Symptom free for 3.5 months. Symptoms now returning.

[kjetilv]

Hello. I’ve been ill with ME/CFS for nearly 7 years. In May things changed for me, I went from moderate-severe to symptom free in the space of a week or so. Why this happened I unfortunately don’t know.

I stayed symptom free over the summer. I started working out, going for long walks every day and really enjoyed doing what I’ve not been able to do for so long. It was unbelieveable and so so nice. A few weeks ago I also started school. The first two weeks at school was very nice. Having the health to stick to a routine again was great.

However, a week ago I started to feel really exhausted, it hit me like lightning after finishing school one day. I slowed down for a few days, which didn’t really help. I decided to push through school Mon and Tue this week, which just made matters worse. The last two nights I’ve slept for 12h which is very unusual for me. Some symptoms have also returned (dizzines, sound sensitivty, tinnitus, heat intolerance and a few more).

I try and not worry too much, although it’s easier said than done. I try and not look at it as a relapse, but hope it’s just a bump in the road. Something I’ll have to ride out with a few days/weeks of good rest, and that I’ll return to being symptom free very soon. I hope this could just be part of recovery, getting a shorter bad period after having a longer good period. But the fear of this being a relapse is tough to bear. Any advice/ideas on where to go from here? Thank you.

 

[Mary]

@kjetilv - my only suggestion is to rest as much as possible and not try to push through at all. Pushing through seems to be the worst thing we can do. I hate hearing this advice myself but it seems to be all we have.

I can only imagine how nice your summer was and I'm sorry it ended in this way! Maybe it would be worth trying again to see if you can pinpoint anything that might have been different last May, that may have contributed to your apparent remission. Anything - a new drug, supplement, new food, new activity, new anything - take care -

 

[bradipa]

Hello kjetil. If it happens to you once, it can happen to you again, so don't lose hope.

I guess my approach would be going back to rest as much as possible, then the next time it happens starting a whole lot slower, introducing one activity at a time, obseving carefully and at the slightest symptom take a step back. Although of course this is damn hard to do, especially when you're young and have been ill for so long. So don't be too hard on yourself if sometimes you oversee the stop sign for just a moment.

Maybe you have someone trustworthy around you with whom you could plan your "comeback" and who is also good at telling you to slow down?

I wish you all the luck in the world.

 

[Wishful]

Lucky you. I've had multiple temporary remissions, but they only lasted a day. For some, the cause was obvious: prednisone, cumin, T2, all of which only worked a couple of times and then stopped working. Other triggers remain a mystery. I still sometimes have better, but not ME-free periods where I can enjoy going for long hikes or whatever, but inevitably return to my baseline ME severity.

I think of ME as a change of state of something in our bodies. For some people, it's like a snap-action switch with a really strong snap-action, so once it switches, it's very hard to switch it back. Your experience sounds more like you have a weak snap-action, or at least a weak factor that switches you into the ME state.

My suggestion is to keep a food/activity/symptoms journal, as detailed as you are comfortable with. Then, if you experience a change of state, or just a worsening of one or more symptoms, you have a chance to figure out what might have caused it. Human memory is just too fallible for this. It may be some change in your diet, which in turn changed your microbiome, which in turn affected ME's mechanism. Without that journal for that time, it's really hard to figure out whether it was a salad ingredient at someone's house, or slight food poisoning from something.

It could have been the extra activity that triggered the relapse, but you didn't mention extra resting before the remission, so I'm less confident that resting will trigger another remission. Most if not all of my changes in ME have come from foods or changes in gut factors.

I think temporary remissions are really important, because they give you hope. You now know that it's possible for you to switch out of the ME state. How to do it and how to remain in remission is still a mystery, but at least you know it is possible.

If you do manage to switch back out of ME, please let the rest of us know, to boost our belief in that possibility.

 

[Viala]

What helped you to achieve remission? Have you changed something later, besides being active? Was there something different on that day at school when you started to feel worse or the day before? I would look into that, maybe there's your answer. There can be a specific trigger, otherwise I think you would gradually feel worse, not suddenly on one day. Food, environment, any type of stress.

 

[kjetilv]

Thanks everyone for your replies. It means alot. <3

I did have an upset stomach last week for a few days, around the time I started to feel ill. I thought then that that was the reason for me feeling unwell, but symptoms have just become stronger after my gut was back to normal. And that has made me think that that isn’t the issue. But perhaps it is? What I ate, I can’t remember…

I didn’t rest aggressively to get into remission. I didn’t push through either. I just gradually increased my activity because I didn’t get symptoms any more. This makes me want to not quit everything I’m doing now, but be more careful and observe how my body responds. I will not push through if I feel symptoms, but I am going to keep giving things a try (as careful as I can).

Snap-action switch seems to be what happened to me when I went into remission @Wishful . If only we could figure out why… But like you say, that’s a very valuable experience, knowing that things can take a turn for the better very quick. On the other hand it’s also scary if things can switch back just as fast.

I am as of now not going to believe this is a relapse, and that things have switched back to ME although that could be the case. I will keep you guys updated.

I discussed my improvements from May in this thread if anyone is interested:
Improving from moderate-severe to moderate-mild | Phoenix Rising ME/CFS Forums

 

[linusbert]

did you change anything? new place? new stuff? new food? new friends? sex partner? new neighbours? drinking different water? tap? bottle? new cloth?

 

[Vladimir]

did you change anything? new place? new stuff? new food? new friends? sex partner? new neighbours? drinking different water? tap? bottle? new cloth?

Hi did - he started school. I read it as the most probable reason.

 

[jason30]

Indeed, something is changed. Think also about your environment; do you live near agriculture? is there more humidity now in the house so that (hidden)mold can grow which means more mold spores? Is there a leak in the house , mold visible somewhere?

 

[JES]

Yep, this ME/CFS is unfortunately very unpredictable. I usually have at least a few weeks every summer when I feel quite well compared to baseline. I still haven't figured out exactly what all the factors are, but heat seems to be one thing that helps or just the sunlight compared to winter months.

The other factor can definitely be sleeping rhythm. I learned my symptoms reduce a bit if I sleep on some weird delayed schedule where I wake up one hour later every day. Even having a few days with sleep deprivation in between seems to help. The worst option for me is trying to maintain a regular 24/7 sleeping rhythm. I seem to only get progressively more fatigued every day with that.

 

[Wishful]

I did have an upset stomach last week for a few days, around the time I started to feel ill.

I'd rank that high on suspects for the cause of the relapse. I recently had a gut problem, possibly a temporary blockage (excruciating pain!), and after that passed, I had more brainfog, lethargy, and muscle aches, and that was made worse by oats, which had been safe before. I think (only two days so far) I've solved that by probiotics. So, I can readily believe that an upset tummy might trigger a relapse, and the ME state would remain even after the trigger was gone. I'd lost a critical fibre-digesting bacterial strain before, which really surprised me, since I didn't think that sort of thing would happen without serious antibiotics.

I strongly recommend the food/activity/symptoms journal. If it was a microbiome-altering trigger, techniques for improving gut health are something you might consider looking in to. Probiotics, prebiotics, different forms of dietary fibre, and avoiding the foods that feed the bad bacteria.

 

[kjetilv]

School is the biggest change, but I was very active in the summer aswell when I didn’t have school.

I live in a 2 year old apartment, close to the sea with a small forest close by. I’m surrounded by nature. The weather is good aswell, sunny and a little warm. So I think everything is optimal when it comes to those things.

It might be the gut issue, or me being too active since I went into remission. Or maybe a different unknown reason.

Today I’ve only been worse which makes me believe more and more I’m back to where I was pre-remission unfortunately. But I now know that I can go into remission fast, I’ve experienced it. So that’s something to hold on to.

 

[Viala]

School is the biggest change, but I was very active in the summer aswell when I didn’t have school.

Could be the microbiome change that started to produce symptoms after a few days, but you might as well have a simple setback that will not last long. It seems that your body is still in recovery and needs some extra care for a while.

I wouldn't underestimate intellectual activity at school. It's not the same as physical activity. In my remission some time ago I also felt very good, I didn't get PEM from physical activities, but regular intellectual was taxing, even if by normal standards it was not a heavy brain usage so to speak.

It is strange because not every intellectual activity is samely taxing, a few other people noticed that as well. Learning and working seems to be more demanding, possibly different part of the brain is used. That higher brain energy demand could also impact your digestion and cause upset stomach.

 

[linusbert]

or me being too active since I went into remission.

overdoing can accumulate and then crash. need to listen to the signs.

but to be frank, i think you got some unrealized trigger. you need to be sherlock now. and investigate the must unreasonable things.
sick building syndrome is a thing. maybe school makes you sick. isnt the first time btw. somehow school buildings tend to have dirty things going on.. some even asbestos and other shit, maybe even mold. and chemicals.

btw, do you eat food at school? school kitchen? water at school?

 

[Vladimir]

School is the biggest change, but I was very active in the summer aswell when I didn’t have school.

Do you really enjoy the school? Are your eagerly waiting for tomorrow's day at school every evening when going to bed?

From my personal experience, my body does not accept any long-term obligatory activity which I do not genuinely enjoy and as a result it quickly translates into another crash. Subconscious and unavoidable long-term stress does nasty things to our bodies.

 

[kjetilv]

@linusbert the thing is that I really did not feel any stop-signs up until that Wednesday when I started to feel very ill. I may have pushed to hard, but it’s very hard to know because I was very active this summer, did lots of activities without any stop-signs. Sure, I felt tired sometimes, but the other typical symptoms had vanished. I feel like I did what was right. Maybe I pushed to hard, but when I was symptom free I thought I had recovered for good…

I ate in the lunch room at school. There’s a worker there who makes bread almost every day.

@Vladimir yes I genuinely enjoy school, and I looked forward to every day. I started going to this very small high school for students who have different challenges, some of them have ME/CFS. There are very small classes, we are between 2-5 people in class, with 10 minute breaks between every school hour. The teachers are very understanding. It’s a great place for me to be. So now that I’ve had this relapse I’m very upset that I can’t go.

 

[kjetilv]

@Viala very good point. I may have underestimated how taxing that intellectual activity was. I had 3 subjects at school, I think I should’ve gone with 2. And on top of this, it was a new surrounding with new people. I think that can take alot of energy.

 

[JES]

It also sounds like you are doing less physical activities than before. Don't get me wrong, everyone with ME/CFS should avoid exercise if it makes them crash, but there are people on this forum who can tolerate exercise. If your ME/CFS is not "classic" a certain degree of physical exercise may actually help you like it does in many other diseases as well.

 

[Wishful]

As JES points out, there's no "one true way" of ME. Some of us--probably the majority--get worse from physical activity, but some do not have that problem, and I expect that for a few people, reducing their activity level might make them worse. We have to figure out our individual sensitivities and responses. Dozens of people might tell you that they got worse from overexerting, but that doesn't guarantee that it was the cause of your worsening. I think we all eventually train ourselves to spot patterns in our symptoms, and get better at judging what we should do and what we should avoid. We have to keep doing that, since ME changes over time, and we have to adapt to those changes.

 

[kjetilv]

PEM is back, so I shouldn’t push through. I’m not sure pushing was the cause of the relapse, but I have relapsed and therefore I need to be careful with physical and mental exertion again. Hopefully I recover to that level where I can go for longer walks again, but as of right now I don’t think that’s wise.