PEM/Muscle Fatigue/Malaise

[klynn52]

Hi from new member,again

Confusion is often my close friend,because of the level of mental fatigue i get so please don't take anything i type here the wrong way.
Iv.e had cfs/me for a number of years,the first 17 or so years were mainly high levels of fatigue,like the malaise type,on most days.Rest or sleep did nothing to help with this.I also had a drugged up feeling,but wasn't on any medications to cause this feeling.

I didn't really feel the heavy/muscle kind of pain then,i felt more weak and lethargic much of the time.I also had high levels of mental fatigue.On occasion i would get calf pain/cramps that would make it difficult to bend my legs at the knee,such as to climb up or down stairs,and would mean walking was affected.

I was never bedridden,but other aspects of my illness meant i suffered with noise sensitivity,light sensitivity and being in the heat of a summers day,just leveled me.
I had bad mood swings and was often over emotional.After years and years ,my symptoms increased,making leaving my home not doable for most of the time and i less able to carry out normal activities,as much as i used to be able to do

Jump forward to 2009,the symptoms changed,a lot and have remained pretty much the same.

What i don't understand is the way i feel the fatigue,if you like.
The weak ,lethargic thing has turned to heaviness in my legs,muscle stiffness and pain.Balance is often affected,So when walking out doors,i get this muscle fatigue build up and i am still limited by how often i can do this. If i do it too much i feel faint,like i'm going to collapse.Other activities are also limited.I get mentally fatigued easily,which causes problems with concentration,memory,recall .I also get eye strain which causes problems with vision.I have problems with sleep on a major scale since the changes and insomnia at times.


So my question is.. finally...Is the muscle fatigue PEM or Malaise A mixture of both or non,i feel a bit mixed up and uncertain about the difference in how i'm feeling the symptoms now to how i felt them years before.
I think that's why i'm doubting the whole cfs/me diagnosis..now.
Thank you for reading this.

 

[Runner5]

So when walking out doors,i get this muscle fatigue build up and i am still limited by how often i can do this.

Do you have POTS ?

I don't really know much, it kinda sounds like a description of POTS to me instead of PEM but everyone is so individual and experiences different symptoms. Could be PEM.

I sound like a broken record but doing chair (sitting) based gentle yoga is a really good place to start. And yeah - no one (pretty much) ever feels like Yoga. I rather do anything else, like sit and do nothing, but it has given me my life back a little, at least helped with the pain, so I can't knock it. I just have to pester myself with notes all over, "DO YOUR YOGA!" (or I won't do it) -- also my husband pesters me, "do your yoga you will feel better."

Sure other people will have better info for you. ((Hugs)) Take care!

 

[klynn52]

Thanks runner5 for your input. But thinking through my brainfog PEM IS Mailaise-soo pretty stupid question from me to begin with.
I just wanted some clarification on symptoms iv'e had since a major relapse back in 2009,where it seems things changed for the worse.I went on to relapse through 2011 to 2014,which is a long time to have very unpleasant symptoms on a daily basis,affecting my fatigue levels,my walking ability and my balance.My sleep was also affected causing long stretches of insomnia,where i had no sleep at all ,then just really poor sleep.

I find it more and more frustrating because the GP's don't want to know.I dont have POTS,never really heard about it though.My balance issues happen when my leg muscles are affected by muscle fatigue.Heaviness in legs,problems lifting feet at worse and just painful,sore on better days.But i do have times when i dont get this,instead i get near normal,not often ,or weakness in the legs and a general feeling of feeling weak,unsteady.

 

[Wishful]

Your muscle aches and fatigue match what I consider part of my general symptoms. PEM makes them more severe. My muscle aches, which I believe are a problem in the perception of pain signals rather than actual pain signals from muscles, are most concentrated in my front thigh muscles. A severe flare-up will spread that to the rest of the body. However, my fatigue doesn't increase abnormally when I walk or do other physical activities. Yes to insomnia too.

LDN blocked the aches for me, though it seems less effective now. Acupuncture (tried once, using points on my feet) also blocked those thigh aches very effectively for a few days.

 

[klynn52]

Thank you wishful for your reply.I think the point you made about the muscle pain is interesting and my increase in it and the heaviness and stiffness when i increase my activity just points to it being PEM,it does get better after rest,which also proves the point.

I don't do well with medications like anti inflammatory drugs and the NSAID'S so i'm stuck with pain and discomfort.May be i should look in to pacing more something i'm just not good with.
cheers.

 

[Wishful]

Does it worsen 24 hrs after activity? That seems to be typical, though not absolute, for PEM. Also, I don't find that rest helps reduce PEM symptoms, time without additional triggers does.

Antiinflammatory's don't help my ME muscle aches either. I consider that as evidence that this isn't standard muscle pains.

Pacing doesn't really help me either. My trigger limit for leg activity is fairly high: I've hiked or biked for hours without triggering PEM, though going beyond that does trigger it (though that may be from using arms to hold handlebars or a walking stick). My trigger level for arm activity (for specific muscle groups and positions) is very low: a few minutes of sawing wood or washing windows will trigger severe PEM, so there's not much leeway for pacing.

It might help if you can figure out what your thresholds are for different muscles or activities. I know (mostly) what to avoid if I need to be PEM-free the next day.

What does work for me is avoiding activities that I know will trigger PEM, and taking cumin, which blocks it effectively for me.