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

I'm not sure, I was having a lot of neuro symptoms at the time following the Tetanus/Polio vaccine the GP insisted on when I moved there. Autonomic issues are always present too, so it all gets a little confusing.

 

@Jan these symptoms followed tetanus/rubella/hep B vaccines for me too.

 

Wow, I've heard so many times of people developing horrible symptoms after vaccines. I'll never have another one for anything, I'd rather take my chances with the 'flu or whatever.

 

The main one that's changed for me is that I used to get a burst of energy and feel quite well whenever I got a cold. That hasn't happened for several years. Now if I get a cold it's the typical cold symptoms on top of my usual

 

I've been sick since 1990. My symptoms have definitely changed over time.

I think the biggest change is that in the beginning I wanted to sleep a lot more. It's not like I fell asleep in the middle of talking to someone (not narcolepsy) or anything like that. It's just that I slept more hours per night. And I also slept in the afternoon a lot of the time which did not reduce my wanting to sleep at night. I did not have insomnia, I had hypersomnia.

But it's hard to be completely sure which other symptoms have diminished due to time vs. medical treatment vs. learning how to adjust what I do and pace myself (and then finally going on long term disability).

For example, I know that treatment of the dysautonomia (NMH & POTS) has reduced many of my symptoms.

But some of my symptoms, like the muscle twitching (fasciculations) might be reduced because I simply don't push myself the way I did during those early years. For example, on both of my tilt table tests (1995 and 2003) the muscle twitching right before I fainted was pretty intense.

Muscle twitching also comes back when I overuse a particular set of muscles. For example, when I forget and try to hold something for a long time, e.g., I use the blow dryer to dry my hair and forget to put it down about every minute. Any muscle use that is sustained, not just a quick motion, seems to be bad for me.

It's weird because it's not weakness. I can carry a grocery bag from the car into the house as long as it's a good day. But I've learned not to hold my phone in my hand because that will cause twitching, and maybe some aching, later on. So I have a headset.

I hope this is helpful and not too rambling.

 

My doctor told me those were called fasciculations.

 

The first several weeks, I felt like my head was stuffed with cotton batting. I got five assignments behind in the class I was taking at the time.

That take a step and collapse thing has happened to me twice, years apart. Because there was no warning, I didn't have any sense of exactly what caused it.

For bed, whether your bed-bound or not, I highly recommend a heated mattress pad.

 

Sore throat, sweats, coughing

 

The horrible pain kept me from sleeping or chewing. I still have to get Botox injections, and other interventions, to keep the pain away.

 

I can relate. I used to rock to one side to avoid dragging one foot behind me when walking. I looked like I had a stroke. It was as you mentioned “quite bizarre”. I also used to drop objects daily, and I was always loosing my balance. Walking down/up stairs were challenging for different reasons.

 

For me some symptoms have subsided and made way for new ones.

Pain is my biggest one...intense joint and muscle pain in hips and knees and crushing headaches
This is now more of a dull pain and doesn't affect my ability to walk etc. I occasional get knitting needle through the eye type headaches and the sideways vice ones, but these are much less frequent now.

The other main one is skin infections and bruising. I still have slow wound healing but don't have the amount of infections and lesions on my skin. I also had a spell of bruised finger tips that would spontaneously appear and disappear...these have gone now.

I also used to have the falling asleep,in the afternoon which has now made way for more periods of insomnia

New symptoms are mainly that cognitive stamina is much lower and OI symptom seem to have got worse, but perhaps I focus on these more now that the pain is so much less?

 

I had a terrible headache from the onset. Tried a lot of different remedies and nothing helped. After about two years it disappeared by itself. I am still relieved 20 years after.

 

Me too - this is the most significant symptom I remember that I don't have now - a terrible constant headache. I also had horrible pain in my neck and upper back. Other things were nausea, which I don't often have now, also the muscle at the base of my thumb used to spasm for 'no good reason', until I began to associate it with overdoing it - time to go and rest - which was actually useful.

 

I am another pwme possibly triggered by tetanus vaccination & used to get the twitching. I had a definite pattern of pain & twitching that started in lower legs & moved upwards. Later pattern of twitching more in muscles I have over used& more when I have done too much.

 

Although all my symptoms vary over time I don't think I have fully lost any symptoms.

I do seem to get tooth abscesses in periods of more marked relapse, though I have not had one (fingers crossed) for several years. The first abscess I have had was very painful and occurred within a week of the onset of my glandular fever that triggered my ME. However this association is confused by pain in my jaw when my ME is more marked, that mimics the pain of an abscess but does not seem to be associated with any infection.

Otherwise my experience has been the reverse, rather, very approximately on an annual basis, new symptoms. One year bladder/prostrate issues, the next chostrochondritis and so on. These new symptoms have in general not been associated with any new identifiable medical condition. This year an acute neurological episode with left sided weakness and failure to recognise my left side as belonging to me, it only lasted an hour or so and could have been a TIA or a very idiosyncratic migraine or an more bizarre ME symptom. This one has not been investigated further as by the time my GP visited a day later the symptoms had completely resolved and I was because of the ME not well enough to travel to an outpatient appointment.

 

Similar to other reports, my early symptoms were dominated with:

- Very frequent & severe migraine with cyclic vomiting
- Calf ache, worse at night and improving with sleep, even just short naps
- Unrestorative sleep
- Sore throats & swollen/red lymph nodes, predominantly armpits
- Night sweats

Time and pacing seem to have greatly attenuated all of these. I suspect prolonged EBV may have been a major contributing factor in most of them. The migraine was likely puberty related as I have a very strong family history of this.

Night sweats have been gone for years, the feeling of unrestorative sleep is largely gone also - on bad days now I wake up largely OK but run out of energy much sooner than normal. Before I would've woken up feeling more fatigued than when I went to bed.

 

Oh I forgot about night sweats...yes that was particularly disgusting. Don't have those anymore (went after the first year), but still have the unrestorative sleep unfortunately. Never had swollen lymph nodes. I wonder whether there is a subset diagnostic there?

 

Symptoms? I have symptoms?

 

My sore throat went away for many years then came back to stay. Headaches mostly went away. Muscle pain improved after decades. Swollen lymph nodes went away for the most part, though tender lymph nodes do happen from time to time. Lots of new symptoms too, but that is not what this thread is about.

 

It's interesting how many of these early symptoms we have in common!

I used to, but don't now, have

• Soaking night sweat - had to start wearing fully covering pyjamas in cotton so I could change them not the bed. Still had to sleep on a towel most nights
• Sudden loss of all muscle power - basically collapsing where I stood out of the blue, no pain but like all my muscles got turned to jelly
• Hypersensitive skin - ah, the lovely hurt looks on peoples faces as I recoiled from their touch! Comes back sometimes when I'm about to crash
• Light and sound sensitivity - though I think that's mostly because I seldom crash these days and PEM doesn't get as bad
• Being unable to read even a single sentence without focusing so hard my head exploded
• Loss of limbs

What I always thought was pretty funny was to loose only the middle part of a limb, say only my thigh, and being left with a calf that is not connected to my body but floating on its own some distance away. Surreal.