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

Ysabelle-S

Ysabelle-S

Senior Member (Voting Rights)
In the course of chat on another thread, I remembered that I used to get pins and needles a lot after I fell ill. It ran for years, before disappearing. I'd say I almost never get pins and needles now. It's been decades since it was an ME symptom for me.

I also used to find my skin was painful to touch, though that symptom wasn't there in the beginning, and I haven't had it in decades either.
 
My skin used to be hypersensitive to touch, and to a certain extent to other things, any touch, even clothing. It never gets "that" bad now but a pretty good indication, easily spotted, is when my cat curls up next to my feet, if it bothers me at all it's time for meds. As per "normal" I hate people touching me, in any way, but a direct hold is much less unpleasant than other forms of touching - but I suspect that at least part of that is an aspie thing.

Sorry but unless my memory is prodded then I'm unlikely to remember much about symptoms, possibly coz one of my "symptoms" is.....lol
 
I had those weird little skin/ vein / I don’t know what sort of twitches- where you can see and feel something twitch under your skin. Hope I’m describing it right; I think I sound like I’ve been watching too much Alien.

I forgot I’d have those constantly in the first year or so and I never get them now. I only remembered because my daughter forced me to take her to the doctors when she was getting a thecsame twitching (I didn’t tell her about mine).

I had a high resting pulse rate (around 90/100 plus) too. That’s fine now.

I am sure there were lots more and I’m intrigued to hear others’ experiences.
 
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Horrendous kidney pain for 3 months at ME onset. Then all the other symptoms took over, kidneys took a back seat. Of course I went to my GP and a kidney specialist and got the all clear, but I was double up on the sofa unable to move.
 
In the beginning I used to struggle with almost involuntarily falling asleep. This was when I wasn't entirely sure what was going on with me and I thought i was just tired out from having a bad illness. It was only when it continued that I knew something might be off! It eventually settled into a monotonous fatigue (among other things) and I now usually have trouble going to sleep more than anything else!
 
It is funny, when I saw the title I was thinking no, but now that I have read the other responses I am starting to remember similar experiences.

In the first few weeks I slept a lot and would fall asleep very easily (e.g. on the bus, for a short journey, and even standing up once!). But that didn't last long and for most of my illness I have difficulty getting to sleep and/or staying asleep.

I also used to feel very sensitive to the touch in the early days, which I wouldn't get so much now. I had some pins and needles also (though not much) which I don't get now.

I used to have a lot of bruises in the early few months. I am not sure if this is because I was clumsy and walking into things more, or if there was some issue making me bruise more easily, or possibly a mixture of both. I don't seem to get this so much now, but I am not sure if some of it is due to me possibly not walking into things as much (though I am still clumsy) or has something biologically changed.

I haven't got much nausea the last few years, now that I think about it.

I had more shooting and burning pain in the early days, though some of that was before I was diagnosed and learned to pace myself.

My bladder problems are as bad as ever though :banghead::banghead::banghead: I really thought of all symptoms that one would calm down, I'd even swap it for one of the other ones back ;) , but no it is determined to annoy me for the rest of my days. I use medication for it sometimes but it only takes the edge off.
 
I had terrible nausea and vomiting at the start (but can't be sure it was not due to drinking too much alcohol or eating badly or taking medications).

I also started having great difficulty climbing the stairs, often ending up on my hands and knees, but maybe this was due to lack of pacing.

Both of these are very rare now.
 
I had a few years of losing limbs, it still happens but is rare these days.

It either felt like a foot had been nailed to the ground, so it wouldn't move when told to, resulting in a fall as I couldn't compensate fast enough, particularly entertaining on stairs, or like the limb simply wasn't there, I'd go to take a step and collapse coz me leg had phased out, or I'd be holding something and it would just end up in little pieces on the ground coz my hand/arm had phased out - that's still fairly common, comes in waves but probably averages a couple of times a month.

These is/was no warning, on the phasing out part anyway, it's as if my brain's map of my body just temporarily loses a bit.
 
Loads of stuff I never get now, some were a bit weird:
  • horrendous calf pain that would stop me from sleeping
  • oversleeping (when the calf pain wore off) and napping during the day.
  • rapid muscle fatigue
  • ridiculously bad post nasal drip (who knew a person could produce so much mucous?)
  • feeling faint/dizzy climbing stairs
  • insanely itchy ankles
  • sheet drenching night sweats
  • amazing 'sensation' dreams like being on a rollercoaster in a giant kaleidoscope
  • nausea after eating
  • always either freezing* or too hot, never comfortable
  • reading a sentence over and over and over again
  • unremitting, body wide aching muscles that lasted for months (I do still get something similar but only with PEM)
  • Reynaud's

* I still get the too hot thing but mercifully not the freezing. That's another thing that is now only PEM related. For those who have that bone numbing cold, but aren't bed bound, I would recommend a heated throw. I bought one recently for my elderly mother. It's a pity they weren't around 30 years ago. It beats piling all your coats and sweaters on the bed and diving under.
 
The neurological sensations I experienced in the first few years were quite bizarre. I had difficulty navigating/coordinating my legs and felt they would take me in a different direction :nailbiting: While walking or sitting in a chair I felt as though someone was pushing me forward or sideways.

Sickness/knife stuck in my gut sensation, made worse when walking.

Walking in quick sand with heavy legs.

Constant rocking from side to side sensation in my head. Lying down made it stop.

Heart racing when standing, my M.E doctor assured me this was viral. I don't have POTS.

During the earlier onset of M.E (8 years) I didn't experienced PEM or cognitive issues, the autonomic/PEM/cognitive drainage developed years later.
 
MeSci said:
I had terrible nausea and vomiting at the start (but can't be sure it was not due to drinking too much alcohol or eating badly or taking medications).

I also started having great difficulty climbing the stairs, often ending up on my hands and knees, but maybe this was due to lack of pacing.

Both of these are very rare now.
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It's awful isn't it, I had quite a spell of having to go up stairs on my hands and knees. I can remember being in tears sometimes just from the exhaustion and effort of it.

I also remember the feeling of my head being squeezed, like having a clamp around it getting tighter and tighter. Horrendously painful.
 
Amongst all the other things, I used to get mild, but nagging pains level with bottom rib on both left and right sides. I was told this was liver and spleen involved in immune response. The liver pain has gone but the spleen one is still constantly there.
 
Jan said:
I also remember the feeling of my head being squeezed, like having a clamp around it getting tighter and tighter. Horrendously painful.
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You've reminded me that I had this too. It wasn't painful but more of a tightness/clamp sensation.

Do you feel this is an autonomic issue in your case?
 
Yes, here are some things that have pretty much gone away:
  • Bed soaking night sweats These were a dramatic feature of my early illness--something I'd never experienced previously--and if I was with it enough to act on my needs, something that necessitated layers of toweling be placed under me if I hoped to avoid soaking the mattress.
  • Swollen and painful glands/lymph nodes Particularly directly under my chin and to the side of my neck. These seemed to radiate a strange type of pain that collaborated with how ill I was feeling).
  • Light sensitivity/photophobia While not extreme, I'd grown up in sunny Southern California and was unused to having bright light being bothersome).
  • Extreme chemical sensitivities Exposure to some chemicals is still risky for me, but in the beginning it was extreme. A whiff of cigarette smoke or something like acetone or pesticides could cause a multi-day crash on top of a very poor baseline.
Bill
 
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