Are there symptoms you had in the early stages of ME that you no longer get?

Yes, I also had soaking night sweats, which I very rarely get now. Also extreme unexpected weakness, I think. I recall this at my current house, which I moved to after my suicide attempt about 2 years after the illness started, so I can't be sure it wasn't due to that.

My early symptoms are listed here: http://forums.phoenixrising.me/inde...-and-results-of-1995-step-exercise-test.1650/ but I still have some of them. I don't have the energy to read it at the moment.

The 2nd year is detailed here, including the suicide attempt (WARNING): http://forums.phoenixrising.me/index.php?entries/health-notes-including-suicide-attempt-1995-6.2099/

It's a pretty long read, and I can't be sure what is due to ME and what is due to the overdose/results of treatment for it.

 

I used to get sudden weakness a lot, where my legs would become hard to control for example, but even now I get this occasionally. It became much less common but never really went away.

 

I find it hard to be sure whether the lower frequency is due to better planning or anticipation.

 

very high temperatures with sweating / delirious - first 15 years or so.

 

I forgot all about the night sweats! They were a lot more common in those first 5-6 years.

Night sweats were kind of unpredictable but seemed to come with most crashes. I would wake up with my t-shirt soaked through, mostly in the neck and chest area, not the underarms. I'd have to get up to change my t-shirt and pillowcase and then adjust the top sheet because that also had a wet spot where I'd soaked it with sweat.

My night sweats have not completely gone away but they are much rarer now. I can't remember when I had this happen last. But I'm pretty sure I've posted about it on the PR forums sometime during the last few years.

 

Yeah, night sweats were something that I only experienced in the first 2 or 3 months after onset. I also had no appetite, which led to a loss of about 1/8 of my body weight in a couple of months before it stabilized. I also went through a period of really bad migraine headaches in the first year - something I'd never had before. Fortunately, they never returned.

ETA: Maybe a month into illness, I briefly had a rash of scattered, flat, pinkish spots on my neck, torso, abdomen and arms. It lasted only a day or so, but I'd never had a rash like this as an adult (or even after age six). The closest match I could find for the rash was a viral illness that very young children get called roseola (Sixth disease). It's quite rare in adults, but it can happen in those not exposed as children. It's caused by HHV-6 (which some have associated with ME/CFS) and less frequently with HHV-7. Since it was so transient and unaccompanied by fever, I kind of wonder if this was an old virus briefly re-emerging as some other herpes viruses do. I never saw the rash again.

 

I'm at my first year now.
When I try to list my symptoms I always forget the most important one(s) and go on and on about any minor niggles. Sometimes, (ETA: especially on 'good' days,) I feel like I must be a hypochondriac. Surely, if you can't pin down your major symptoms?!?
(edit: deleted excess - there's no doubt that I'm not a hypochondriac on bad days but I'm doing well in pacing. Maybe the list of symptoms that people have in the first years but not so much later are the ones most amenable to rigorous, long term pacing?)

I find this list of symptoms describes my experience of ME/CFS better than most, except that PEM is the most obvious, clear, consistent "symptom" (phenomenon really). [was going to multiquote to highlight the specific ones that really hit the nail on the head but will rest instead - I've liked them anyway]
So, if it all goes away this coming year, what am I left with? Currently feeling hopeful, even optimistic. Maybe don't tell me, maybe I don't want to know...?

(Removed off-topic bit)

 

I’ve « only » been sick for a little over 3 years and I still have all my initial symptoms except hypoglycemia. This one was really scary so I’m glad it’s gone.

 

Something I seemed to develop a few months before post-infectious onset was body-wide, uncontrolled shivering when I hopped into a cold car at night. I'm talking about massive waves of shivering, not the kind of thing one might usually expect in moderately cold weather. I remember wondering what the heck was going on.

A few weeks after onset, I experienced this kind of shivering inside a warm house. It was so severe that I was taken to the ER, but the episode had ended by then and and no cause could be found.

I personally have never experienced this again, but I did subsequently see it twice in others.

Once was in a late 1980's PBS documentary on treating cancer with interferon. This kind of massive shivering is a side effect that is known to occur with that drug sometimes.

The other time was when I saw my mother go through this while she was on chemotherapy for cancer (not with interferon). Her shivering episode happened at home, and I watched her go through exactly what I had experienced years earlier. Her temperature went up during the shivering, but then returned to normal.

How my uncontrolled shivering episodes were related to ME, I can't say, but the fact that they began a few months prior to post-infectious onset makes me think that the many infectious "triggers" of ME may just be the last straws for a system already out of balance in some way.

 

I experienced severe shivering two or three times since getting ME. I had to go to bed at least once, on one occasion when it was warm weather. I was fully dressed but had to add more clothes and bedclothes and have a hot-water bottle, I believe.

Have just looked up two occasions on PR and found that they followed excessive alcohol on my birthday!

 

https://twitter.com/user/status/952012046014603268


Maybe someone would like to link this thread to him, or perhaps start a new one based on his question?

Edit to add: I can't remember any twitches or spasms from the first years, but it started about 15 years in. Often it is tugs in the left arm, but it can be in both legs at the same time as well. During periods when I'm better, these symptoms are better too.

 

Some symptoms from early on that I no longer experience:

• severe insomnia (sleeping 4-5 hours a night)
• recurring upper respiratory and inner ear infections
• heart arrhythmia
• weight loss
• speech difficulties
• tender/swollen lymph nodes

Some early symptoms I don't currently experience but have experienced episodically:

• stumbling
• partial paralysis
• facial flushing
• severe anxiety
  
• double vision
• tinnitus

 

I still get some of these at times:

• severe insomnia (sleeping 4-5 hours a night)
• blocked (inner?) ear, causing deafness
• speech difficulties (in the last 2 years)
• swollen lymph nodes
• tinnitus

 

Darn. I recall tutoring a computer science group when I realised I was almost deaf. I had forgotten about that. This used to happen regularly in the early 90s. Then it went away.

 

There's a moment in "Unrest" when Jessica Taylor's father places her back in bed after she briefly touches her feet to the floor for the first time in years.

At first, I couldn't understand why the bed was shaking so much as she was laid back, but then it struck me that she was likely "shivering" in the fashion that I described above. I think this was the first time I've seen that shown in an ME patient on film.

This kind of shivering is called "rigors."

I can't say that her "shivering" and mine have/had the same exact underlying cause, but it just leaves me kind of slack-jawed to see things that seemed so unique and inexplicable to me 35 years still happening to others today. It's not the first time I've had an "Oh, my God" moment like this regarding ME, but it's always stunning and heartbreaking.

 

That's interesting, I get that sometimes. When I saw that scene I wondered if it was possibly myoclonal spasms, which I get as badly as that on rare occasions, or a seizure. Now I'm not sure at all what was happening.
It's good that they showed it in the film

 

Incidentally, my lymph nodes (at the front of my neck) seem to have been permanently swollen for years now. Anyone else have this?

 

Severe nausea, permanent pain in left side, chest pain, racing heart in beginning - I think those symptoms may have been down to Coxsackie b4 - later determined to have triggered my ME. I also had a very obvious initial viral GI phase. And when I went outside the light hurt my eyes (I was studying in France at the time, missing all my classes).

The bad, bad neuro stuff - actual ME - evolved monstrously, months later, and, of course, persists today. Nausea is much better, thankfully, though still happens. Also had severe insomnia in earlier years, still get but def not as bad.

PEM, orthostatic intolerance (worse in last 2 years) and myalgia and brainfog are symptoms I pretty much *always* have now.

Developing idiopathic bilateral uveitis (uncommon) in 2009, a year after my novel came out, a very stressful time, also points to bizarre immune activation.

 

I just recently discovered the term 'rigors' to explain my experience of this periodic symptom, usually set off by exposure to cold.

Although it had a new disturbing twist a few days ago when I had rigors for about 5 minutes (not triggered by cold, so don't know what's up with that) and it was difficult to breathe because all my muscles were contracting and I was shaking uncontrollably - but this was abated by sudden onset vomiting.

As I'm laying on the bathroom floor recovering from that, rigors returned again for a few minutes followed by (tmi) diarrhea. Thankfully that was the end of that intensity, but I've been quite nauseous since.

My sophomoric theory is that the message that was telling my muscles to contract, also messaged my GI tract to contract, causing the double ended expulsion / explosion.

I wonder what is happening to the heart during rigors? Probably not good things.