ME/CFS symptoms over time

[Matthew_2]

Does anyone know of any research on the course of symptoms over time? Or, absent that, does anyone have any informed opinions about how ME/CFS plays out over time?

Obviously, there is no cure yet; and, as everyone knows, there seem to be so many different types of symptoms, treatments, etc. - all of which could produce individual effects. However, are there any general trends over time?

To personalize this...I had been getting weaker after my cancer treatment over 4 years ago, but then, this past March, I got some kind of virus, ended up in the ER twice, and live each day like I have the flu: bad bilateral joint pain, daily exhaustion, daily stomach issues, and horrible sleep.

I am wondering: what do other people go through who have had this a lot longer? Did they get worse, better, stay the same?

Thanks,
Matt

 

[Strawberry]

This is a really good question. I'd love to find out that doctors or researchers are tracking symptom changes!

I wish I had time to properly post, but I don't. So in a nutshell, my stomach and neuropathy symptoms are much better than they used to be, but my fatigue and ability to stand/walk much are drastically reduced. Long time sufferer... But on the positive side of not being able to stand or walk more than a block, I'm no where near as sick as I used to be.

 

[Wolfcub]

I'm sorry you have this at all @Matthew_2 I can hope you may improve as time goes by. I can't dismiss that possibility.

I haven't had this for long -19-20 months only. So I am probably not what you asked for.

In my own case the symptoms were more or less relentless for about 4-5 months from the onset (Spring 2018)
Occasionally I'd get "eye of the storm " moments of almost total normality-and they didn't last long; the first one lasted an hour, then that became half a day if I was lucky, every now and again (for no apparent reason.)

And re: "no apparent reason" I mean exactly that, as I started a detailed journal of everything I did, ate, supplements, how I slept, weather, temperature, etc
Taking stuff made little difference to me (supplements, herbs etc which had always helped before.)

As last year wore on, the remissions lasted longer. I could get a day or two of almost normality, then that extended to a few days.
....always followed by a crash right back, which could last either days or weeks..
But I did notice that even in the crashes I wasn't as bad as I had felt in the first weeks.

Then the winter last year I had more good days than bad, but there were always crashes at times.

That went south in the Spring. Yet with summer, again -more good days than bad.
Repeat: this Autumn more crashes....now it's more "winter" it has been easier the last 3 weeks or so. Although the last 2 days I have felt a bit "crashy".

I don't think (fingers crossed) crashes last as long as they did, and the symptoms are not as severe.

It surely hasn't got up and gone ! But there has, in my case, been some kind of improvement in that time frame.

 

[ScottTriGuy]

There seems to be a wide variation in how ME plays out: no change from baseline over years / decades; ups and downs with various severity; ongoing decline; acute decline.

For example, I've had 2 complete remissions from mild ME, then had 4 month period sliding into severe, and now have been mild / moderate last 4 years.

 

[Rufous McKinney]

At a minimum, I"ve been chronic Eppstein Barr for 55 years. But I was the sick kid, severe food allergies, caught everything, and now here we are. Retired.

So for me, this has been a lifetime chronic situation, which was mild during my working career but gave me issues that got worse and worse gradually, over time. Then, the menopause changed alot of things and the sleep problems, body repairs impaired, and too much stress (I am working with lawyers, extreme duress).

I then got MUCH more sick with a substantial worsening, following another extreme stress event and two severe episodes of gastroenteristis of some type. That didn't seem normal. And perhaps I was additionally poisoned by toxins. And the stress.

Life would be better if was still only just mild and low energy and inconvenienced and not leaping about like others. Now- its really hard.

 

[Judee]

I do think age has something to do with it. I've had this for 40 years but still managed to get some things done in my 20's, 30's, and 40's but of course with a lot of push-crash. Now I struggle to get anything done and the things I do do are all push-crash.

But on a more hopeful note, there are more ideas floating in the blogosphere so hopefully more chances that you will find something to blunt those affects. I'm trying some of Dr Chia's ideas right now. (I'm not a patient.)

Plus, we have more research happening, though to be honest it doesn't seem like we are gaining much by way of ME/CFS doctors. I wish the real ones could clone themselves.

 

[Wolfcub]

I do think age has something to do with it.

It could have...but I wonder sometimes.
I was 64 when this first hit me. I was fit, fine, and strong before that. Now I would class myself as pretty mild-ish (though the first 4 months or so were much worse.) So it seems that despite my age (66 now) I still have managed a little improvement in 20 months.
I am wondering if there are different basic levels of this illness. Or "types".

 

[wabi-sabi]

I am definitely getting worse with time. When this started i was able to work fulltime. Now one day a weak does me in. When it started I could walk-now I use a wheelchair. I am feel like I am gradually loosing my mind. I used to enjoy creative writing and journaling, but I just can't anymore either. I don't knit anymore- too hard to read a pattern. It's getting harder and harder to read. I am afraid how much sicker I will get. Sometimes I feel like I am in freefall. Of course, I am living the push crash cycle right now, so maybe it wouldn't be so bad if I cold get off that. I am not yet housebound or bedbound and count myself lucky for that.

I'm with you, I wish I knew the prognosis. But then sometimes I'm glad I don't if I'm only going to decline more.

 

[Sarahloudobby]

Hi. I have had CFS since 2002. I had an initial 6-9 month period of increasingly bad symptoms that left me bed bound (all started from a particularly bad ear and throat infection). Since then, I am luckier than some as I tend to be pretty stable and able to manage my tiredness and other symptoms but every few months I have a very bad few days and have to to retire to bed early every day, lots of baths or try to rest up completely almost like a recharge. My stomach symptoms are generally better since I cut out all red meat and I take magnesium supplements every day.
Wishing everyone a nice week
Sarah x

 

[Rebeccare]

Based on what I've seen here on Phoenix Rising, there is a very wide range. Some people get worse, some people get better, and some stay the same. I don't think there's been any scientific studies done in this area, but it would be an excellent idea!

As for my own experience, my health has been mostly stable over the past 12 years. There have been some ups and downs, but the baseline has remained more or less the same. I have noticed that some of the symptoms I had in my early years (constant low-grade fevers, swollen lymph nodes, vertigo, aches in my muscles, joints, and pressure points) have lessened a great deal, although my fatigue is more or less at the same level. I should also mention that I haven't had any major illnesses or medication changes in this time period that might cause my symptoms to get worse or better.

 

[Blue Jay]

After a bad three or fourth months at the start, I settled into a five year phase of mild symptoms. Then I had cancer and following the treatment became worse but not severe - I'd say mild/moderate. Various periods of prolonged stress and coping with other family illness and problems led to me deteriorating and developing new symptoms. I'm now moderate sometimes verging on severe and am much less mobile. It depends, I think, so much on individual circumstances and what triggered the condition in the first place. I'd had several strange virus infections and other traumas over the years.

I hope you reach a better phase soon, Matthew, and that goes for everyone here, of course.

 

[Plum]

10 years for me since I had to quit working and became very ill. In the beginning I could cook dinner for my partner and I and take the dog for a walk. I was probably doing too much and pushing myself but I kept this up for a few years. I was able to go to a dentist or Dr appointment and get through it ok. I could get on the bus to come home and not crash.

My health has declined over the 10 years. I am now doing a lot less. I struggle to make food for myself daily. I struggle to get my laundry done. My partner has to do all heavy chores like the dishes, emptying the bin etc.

I have developed multiple chemical sensitivity. So a lot has had to be gotten rid of in the house and I can't have much contact with others as they make me sick.

My gut issues were bad to begin with, now they're very bad with multiple conditions diagnosed. I have a long list of allergies now.

But I manage to take care of myself with careful pacing. And I've learnt a lot of tricks around how to take care of myself. Like quick meals that are safe. How to get clean in various stages etc.

Crashes for me have always been the same. I crash hard for up to 6 weeks with viral labyrinthitis thrown into the mix of everything else getting worse. I have to do a lot less then but I do always feed myself and do the basics I need to.

I spend my days in bed if I'm not doing chores. I have set rest periods of several hours a few times per day. I use ear muffs to conserve energy. And I will often have days where I communicate via text message only.

 

[percyval577]

Here is a recent article. I have forgotten what it says in detail.
Onset patterns and course of ME/CFS 2019

I personally first got worse for three years after acute EBV had ended, then I got very very slowly better, then rapidly better, then somehow worse for one months and then a whoom which even worsened for five years, and finally I suddenly recognized that the course correlates with manganese intake.
So I got first rapidly better again, but relapsed and then got only very slowly better, and now after four years I have found out a plethora of additional influences ... ... and it is unclear to me if they are a real help in respect of the core (along with manganese) or if they are a symptomatical help. I imagine, both might be true, and without them I might not be able to come out of the illness anymore.

Paradoxically, I am not able to work only since I am getting better, my nerves connect to nonsense, maybe like a baby who cannot already move properly. When I felt so bad I still managed to work halftime, split in two times two hours.

 

[LaurelW]

My ME/CFS doctor told me that 50% of us will also develop fibromyalgia over time. I've been sick for 25 years and started getting fibro symptoms about ten years ago after a bad crash.