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Adrienne Dellwo

Cure vs. Remission With Fibromyalgia & Chronic Fatigue Syndrome

By September 6, 2010

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Do you think fibromyalgia and chronic fatigue syndrome can be cured? Certainly, some people who used to be seriously disabled from them are now living symptom free. Some say they're cured, while others say they're in remission.

So which terminology is correct? Right now, there's really no way of knowing. In the absence of reliable diagnostic tests, we can't prove that anyone has these conditions. To me, that means we can't prove someone doesn't have them, so I'm not comfortable using the word "cure." Sure, it's possible that someone who once had high Epstein-Barr titers, for example, may have test results showing levels have dropped significantly, and there may even be signs that the immune system is working efficiently (i.e., normalized T-cell and NK levels), but we don't know what might happen down the road if that person comes down with a serious viral infection -- will it trigger a relapse?

I've been called a pessimist for saying I don't agree with using "cure." I call it realism. How often have all of us started feeling a little better, especially early on, and gotten our hopes up that our illness was going away? I remember how emotionally devastating it was when symptoms came flooding back. I think it's safer for me to consider myself in a long-term remission, because then I'm leaving myself open to the possibility that fibro will strike again. Also, if I think my illness is truly gone, I'll lose the incentive to keep doing the things that keep me healthy, thereby possibly causing a relapse.

Once we've got a test that proves we have these conditions, we may be able to tell whether someone is truly cured. Until then, I'll stick with remission, and I'll keep working to maintain mine.

Which term do you think is best to describe someone who's become symptom free? Do you think some people have actually been cured? Have you thought your illness was gone, only to have it return? Leave your comments below!

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Comments
September 6, 2010 at 5:16 pm
(1) KAL says:

Too often the word “cure” is considered synonymous with “hope.” As in “if there is no cure there is no hope.” And the relentless search for a “cure” can lead ordinarily rational people down very strange paths – regardless of the disease in question. People who would not ordinarily be considered gullible can be rooked out of thousands of dollars because they want to believe – they want to be “cured.”

Frustrated with traditional medicine’s lack of appropriate response they may turn to alternatives. The issue isn’t whether alternatives are helpful or not, the issue is that without clinical trials to back up the many claims out there people may put their health in even further jeopardy possibly endangering their very lives.

This applies regardless of whether it is overloading on supplements or do it yourself anti-virals. It isn’t that people shouldn’t take a leap of faith as Dr. Deckoff-Jones so succinctly put it, but that it should be done mindfully with the full cooperation of a competent clinician. As in never give up, fight the good fight, but be realistic about the risks vs. the payoff.

In one of his newsletters, CFS expert Dr. David Bell, talks about the peace that comes with acceptance of disease and the life that goes with it – a variation on the Serenity Prayer you might say. Or you could look at it this way. None of us ever get out of this life alive and life is short no matter what the circumstances. So put a sign saying “Live, Love, Laugh” where you see it every day and mean it . A little too trite for you? So wear a t-shirt that says “I’m hoping to live forever: so far so good.”

Some days remission, no matter how partial or precarious, is as good as it gets.

September 6, 2010 at 5:31 pm
(2) beth says:

Quite a few times in the earlier years I thought mine was gone, only to be floored (almost literally) by the symptoms all coming back with a vengeance. Very depressing it was. So I don’t think it’s gone anymore…I’m just grateful for the times I do feel a better and cherish that time. It helps me get through the hard times.

September 6, 2010 at 7:04 pm
(3) Daniel says:

I suspect in some of our cases, there actually is a cure but it is not exactly something for which you hope. It might be that neurological system was whacked by something (maybe multiple causes), sending it into disequilibrium from which it arrived at a new equilibrium which entails more or less signals transmitted along certain pathways. Your brain sends signals that before would be perfectly normal but now might cause muscles to restrict or modify pain thresholds. The problem is that it’s not just as simple as a neural network. There is too much chemical and biological complexity to work it all out for each person. It might be that we need to essentially zap the pathways again and retrain them. Only the only way I can think of to do that (and it is pretty clumsy at that) would be painful.

I don’t think this is because we have some virus. Perhaps many people with chronic fatigue syndrome have a virus but our symptoms are not all clustered like chronic fatigue syndrome. Some of us may have chronic fatigue syndrome as well, and nobody can argue we don’t struggle with fatigue one way or another (even our distinguishing insomnia causes fatigue), but we also have many other disparate problems that really only seem to point to a systematic disorder. I personally think most of us simply have neurological systems that don’t work as they developed to work when we were children. Neither do I think it necessarily is genetic.

September 7, 2010 at 10:56 am
(4) KAL says:

Daniel I suspect your remark about genetics is kind of like the only people who do not believe CFS is a horrible disease are the people who don’t have it.

For those who a doubly cursed with having to watch a child or children suffer through the same disease that ripped their life apart – they do question a genetic link. Autoimmune diseases can be genetic and so might immunological defects. There is much that is unknown.

As for a viral association vs. say Dr. Jason’s kindling theory or Dr. Pall’s theory of oxidative stress, it is possible that many different assaults can cause the same disease or disease spectrum. Any time you mess with the CNS you can cause multiple problems. Or as you hinted at, people may have different diseases with core symptoms in common.

For those who have abnormal EEGs and qEEGs, there actually is neurofeedback training – assuming your insurance will pay for it. Assuming you even still have insurance. Like some drugs it can potentially ease the burden for some.

Crumbs are better than nothing at all, but that doesn’t mean that they are the best science has the potential to do.

September 7, 2010 at 12:34 pm
(5) goodwillskr says:

“How often have all of us started feeling a little better, especially early on, and gotten our hopes up that our illness was going away? I remember how emotionally devastating it was when symptoms came flooding back.”

That is one of the most difficult experiences! I learned not to “set myself up” for those disappointments. I’m also fairly resentful when a helpful friend tries to offer me a “cure” – usually a supplement of some sort. They really can’t understand that chasing cures can have a negative impact.

I do best with simply adopting the most healthful practices I can. That happens in steps and stages – no miracle drugs or supplements here.

September 7, 2010 at 9:13 pm
(6) gail miller says:

Well finallly someone else is asking the same question I have been wondering about. cure or remission. I have to say remission since this is the second time I have been symptom free of Fibro. You have to really know your own body to tell if you are in remission. The first time I thought cure then 3 months later WHAM! now its 10 years later and its happening again, but now I can feel the arthritis more and a few more things I have that the fibro masked. yea I do feel better and wake up each morning hopeing to go another day without it. 2months and counting.
THANKS

September 7, 2010 at 10:02 pm
(7) MomLady says:

Cure or remission? Is it important what we call it? I think this sums up a constructive approach – “key to his recovery was to adopt a different attitude, which he called a particular kind of acceptance. He described it not as resignation, but rather ‘an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life.’” (http://www.cfidsselfhelp.org/library/14-pacing-success-stories).

I think most of us have had great variations in our symptom levels, but I think recovery or remission are more helpful concepts – if I am cured, then I do not need to do the things that made me better, but if I am in recovery or remission, there is a focus on improvement in health, but with a focus on maintaining it.
SS

September 7, 2010 at 11:07 pm
(8) Cheryl Robinson=Atwood says:

I think in terms of remission and relapse, but refer in terms of “good days” and “bad days”. I agree-if I ever tell myself I’m “cured”, I might get careless, and leave myself vulnerable to yet another relapse. Guarding my health must be a life-long endevour for me-I can’t afford to let my guard down.

September 8, 2010 at 10:59 am
(9) goodwillskr says:

Adrienne, congratulations on your “long-term remission.”

MomLady, well said!

September 9, 2010 at 1:41 pm
(10) Ruth says:

I do use the word cure, I have learned over the years to listen very closely to my body, and I have not had a fibro flare up again. If I feel well doing what I am doing, why would I change that. It does take diligence, to keep on track, but once you get the pieces in place, the outcome far outweighs any percieved sacrifices. If there were a definite “disease” I might think remission, but there has never been a blood test or any other kind of test to prove fibromyalgia as anything more than a wide collection of symptoms, different for everyone.

September 10, 2010 at 3:33 pm
(11) Nancy says:

I have never known anyone who has been cured of CFS or Fibro. There have been some that I’ve heard of that “say” they are cured. But again, what does that mean.

I have had this for over 25 years. I was never bedridden but at a point I was forced into early retirement because of absenteeism.

I will have times when I think I almost feel normal but just as soon as I try to live normally, I get squashed like a bug. This past week is a good example. I got chilled sitting outside too long and the next day I felt very sick with a variety of symptoms. It took about 48 hours for me to get back to what is now my “normal.”

Prior to my 2 back surgeries in 2004, I had an arrogant PT tell me he’d cure my CFS. He had a ludicrous plan. Started me with 30 repetitions of exercises with no warm-up. I ended up in bed for weeks because of that. My specialist wrote him a letter explaining how CFS must be handled carefully.

Anyway, I feel that cured means that something was done to alleviate the disease. How many known diseases actually have a cure? Almost none.

September 10, 2010 at 6:00 pm
(12) Karen says:

For those of us on disability, that is a really hard question to answer. If we say we are in a remission or cured, then we go back to work, and while we can work for a while and collect disability, what happens, when the disability stops, and we get sick again? I am not saying we should lie about how we feel, but knowing that this disease has its ups and downs, should remissions or possibly being cured be an up or down of this disease? I agree, if there is not a test to tell us we have this disease, how can we every tell if it is cured.

September 10, 2010 at 10:29 pm
(13) Deb says:

Remission. I am to tired to comment other than that at this time. Today has been a rough one.

September 10, 2010 at 11:38 pm
(14) Nancy says:

No, I do not think anyone who really has Fibromyalgia is cured. I think that some people think they have Fibro when they really don’t. Then, when they are feeling better, they go around telling everyone they are cured! Then my husband wants to know why I’m not cured. I knew a young woman in this situation several years ago. I’ve lost touch with her but wonder if she is still “cured.” One of the first things I was told by my doctor about Fibro was that it wouldn’t kill me; but, I was never going to feel good again. That is pretty much the way my life has been since 1989. Another thing my doctor said was that he bet that I didn’t get much sympathy because I look so good. He’s right about that too. I don’t go around having a pity party all the time and don’t complain to others either. Therefore, some of my friends are not very patient with me when I have run out of energy and need to cancel attending something that has been planned. I try to explain but I don’t think they understand. Well, back to the original question: I don’t think that anyone is cured of Fibro or CFS.

September 11, 2010 at 7:50 am
(15) karen says:

I went 2 months without any systoms.I quit taking the Lycria thinking I was cured. But a week ago I started the burning in my arm and shoulders again.Seems the fibro went down my left arm. But I have tender pionts all over. Karen

September 11, 2010 at 9:30 am
(16) Mary says:

How can you say cure or remission or even disease when there is no proof that “we” all have the same condition? There are so many variations, symptoms, etc. I know plenty of people who claim and appear to be “cured” through heavy exercise. When I try any exercise outside of a therapy pool I end up in bed for weeks and my pain levels skyrocket. Even the pool exhausts me. All the drugs they prescribe for “fibromyalgia” do nothing for me (or cause bad side effects). So how is it that we have the same condition? I believe the name “Fibromyalgia” and maybe even “chronic fatigue” are what doctors call anything they can’t help you with. I do not deny that our problems exist (how can I when I suffer so much from mine) but I do feel that putting us all together into one named condition gives the doctors permission to stop trying to find out what’s wrong with us and stop trying g even to help. So cure or remission is relative. Maybe someone has a different condition that actually did go away. Maybe if another person’s didn’t it is because it is a different condition or disease. We won’t ever know until we are really taken seriously. Fibromyalgia is the new name for “female hysteria”.

September 11, 2010 at 12:00 pm
(17) Jane says:

Mary, even though you say you’re suffering with your symptoms, then trivialize yourself and all the rest of us by equating fibromyalgia with “female hysteria”. That is such a disservice to all of us who have suffered flare-ups, relapses and remissions only to have it come back with an increased severity. Looking back. I’ve had CFS/ fibro symptoms on and off since the 90′s. It never really went away. But the symptoms recurred in 2007, and have reaked havoc on my life. Making mattres worse was being seriously rear-ended in early 2009. My body hasn’t been the same since. I lost my full-time position at work because of the added restrictions placed on me due to a neck injury. My employer said having me remain on staff, even though I could still carry out essential functions of my job, would place an unfair burden on my coworkers. I don’t think I’ll ever be cured, I just want to be able to manage what’s happened to my body and my mind effectively.

September 11, 2010 at 1:40 pm
(18) lloyd says:

Maybe she has already written a column about it, but I would like to hear Adrienne talk about her improvement in more detail. What things improved first? Did any habits or supplements seem to help? What were the outstanding symptoms that characterized her in her “uncured” state?

September 11, 2010 at 5:32 pm
(19) Jan says:

I had a complete remission from my ME, early on. Then a car accident (I was a passenger in the not-at-fault car). Then after the injury from that was more or less under control, the ME was relapsing/remitting with varying levels of what “remitting” meant. Lately it’s been more progressive than anything else.

And, yes, the labels of our diseases are sometimes used because the doctors don’t know what’s wrong. This is a totally wrong, unscientific use. It doesn’t say anything about the actual diseases, though. Fibromyalgia is a specific clinical entity. And ME/CFS is a specific clinical entity. The two could be related, but they can be distinguished from each other, from wellness, from other physiological (biological) diseases, from depression, from psychiatric conditions, and from “ideopathic” (unknown) conditions.

The ideopathic conditions are not being studied discretely, and this is a problem. Ideopathic fatigue patients may not be as sick as ME patients, but they deserve a proper name and treatments for their disease.

October 4, 2010 at 9:45 pm
(20) CCTVINC says:

I attended the Washington University School of Medicine in the spring of 2010. There I participated in a course that revealed the culprit of Fibromyalgia. The culprit is infectious bacteria that live in the intestine. The Professor/Doctor listed the new treatment that will be on the market soon. The new medication is 75% effective compared to the former treatment that was on 20% effective.

Due to the nature of the infection, I would say it could be treated with full recovery. However, there is always the possiblity of catching the infection again because the culprit (microbes) continue to live in our environment. Cure would mean that they would have to be wiped out world wide.

July 9, 2011 at 8:21 pm
(21) Teresa says:

I’ve had significant improvement by pushing through and doing what I was told (exercise, eat better, lose weight etc) but even with this I still have a an invisible line and I know if I push beyond that I’m crashed for days. At this point the line is further out than it’s been in years but it’s still there. Blessedly it’s out far enough I can do most of the activities I felt like I was missing out on with my family. Hope others can press on to find something that works for them to be a participant in their lives and not a spectator.

December 14, 2011 at 9:52 pm
(22) Theresa says:

I support using the term remission because there is currently no way to know if we are in fact, cured. Just recently I’ve begun feeling much stronger, which is why I’m on this website to determine whether I’m cured. I now find that I can do a days’ work without that terrible tiredness and pain. It’s great, but I’m not ready to consider myself cured. I’m also not ready to ignore all of the positive things I do to manage my Fibro.

August 31, 2012 at 9:23 pm
(23) shirley collum says:

I have had Fibro, CFS, RA, for over 11 yrs. A few days after receiving a flu shot, I woke up not being able to get out of bed, hurting all over, I finally crawled out of bed, to find I couldn’t grasp anything with my hands. I don’t need to tell anyone how many docs I had to go to to even get one to take me seriously, let alone all the tests and humiliation. The only thing that worked by then was Oxy pills with the highest dosage pain patch. In between I tried any and everything to fix me. Back then, I really was told I was in a fixable situation. Then I moved from a large city to a much smaller one and my husband had to drive me back and forth monthly for pain meds. I finally found a local doc to start treatment with Cymbalta and Lyrica, which works along with strong sleep meds, but now I am combating a nurse who is spreading the word that I am adicted to these meds. None of us can win. My Tricare Pharmy now has cut my sleep meds because of this. I read all your posts and am cutting down and hopefully off my meds. I was hopefully looking to see if there really is a remission, and the only way to find out is to get off the meds. I hate it that the medical profession has led me to feel this way, but I will keep you posted. I also have no thyroid from Ca, had kidney Ca, and survived that so maybe I can survive this. Shirley

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