have a very interesting life in which I simply did not want to dwell on illness as I had had more of that than I could stomach. So, I worked the hours I could — overnight if possible as I functioned better then. I worked for myself which allowed me to hide a lot of my difficulty. I usually had my knees up close to my heart – feet on dest, sit on floor, lie down… again, it helped that I was my own boss! I could also sometimes be found asleep on the floor under my desk having been forced to give in to what I referred to as a “mini coma”. When a colleague or an employee came into my office and asked if I was alright I said, “yea, of course, I just needed a little nap.” I had a chronic sore throat and swollen glands, I often ached all over, I was given to bouts of irresistible sleepiness and and my cognition had never really returned to the pre-illness state. I also had long bouts of feeling a particular kind of ill which I knew could be resolved by a course of certain antibiotics although there was no obvious infection. And, finally, it was necessary to drag myself through every minute of life. There was never a time when I did not feel utterly exhausted. That was the new normal.

Part 2

I was in deep denial. I don’t regret it one bit. That denial allowed me to have a great life – an exciting and extremely fulfilling life. Dragging myself through it seemed a fair bargain. And, how could I still be sick when I could now stand in the shower and wash my hair most days? That had become my new test of wellness.

I’ve had ME for over 30 years now and I have worn out to a degree that it is no longer possible to wash my hair in a shower most days. It’s not possible to take a shower most days. All energy must be meted out very carefully. Still, I am looking forward to my next “recovery” which I am quite sure will happen. Maybe I’m still in denial but, hell, denial works for me.

Thanks for sharing this study and your perspective. Also thanks for all you do to educate and inform.

I’m with Christina, wash my hair once a week. Get exhausted from bathing but am able to do one activity a day with care and rest during the afternoons. I use my energy in yoga class and Pilates and Feldenkrais, hoping to keep my body working and moving well. Pilates is the very best for strength and learning how to move without injury.

After thirty years my life is carefully constrained and constructed, as is my meds. Xyrem, (sodium oxybate) helps me to get the deeper stages of sleep, 3 & 4, which I cannot get on my own. This enables me to go back to school and see a movie, sometime. I wish I could shop and cook but that has become my husband’s chore now. Without the help of our grown children I am afraid we’d be homeless. Life is so expensive and this illness adds to it. Just look at what Xyrem costs!

I was diagnosed with fibromyalgia. I definitely had the symptoms of “pain that moves around” and fatigue/nonrestorative sleep. In 2011, I was diagnosed with SLEEP APNEA and started using a CPAP.

I ask myself now… do I have fibromyalgia? Did I ever have fibromyalgia?

The “moving pain” has gone away. Most of my current pain is explained by osteoarthritis. I suspect folks in the study may also have additional health challenges (they often piggy-back with fibro).

Come to think of it, is there anyone out there who “only” has fibromyalgia?

Anyhow, I still have fatigue. I have muscle spasms, but a lot are related to degenerative changes in my back and neck. I sleep… better… but there’s room for improvement.

But then those bad days show up and I’m very tired and achy “all over” but it tends to be days when the weather is variable.

I feel blessed. I still stick to my routines that keep me well… hot showers, biofreeze, accupressure mat, heating pads as needed… BUT, I’m no longer desperate for noon to roll around when I can take another pain pill. Instead, sometimes I skip the second dose. Never used to be able to do that! Now, if I DO take the 2nd dose, I’ve found that I tend to be more active — exercising (never would have imagined I could even two years ago), doing the dishes at night or just generally “getting things done” in the evening.

Wanted to add to my last comment that getting to bed on a regular schedule may be the one thing that makes the most difference for me.

Secondly, I learned how to pace my activities using a timer when I was really bad. I still “do 10″ — put 10 things away, do 10 dishes, limit myself to 10 minutes of activity. It’s quite productive and I don’t feel overburdened.

I was finally diagnosed in 2001 with CFS, but it goes back to 1995. I am in remission now, but only about 75% functional if, and only if, I pace myself and not overdo anything or it is back to couch time for a day or two. It is good that they continue with the research as there is a lack of understanding of the impact of these conditions on people.

I despair of ever getting well! I’ve been diagnose as suffering from Fibromyalgia but by far my worst symptom is Chronic Fatigue. I’ve given up!! Lyrica worked at first but two years on & I’m back to square one!
I still take it but the unrefreshing sleep is so wearing!
Any ideas? I’m trying Pilates + I try to do one thing everyday that takes me out and about!
Nobody understands! I look alright therefore I must be fine!!

I was diagnosed 6 years ago and I agree very much with this artical. Often I consider myself in remission when I compare myself the worst that I have been in the past. Heather, please don’t dispair.
Here is a few of the things that have helped me :
-While working on a project, wether cleaning house, yard work, etc…when I get to the point that I tell myself just a few more miniuts, and I’ll be done, NOW is the time to stop. Those “just a few more min. usually ends up being the point that I realize I over did it and have to deal with the consequences.
-Water arobics does wonders. I started doing arthritc water class and as I got better I was able to progress to the more arobic water classes.
-Finally, find ways to relax, deep breathing when you start to feel stressed, 15 min. power naps.

By following these guild lines, I am able to work part-time and go to school part time.

Oh yeah, going to bed at the same time helps
Take care fellow fibro friends

, the best thing I have discovered that works wonders for me
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I think the term remission must be relative to how bad we were before. I have never had a full remission; moreover, I never know how long having more energy will last. I have had Fibromyalgia for about 30 years.
For me, it was a kind of gradual noticing that my muscles didn’t respond like other people’s muscles. I am sure there were other symptoms, but I have always had problems with my back and neck, so I got used to pushing through the pain. For 15 years, I struggled with the diagnosis of depression; and, I thought my fatigue was due to that. However, after reading Teitelbaum’s book From Fatigued to Fantastic, I realized I had most of the Fibromyalgia and Chronic Fatigue Symptoms. After I went to a doctor that treated me with the right hormones, supplements, and medications, my depression finally was gone. Like Greybeh says, who has only FM and CF? These illnesses can be complicated with many other conditions. No wonder we never feel fully well.

I am thankful I have been learning to pace myself to get some thing done around the house. When I sit all the time, I only get more tired. I had hip surgery last December, and I had to gradually add small jobs around the house. Some days are good, some better, and some are rest days. I think it is less depressing when one realizes it is OK to rest. I used to feel so guilty, but I have given the guilt up. It is a waste of mental and emotional energy to bash oneself over an illness that leaves one deeply fatigued and hurting.

I’m recovered enough to go ass-to-mouth on my girlfriend.

I’ve been bedbound, crawling to the bathroom and stuck in bed so sick, with such scary and painful neurological symptoms i couldn’t sit up to say goodbye to my boyfriend when he traveled. I’ve had years where I’ve worked nearly full time and had a pretty active social life; I described my illness as ‘largely in remission’. A year ago, I crashed and was as totally disabled and sick as when CFS first started nearly 20 years ago.

Go figure? I would do anything to go back to that ‘largely in remission’ state now! When i’m this sick is when I research, reach out and look into the latest treatments, like gcmaf. Otherwise, I can live in a bit of denial… The minute a really bad period is past, even for a few hours, I ‘forget’ to a point, I think it’s a coping mechanism. The extremes our bodies will go to without any kind of solution or medicacal intervention possible is shocking and anyone who lived it for a day would never, ever doubt the severity of this illness.

I’m for who has just fibro! I found out recently that my stenosis in my back is exacerbating the pain in my whole body. I would not have believed it. When I started going to the chiropractor my pain subsided when my back felt good. Problem is I have a really messed up back so keeping all the vertebrae lined up has turned out to be a challenge. The fatigue is what really gets me, cause you can’t do anything about it. If you are in pain you can take a pain pill but if you are tired all you can do is rest and wait. I was diagnosed with Fibro over 25 years ago, but it is only recently that it has become overwhelming. The days I’m exhausted I think it will remain that way, but it never does, and the days I feel good I think it will remain that way, but it never does. So you gotta go with the flow unfortunately, but isn’t that life? No guarantees, just have to do the best you can, put yourself as the priority if you can. My husband tells me I do too much, he is probably right. But it is difficult to not. I will definitely take the advice from above (sorry I forget who said it) and do things in 10, that sounds reasonable. Thanks for all your sharing, it does help!

I’ve had symptoms of Fibro, Myofascial, PTSD and other illnesses since I was in my teens. My body finally blew up on Aug 26, 2007 and I couldn’t move. I haven’t been able to work since however, over the last year I’ve considered myself to be in remission. By that I mean that my pain medications and other medications almost totally control my symptoms. I still occassionally need pain meds for break through pain and I pay more attention to what my body needs.

I have a long laundry list of meds for pain, restless leg and body muscle spasms, depression, anxiety and so on. I cannot function at the level I was at before that day in August but I’m out of bed, out of the wheelchair and able to care for myself. To me this is my remission,

I have had ME/CFS, marking 26 years this summer, and have recovered or in remission since beginning the use of Xifaxan (rifaxamin) last October. After using a treatment dose 3X, getting better after a few days of use only to relapse after going off of it each time, I researched and found that it is used as a maintenance drug for hepatic encephalopathy and asked to take it daily. My gastroenterologist agreed as did Dr. Andreas Kogelnik, my CFS doctor at the Open Medicine Clinic in Mountain View. The treatment dose is 10-14 days of Xifaxan 550 mg 3X day. The maintenance dose is 2X day and I go up to 3X day intermittently if I feel symptoms returning.

With so many of us having Irritable Bowel Syndrome (IBS) and the recent, definitive research showing that a very high percentage of people with IBS have Small Intestine Bacterial Overgrowth (SIBO) which Xifaxan treats, I think my experience may be seminal. Because while some CFS doctors are experimenting with Xifaxan, including Dr. Peterson, as far as I know so far, I am the only CFS patient who has been put on maintenance Xifaxan and continue to do well.

I have been trying to get the word out about this so more CFS people with gastro symptoms have the opportunity to try it and so the manufacturer will donate Xifaxan and eventually get enough anecdotal evidence to do an actual trial. It will give me such joy to hear of others getting better too! It would feel so good to have my wonderful experience benefit as many people as possible! And I would feel that my 26 years of being bedridden, housebound, and life-less will have been worth it.

If there is anything you can do to get the word out on this, please feel free to contact me at siebertesther@gmail.com. All the best to all of us, Esther

I got CFS in mid-1988 at the age of 36 years old. At first it started with a combination of symptoms. The early symptoms were sore throat, swollen glands, profuse night sweat, short-term memory loss. As these symptoms advanced, the profound fatigue, cognitive dysfunction, and the “walking in the fog” set in. I would walk slow even when my brain told my feet to walk faster.

Over a period of three years, the “walking in the fog”, sore throat, and swollen glands went away. Since I got sick, I am about to the 80% level of my pre-CFS self in terms of fatigue as long as I pace myself. In other words, when I exert myself I still “crash and burn.” The night sweats continue to this day and still can be profuse at times.

Although I have improved significantly in my cognitive functionality and recovery of short -term memory (hard to quantify here), there is no way I could work in my old job as a Computer Programmer/Analyst. That is, I barely have the functionality to do even a marginal job which is bad in that competitive profession. I still have the problem of learning how to do things and totally losing that knowledge later. Even that requires a massive effort.. To me, the worst part of this disease is being robbed of my capacity of doing the work I so much enjoyed doing (and being paid well for doing it).

One more thing subtle thing about CFS with me is that it left me with impaired judgment which tangles up my life a lot.

I think I have both recurrent major depression and chronic fatigue that developed after a car accident and a few related surgeries. I also developed fibromyalgia. But the worst of everything for me is the exhaustion. I just went through a horrific depression over late winter/ early spring. I started practicing yoga and meditaition and gave up caffeine and started to feel better and better, which I usually do, by sometime in June.

However, I notice that though I do not feel seriously depressed anymore or at all most days, I still have lingering fatigue and wanting to not do much but lay on the couch and watch movies. I eventually get up and get going on what I have to do and some of what I want to do, but I’m not fully functional anymore. Of course, this makes me depressed and can trigger depresson so I am trying to just accept it.

I don’t really believe there is a fully recovery from fatigue unless you really do a lot of things for yourself to regain that nugget of ultimate health that still exists with in the mind and the body. I am still working at it.

I love the 10 thing rule. I do that often. I didn’t know anyone else though about it. I came up with that idea for myself a few years ago and have been recently employing it more in order to push through things I don’t want to do, but could make some progress at if I extended myself in a way that is not totally overwhelming.

My brain shuts down a lot too and so larger tasks that are never quite finished due to fatigue anyway, are best handled by just taking ten actions towards improving the situation. Often, I find this elevates my brain a bit and I can do more. Sometimes, it’s the 20 thing rule.

Good luck to you and everyone.

Does it really help anything to keep the need to be “hopeful” above the need to be truthful and to see things as they are when talking about things like this? Is that really functional? If these people are still sick, still significantly impaired then they are. That’s truth. I’d rather have reality and truth than the need to continually look for hope that may not be there. It is a long, hard haul with this illness. Reality and truth are easier to take after 20 years than false hope and optimistic comments that are a departure from what the actuality is.