What is the course of your ME/CFS?

We need to desensitise the immune system to good things so that it can deal with the bad things, don't we?

And to stop overreacting to the good things.

 

But most of us are dealing with the bad things okay, I think. We're not getting repeated bacterial infections or anything else that might indicate our immune system is actually failing to protect us form new infections. At least not the majority of us (some might).

 

Just goes to show how the disease shifts. If you'd have asked me a month ago, I'd have said the same.

This is the first cold I've caught in 3 yrs, so my own system is normally pretty active, and immune supplements like Vit C are normally a disaster for me, increasing inflammation and giving me a fever. The only nod I give to supporting immune function is half a dose of Lactoferrin every night.

That's probably why it took me so long to get over this: it runs counter to what I would normally do for myself. I finally realized I felt like I do when I forget to take my Lactoferrin. Took extra, waited; took Vit C, waited; etc. Within 24 hrs of immune support I was up and running again.

BUT as always, we may be talking apples and oranges here, @Woolie.

Regarding immune suppression, I'd also started to note some signs of fungal microbial invasion, showing lower immune function than my normal. I really haven't had issues with bacterial or viral infection, but I have had issues with fungal infection. The defenses involved are different enough, I suppose, to make that possible.

There does seem to be a group of ME/CFSers that catch everything. But I agree it does seem they're in the minority. (Another poll?! lol)

 

The issue for me is that I don't know if I 'catch everything'. My immune system feels like it's always 'on'.

 

I had a major fungal infection in year 2 of my ME when I was in hospital after my overdose, due to either my tube line or whatever they gave me for an infection I got just as I was due to be transferred back to my local hospital.

Sorry to be so vague - it seems clear enough in my head until I try to type it! Anyway, the fungal infection persisted after I got home. It's an infection that is common in hospitals now, and I can't think what it's called.

 

It's really hard to pick from those categories.... I started off mild and for around 5 years was improving slowly (increaseing working hours from 9-3 to 9-4). Then I plateaued, then I had a major relapse leaving me housebound, then I slowly improved for a few years and now i've plateaued again (still housebound).

 

Thrush? Cryptococcus?

 

Possibly thrush? My memory is so hazy. I had a lot of infections in that area after such a large overdose and long-term tube feeding/medication.

 

It hit me like a train and kept on going for around 3 yrs, bottomed out and stayed there for another couple of yrs then I began to improve slowly in fits and starts and sometimes hardly at all for another 3 or 4 yrs. Then it was like breaking the surface and I felt alive again. The first years were free of colds etc, when I had my first cold it scarcely started before it was gone. After year 6ish I got a real cold that lasted for months then I knew things were changing.
The symptoms become life, does it ever really go away?

 

Huh! I caught a cold again this year -- around about the same time. Interesting.

 

Used to be most like option 2 for many years - interestingly I was (mis)diagnosed with MS for a good part of that period - but the last few years it's been more like option 4 so chose that.

 

Now: Progressive relapsing (occasional sharp drops in wellness that are permanent; no remitting phase)

I have been sick for just over 40 years and I have been through periods of each of these stages with the first stage lasting about 15 years.

I believe experiencing PEM over and over and not understanding this symptom led to my ME/CFS becoming worse over the years. No one diagnosed me until I was disabled 25 years later, at Primary progressive.

 

I missed this thread first time around so it's been interesting to read. Not sure I've been ill long enough to decide, but based on current condition I've gone for option 2. The cycle time is loooong though. From 1st being I'll it was almost three years of improvement to get to 80%. Then a relapse this January back to ~30%. I think I've had some small improvements over the last 2-3 months. Certainly the threshold for pem has increased.
I've been pondering progression recently,as I'm running out of months that work will continue to pay me for.

 

Thanks @Trish . I'm lucky that I get full pay for a year, but I've only a few months left. When I was first ill (2016) my improvement was fairly rapid and I got back to work relatively quickly (3mths ish) so this has been a bit of a shock.
I'm 45 so can't see me getting ill health retirement. I do have an income protection plan from when we first bought a house, which we could manage with, but the company has a patchy record when it comes to ME.
I really want to get back to work (don't we all!) . Part time feels like it could be achievable if I continue with small improvements. But I'm very wary of over doing it. I don't want to go through an experience like this year again. I think I could get them to agree to a split between home and office working, they've been very supportive so far. But at the moment, whilst I could do a few hours from home a day, driving to work for a few hours would be too much. I don't really want to start work, even part time, again until I could do one half day in the office a week.
Just have to continue waiting to see what happens. As you know, it's so difficult when you don't know what the future holds.

 

It's hard to say whether my ME has gotten worse over time. There have been plenty of changes--new symptoms or sensitivities appearing, and existing ones disappearing--but overall about the same. Of course, over time, age-related problems are going to appear, and it's hard to know whether a new problem is ME related or not. Another issue is new problems caused by changes in our lifestyle due to ME. If your ME forces you to cut drastically back on a food group, or exercise, or socialization, that can cause changes.

 

Just seen this again. I think it was Clostridium.