What is the course of your ME/CFS?

[AliceLily]

I don't understand what 'primary' and 'secondary' mean in regards to this illness. So I'm finding it hard to work out which describes me most.

 

[Corazon]

I chose the second one.
Secondary-progressive (relapsing-remitting, but general course of worsening)

My envelope keeps shrinking but I relapse and remit within the current envelope for some time before another general downgrade. The envelope is never increased. This has been a consistent pattern throughout the course of the disease for me, which began in childhood. It is largely responsible for both how I was psychologized and also how I have coped/survived for a lifetime. Those periods of 'remission' within envelopes are precious and I am thankful for them.

 

[JaimeS]

I don't understand what 'primary' and 'secondary' mean in regards to this illness. So I'm finding it hard to work out which describes me most.

1. Secondary-progressive (relapsing-remitting, but general course of worsening)
   
   
2. 
   Primary-progressive (gradually worsening with no relapsing-remitting pattern)

So the difference is basically that in 'secondary progressive' you have periods where you feel better and periods where you feel worse, but your overall 'picture' is that you keep getting worse if you were to 'zoom out'.

Whereas in 'primary progressive' you're sliding downhill without any periods of better wellness. Just a little worse, and a little worse than that, and yet worse again, over time.

 

[AliceLily]

.

1. Secondary-progressive (relapsing-remitting, but general course of worsening)
   
   
2. 
   Primary-progressive (gradually worsening with no relapsing-remitting pattern)

So the difference is basically that in 'secondary progressive' you have periods where you feel better and periods where you feel worse, but your overall 'picture' is that you keep getting worse if you were to 'zoom out'.

Whereas in 'primary progressive' you're sliding downhill without any periods of better wellness. Just a little worse, and a little worse than that, and yet worse again, over time.

Thanks @JaimeS I see I missed registering the explanation within the brackets first time round.

 

[MErmaid]

There seems to me a difference between a variable, fluctuating pattern and what's usually meant by relapsing-remitting, which is true remissions (illness gone) in the remission phases.

I think I'm unusual in that for the first 23 years, I had a true relapsing-remitting patterns.

Relapse: in bed, unable to read or move.
Remission: riding my bike about for fun and exercise.
​

(and no, during the remissions, there was no PEM).

@Woolie
I find your story fascinating. Were you able to narrow down any common denominators that might account for the switching from relapse to remission, and vice versa?

 

[Woolie]

@Woolie
I find your story fascinating. Were you able to narrow down any common denominators that might account for the switching from relapse to remission, and vice versa?

Yea, infections, infections, infections. Sometimes the whole family would catch some stomach bug, and I'd initially have the same symptoms, but then they would recover and my symptoms would just get increasingly severe.... and then the full CFS symptoms would kick in (raging headache, burning glands, feeling like a slab of concrete was laying on my ribs). Then it would just be a matter of waiting it out, nothing I did seemed to affect the course of the episode.

A couple of times I thought exertion might have contributed. Those were times when I'd been travelling or overdoing stuff. But at those times I was also probably exposed to more infections as well, so it wasn't clear to me what was doing what.

Now I no longer get full remissions - I always have to be careful. And now exertion definitely brings on PEM, every time.

I'm a weird case though. An immunologist I've been seeing is exploring whether I might have an autoinflammatory disease. For years and years, my bloods showed nothing, but now they are throwing up markers of inflammation during severe spells - high platelet counts and raised levels of C-reactive protein (also raised CD4+ and CD8+ T cells).

I know my pattern is a bit unusual, but I would recommend to anyone with MECFS to make sure you get your blood samples taken at your worst. A lot of things my bloods showed recently were because I didn't wait till I felt okay to go for testing. I crawled there at my worst (laid out in the backseat of our car). Even if it doens't lead to an actual diagnosis, the validation of seeing real evidence of your illness is incredible! It also had a profound effect on my doctor, who now treats me with much more seriousness and respect.

 

[Woolie]

I think this is a difficult question, and I am not sure that the term "true remission" can easily be understood. People clearly use the term differently. I think the most helpful approach is to try to understand how it was used in the literature surrounding the so called Royal Free outbreak (so called because it seems that there were similar disease processes occurring within the local population, and the Royal Free probably only represented a concentration of cases).

@chrisb, I thought the term came from MS, where the person is asymptomatic during the remission periods?

However you define it, relapsing-remitting does imply more than "some days are better than others". It has to mean a really dramatic reduction in symtomatology, a return to near-normal functionality, and one that is sustained for months, not days.

 

[BruceInOz]

The optimist in me chose 1 over 2 since I'm still hoping the slow worsening of the last couple of years is just part of a long time period fluctuation. Sick for 23 years.

 

[Ryan31337]

I think I'm unusual in that for the first 23 years, I had a true relapsing-remitting patterns.

Relapse: in bed, unable to read or move.
Remission: riding my bike about for fun and exercise.
​

(and no, during the remissions, there was no PEM).

I can relate to this but PEM and the illness were still there, just so mild that it took several days of high exertion to trigger it.

During first remission I could go all day at work, play sports, go rock climbing, that sort of thing - only when I tried to do these things 2 or 3 days running would I get symptomatic.

During second remission this tolerance reduced to being able to still do these things for 1 day but getting PEM as a result.

Now after a further relapse I can't physically do these things without immediate autonomic problems & fatigue - so I guess by previous definition I'm still in a relapse phase (or my remission is more limited!).

 

[Jan]

@chrisb, I thought the term came from MS, where the person is asymptomatic during the remission periods?

However you define it, relapsing-remitting does imply more than "some days are better than others". It has to mean a really dramatic reduction in symtomatology, a return to near-normal functionality, and one that is sustained for months, not days.

That's what I understand remission to mean. I'm really uncomfortable with having to vote for something that says remitting. (I voted for option 2) I have never been well enough to return to work, travel very far even within the UK. My 'remissions' mean I am not bed-bound, but still too unwell to go shopping for a day. A well person would consider this level of health appalling, not remission.

I always get seasonal fluctuation too, feeling better during the summer months and crashing around October time.

 

[Jan]

It's difficult to tell if other conditions are caused by the ME, such as trigeminal neuralgia, which began after Tetanus/polio vaccine, neuropathy, under active thyroid and O/I. I had none of these conditions when I first got ME.

I have a heart condition, (leaking valve), which I think may have been caused by the virus that started the ME. There's no way to know for sure though.

 

[MeSci]

Sorry if you've answered this before, @JaimeS (my short-term memory is terrible at the moment) but is there a reason you chose to go with the MS definitions? You say "expediency" but I can't relate the definitions to my ME.

It varies so much over time, and I don't want to think that my current state is permanent, especially as it may relate at least partly to my teeth, which I can't afford to get fixed yet.

(I still haven't voted, partly because I'm having to use my lucid periods for more vital things!)

 

[JaimeS]

@MeSci -- I used MS definitions for, as I said, swiftness. Our disease has been described before as relapsing-remitting, as has MS. I've also read a paper that discussed similarities and differences between the two conditions.

It varies so much over time, and I don't want to think that my current state is permanent

As I mentioned above, MS patients, too, find that they may fit a certain category at one point in their illness and switch their definition as the character of their disease changes. I guarantee they have very similar conversations amongst themselves.

 

[svetoslav80]

"Progressive relapsing" for me, who are the other 3 ? :> If it's worth noting, I think my sharp drops in wellness were due to forcing myself too hard. So if I haven't forced myself, maybe I could fit in the "primary progressive" group better. One thing is sure, I've never experienced remission.

 

[AliceLily]

.

I voted the 1st one but it could be that I am the 2nd, 3rd or 4th.

My ME has been progressive through mild to severe and now I don't know what is really happening at this stage of disease. I feel a worsening in some ways.

Edit: Changed my vote to 'secondary progressive'.

I've changed my vote to 'secondary progressive' because my ME 'remitting' is really just a slight easing in symptoms due to resting.

 

[Little Bluestem]

After nearly recovering following the initial onset, mine has been a slow, steady worsening. If I had known then what I know now ...

 

[Mij]

After the initial onset I recovered 95% after 9 months of bed rest and taking care of myself. I was well enough to return to work that didn't require too much standing, the 'normal' activity caused a terrible relapse after working for only one month. I would say within 2 weeks of working my stamina and balance issues were building and I didn't understand what was happening at the time. My sleep was becoming more wired until it shut off completely. I could no longer stand upright and seriously couldn't put on foot in front of the other. I could not return to work and became disabled.

Now, if I wouldn't have jumped on my stair master for 40 minutes (I feel this was the "turning point") or continued to exercise (run) on days I was 'recovering' again, I think I may have had some chance of not being as disabled as I am today.

 

[JaimeS]

Yea, infections, infections, infections. Sometimes the whole family would catch some stomach bug, and I'd initially have the same symptoms, but then they would recover and my symptoms would just get increasingly severe.... and then the full CFS symptoms would kick in (raging headache, burning glands, feeling like a slab of concrete was laying on my ribs). Then it would just be a matter of waiting it out, nothing I did seemed to affect the course of the episode.

Just got through this... it's like first you fight the infection, and then you fight the complete immune depletion that is its result. By using meds that support the immune system -- or even excite it more than I could normally tolerate -- I went from complete relapse back to my usual self. I used Lactoferrin, Vit C, Enzyme Defense, colloidal silver -- stuff that excites the immune system and stuff that kills germs. All for what it's worth, as usual I can't be sure that what helped me will help anyone else, or that we are experiencing the same sort of response in the first place.

 

[JaimeS]

I'm really uncomfortable with having to vote for something that says remitting.

I don't feel like 'remitting' and 'remission' are the same term. To remit means to back off of something, not to recover. "A relapsing-remitting disorder means the symptoms are at times worse (relapse) and other times are improved or gone (remitting)." Improved OR gone, not cured.

 

[Woolie]

Just got through this... it's like first you fight the infection, and then you fight the complete immune depletion that is its result. .

I think a better fit for my pattern is a hyperactive immune system account. On encountering an infection, my immune reaction goes through the roof right from day 1 (I recently had it measured: after a vaccination challenge, I'm off the charts inflammation-wise within the first 48 hours).

I do not think at any time my symptoms fit the pattern of "immune depletion". Something like this might happen at about the 2-3 month mark, which is when all the symptoms start to ease off. The episodes are sort of self-limiting in that sense, and I expect that has something to do with the immune reaction exhausting itself. But in this case, immune depletion=relief.

I don't think I would want to excite my immune system. Ever.