Does anyone get periodic random breaks in symptoms?

[Swim15]

I was just diagnosed but have had CFS for an excruciating 10 months. Don’t know how people make it years.

Over the course of that 10 months I have had two 7-10 day remissions of ALL symptoms and maybe 3-5 that lasted around 24 hours or less.

I could feel things changing and lifting over the course of about an hour each time and then was in pure bliss being back to myself (energy, sex drive, general feelings of wellbeing and excitement for life).

Not sure if this should give me hope or not but it’s horrible to return to normal just to realize how bad I am on a regular basis. Anyone else have an experience like this?

 

[Tiffyshea]

Yes, mine seem to roller coaster with my ability to perform some level of activity... I've even gotten up to feeling totally normal except for an inability to work out, and then I'll crash and I never know how long the crash will last before I can function again.

Crashing again is always terrible because I start to think I'm better.

 

[Swim15]

Yes, mine seem to roller coaster with my ability to perform some level of activity... I've even gotten up to feeling totally normal except for an inability to work out, and then I'll crash and I never know how long the crash will last before I can function again.

Crashing again is always terrible because I start to think I'm better.

Yeah I feel you on that. Feeling horrible all the time would almost be better than false hope but I guess I’ll hold out that some hope is better than none

 

[Seven7]

Yes, I consider myself remitting relapsing. The last relapse left me in a more permanent cfs state. I used to get remissions with my periods. Now only get remissions with colds and viral infections ( I went kareoking with zica!!!)
I used to ask myself how I will make it, we get better at managing energy, we learn to devide big tasks... the least damage you do early on I think the better.
Best of luck! But there is hope and a lot of people doing better. Hang in there!

 

[Seadragon]

Yes, I consider myself remitting relapsing. The last relapse left me in a more permanent cfs state. I used to get remissions with my periods. Now only get remissions with colds and viral infections

@Seven7 Me too. I don't understand the feeling better with periods. Do you know why that is? I'm not feeling temporarily improved for a few days much now I am perimenopausal unfortunately. I'm badly struggling with severely exacerbated fatigue/energy loss during the second half of the month these days as well as awful mood swings (can't tolerate HRT)

I also feel somewhat improved with mild colds or throat infections (but not flu). Again the improvement is less noticeable than in previous years but then my baseline is a lot lower than it used to be since a very bad relapse 2 years ago.

 

[Seven7]

Do you know why that is?

No idea, doctor could not answer either. I imagine some hormone increase. I am sorry about your relapse and I hope you get better soon. I am trying to follow all the people that got better/cured and how they did it. Trying to find what works for me. I am very high functioning at this point.

 

[Wishful]

Periodic random breaks? That sounds a bit contradictory. I did get several temporary remissions (lasting less than a day), but I'm pretty sure that they were totally random in time rather than spaced out periodically. I didn't get any inexplicable ones after the first year or two, but several years later I managed to trigger them (unintentionally) with prednisone, cumin (cuminum cyminum), and T2 (3-5 diiodothyronine). All three triggers only worked a couple of times, but never triggered remission again after that.

I think of these remissions as an electrical switch between two states (fully healthy and full ME). At some point in our lives, the switch becomes faulty and starts switching states from minor jiggling (think immune system activating event, such as infection) <insert mental image of sparks and smoke and noise of arcing>. At first, it is possible for minor jiggling to switch us back into the healthy state, but the switch keeps snapping back to ME. It gradually becomes harder to make the switch go into the healthy state <the electrodes get all crusty and burnt>. If this was an electrical switch, I could take it apart and clean it... I'm hoping for switch cleaner in pill form.

 

[EddieB]

. Anyone else have an experience like this?

Yes. And it makes it extremely difficult to tell whether you’re doing something that helping, or just a coincidence.