What is the course of your ME/CFS?

[Justy]

Its always interested me how many of us fit the MS subtypes, and have wondered if this is the only extent of our subtyping, with most people actually having the same illness (as opposed to the multi illness theory).

 

[Jenny TipsforME]

I answered relapsing remitting, though for me a bit confused with having undiagnosed POTS for years and potentially another condition as well.

It hasn’t been a linear progression or improvement and neither worst (bedbound) or best (able to work full time hours) phases were at the beginning or now. This winter marks 20 years since my ME was triggered by glandular fever.

After my 2012 bedbound relapse I haven’t bounced back the same as previously.

 

[Mij]

I felt like this too and had the same experience with exercise. However, in remission, I find I'm able to do everything - whatever was happening to me had no permanent damage.... which leaves me very hopeful !!

Did you develop OI issues? I didn't have OI issues or PEM during those earlier years, but in the last 16 years this is what is keeping me 'disabled'. So I guess I should change/add that I did develop another health issue- OI.

 

[JaimeS]

If you are going to use this information in any kind of research or summary, I think it will only be useful if you clarify what you mean, and split the sample according to how long people have been ill.

I appreciate that. This is for curiosity's sake, not for a study.

 

[JaimeS]

Might be easier to focus on a specific time frame, which excludes the first year or two when the disease is establishing itself.

Might have been better to ask only people who've been sick more than 2 or 3 years.

I think there needs to be a fluctuating option as well as relapsing remission. I think many people's illness fluctuates but it doesn't mean they have any well periods, just different degrees of sickness.

Note that it says "better wellness" in the description. That does not mean well.

There isn't an option for staying the same either is there?

I had one person on TOF reply that they did not have a relapsing pattern nor were they getting worse. Their health state was always very similar, day to day, week to week, and month to month. Saying that in the comments is enough, thank you.

Something changed with the ARVs but not everything.

Relapsing-remitting, then.

 

[JaimeS]

Like a lot of people, I don't fit into any one category. I'm still in a phase of having worsened, which began in March 2016. I have lost a lot of my memories and abilities to function since then, but am fairly reassured that it's not dementia.

I now have times of day when I am pretty useless mentally, but even in this worsening I have had spells of feeling quite normal, which are sadly gone next day or later the same day.

I've had ME since 1995, and was bloody intelligent until March 2016.

Considering you have times you feel better and times you feel worse, I'd choose #1. If you feel your overall course has been that you're getting worse over time, I'd chose option #2.

 

[JaimeS]

I can't add them to the poll....

Thanks, Kafka, I'll add them by hand.

Perhaps you could add the option of + also a long term remission? There are a number of us long timers around who have had long (for years) remissions to near normal.

(For good reason) you can't change a poll once people have answered it.

 

[JaimeS]

To those who have discussed shifts in their condition, people with MS slide from one of these to the other as well. I'm also sure that many feel as though the category into which their doctor has placed them fits in many ways but doesn't fit in some, or at some times. We're invariably more complicated than the boxes created to sort us.

 

[fds]

Ok. After reading @JaimeS posts I understand that relapsing remitting in this case means varying rather than periods of wellness or remission s I have chosen option 2

 

[markiemark]

I'm definitely in the relapsing-remitting category. If I described my "best state of wellness" that I can achieve as my "ceiling", then my "ceiling" wellness is pretty poor, delicate and easy to bugger up next to a healthy person. The hole of worse wellness that my "ceiling" covers over is very deep and leads to scary places but I don't believe I've experienced my "ceiling" sliding further down into the hole every time I slowly climb back up to it. Nor have I experienced the hole being any less deep. Over the years I've got better at recognising what's my best health and my worse health. Perhaps it got better or worse in the time I wasn't as aware of it. Who knows! This is what it's been like for the last few years anyway .

Hopefully one day I can smash the ceiling and climb out of the hole entirely, ha ha.

edit: a better metaphor would of probably been trapped in a deep well with a cover over it haha. Being stuck against the cover isn't ideal but it's better than being at the bottom of the well! however, the cover and the floor of the well don't change for me (i.e. relapsing/remission)

 

[Keela Too]

[QUOTE="JaimeS, post: 16892, member: 135"

Relapsing-remitting, then.[/QUOTE]

Okay added that to the poll. Yet without treatment I would have been progressive, but maybe progressive is defined as even with treatment?

 

[Binkie4]

Have answered primary progressive but have been diagnosed with a heart issue needing surgery so this may be making a significant contribution.

EDIT: there could be a link between ME and the heart condition via RCCX theory but please don't ask me to explain that. Sharon Meglathery writes about them.

 

[TigerLilea]

Fluctuating. Seems to very slowly get worse over time but it's hard to distinguish that from consequences of a sedentary lifestyle and aging.

I was thinking about this after I voted last night and I wonder, too, how much my aging is a factor in how I feel these days. Menopause for me was definitely life changing so it's hard to say how much of my fatigue today is ME related and how much is just a normal part of aging.

 

[Kafka]

Did you develop OI issues? I didn't have OI issues or PEM during those earlier years, but in the last 16 years this is what is keeping me 'disabled'. So I guess I should change/add that I did develop another health issue- OI.

I never had OI issues - but my youngest daughter does.

The PEM, for me, was the very first symptom - the moment I realized that if I hiked a mountain ridge a second time in a day, I would be flat on my back for days... which is the moment I count as my ME/CFS start. My fitness was very high, and it took a lot even for me for the PEM to kick in, but when it did it was severe.

I did have a bad cycling accident with TBI one year before - and never felt 'the same' but I attributed that to the TBI and some PTSD.

 

[Daisybell]

I answered 1. I think I’m fairly stable overall, but I have days/weeks where I feel worse. I had one period of significant improvement when I went overseas on holiday - I gradually improved over 6 weeks to the point where I could walk for 40 minutes and could feel well. Then this slipped away again. I’ve not had any significant remissions to the point of being able to exercise and feel good.

Over the ten years I’ve been ill, I gradually lost ground for the first 5 years or so - whilst fairly consistently overdoing things! I’m currently able to work a few hours a week, but I always feel worse afterwards. I pace fairly carefully. I’ve never been bed-bound thankfully.

 

[Mij]

I was thinking about this after I voted last night and I wonder, too, how much my aging is a factor in how I feel these days. Menopause for me was definitely life changing so it's hard to say how much of my fatigue today is ME related and how much is just a normal part of aging.

It's the normal part of aging. My older sister started menopause one year before I did and she noticed a decrease in 'energy production" when she's out running (she's very athletic). I was almost happy to hear this because I've noticed less stamina too and was afraid it was M.E related.

 

[JaimeS]

progressive is defined as even with treatment?

I believe so. MS is treatable even if not curable.

 

[Trish]

[QUOTE="JaimeS, post: 16892, member: 135"

Relapsing-remitting, then.

Yet without treatment I would have been progressive, but maybe progressive is defined as even with treatment?[/QUOTE]

@Keela Too I don't want to derail this thread by asking about your treatment, but can I ask if you've written about it anywhere, here or on your blog?

 

[Keela Too]

@Keela Too I don't want to derail this thread by asking about your treatment, but can I ask if you've written about it anywhere, here or on your blog?

I do need to do a blog post really. I took ARVs
I have a post somewhere on PR about it all. Okay here it is. http://forums.phoenixrising.me/inde...0-yrs-tenofovir-poll.54912/page-2#post-920200
I'll put my story in a blog in a week or so. (Daughter getting married here in a couple of weeks)
If anyone wants to ask more perhaps for now just PM me. xx

 

[Justy]

MS is treatable even if not curable.

There are some treatments available for some PWMS, but a lot of people dont respond to treatment or arent candidates for it. I know a very severely ill woman with MS who has not responded to any treatment and has a primary progressive course.