Does everyone who has ME/CFS have Fatigue ?

[PNR2008]

@jann1033, I just went to the syncopy clinic at the Cle Clinic because my POTS has become so bad. Did you ever do the Levine Protocol? Have you heard anything about it? Thanks

 

[soxfan]

@jann- I would think since I don't fall asleep that I shouldn't feel so awful when I get up. I am just really resting in a dark room with my eyes closed. Sometimes I feel very wired inside so it really isn't all that restful but am so very tired.

If I don't rest I will never be able to get through making or eating dinner. I just don't have a choice. I usually don't have problems sleeping since I don't sleep during the day at all unless I have overdone and am really wired...

I think I will try sitting in a recliner to rest and see if that helps.

 

[jann1033]

@jann1033, I just went to the syncopy clinic at the Cle Clinic because my POTS has become so bad. Did you ever do the Levine Protocol? Have you heard anything about it? Thanks

I was intending to go to his clinic ( Michigan is only a few hr's from me) but he's not covered by my insurance so can't do it now. My step sister in law ( was told she had CFS although imo she didn't fit any definition if it having only been sick a couple weeks when dxed) went to him but didn't feel she benefited ( but did she have CFS to Start with?)
I'll look up their syn copy clinic then after I go to the primary care dr, endocrinologist, sleep Dr. and can drive again after the knee replacement I'll see if I can get an appointment Lol. Ccf is so specialist happy I think part of the pem is brought on by going to so many drs. for basically the same stinkin problem

 

[surethom]

I think I have a mild form of fatigue! I am no were as bad as out on here.

I get slight brain fog & start to feel tired in the afternoon but feel a bit better when get home from work. I haven't been bad enough that I have to go to bed before 10pm well not since last September. It's for feeling hot then cold & shivering but internal temp is always normal!

 

[Tired of being sick]

I would like to know who voted no.....

So I can pick your brain a little.......

 

[surethom]

If you have no fatigue could you have "post viral syndrome" instead m.e. /cfs?

 

[Allyson]

I agree that the terms are difficult.

if you read medical dictionary definitions, there are a variety of definitions for "fatigue", some of which include "asthenia" or muscle weakness, which would presumably include fatiguability.

The word is just so broad it covers every experience from the "cosy kitten" feeling healthy people describe (in Jason's paper which was mentioned above), to the ill/weak feeling people have when they have influenza, pneumonia, and liver failure, to various neurological weaknesses. And whatever is going on (I guess immune), which is also described as "fatigue", but is significant to very severe, in diseases such as Lupus and cancer.

Also what is meant by both CFS and ME varies a lot.

yes t is a vast word and needs to be defined IMO - but yes I get it all the time in one form or another

Aly

 

[Allyson]

I would like to know who voted no.....

So I can pick your brain a little.......

the million dollar question!

 

[Gingergrrl]

I have severe fatigue/PEM from doing the slightest exertion (physical or mental) and at the moment this is pretty constant. If I am laying flat, resting, in a very quiet room, I can feel okay. But the second I stand up and do literally any kind of exertion, I have fatigue. I was not always this bad and I am hoping this will improve in the future.

 

[Tired of being sick]

I have severe fatigue/PEM from doing the slightest exertion (physical or mental) and at the moment this is pretty constant. If I am laying flat, resting, in a very quiet room, I can feel okay. But the second I stand up and do literally any kind of exertion, I have fatigue. I was not always this bad and I am hoping this will improve in the future.

This is most likely the OI part of CFS/ME

Do you record your blood pressure/pulse at home?

My blood pressure/pulse is superb only while laying down

Hence this is the is the biggest reason I spend 90% of my time lying down

The volatile fluctuation of heart rate is what puts me in bed,not the BP

When my heart rate shoots up 70bpm as if I were in a marathon only to
realize I'm just taking a damn SHOWER!

Have you ever noticed late at night while relaxing in bed that your mind is at it's clearest?

 

[Misfit Toy]

In the beginning of the illness, fatigue was an issue but not the biggest. My brain was hit and I felt "off" and wired, anxious, tired or just all over. I had fever blisters, swollen glands. Then it hit hormones. I had high cortisol. Then years later-low cortisol, yeast, you name it. Fibro hit.

But fatigue, like drop dead fatigue hit later on. Now, I drive to the mailbox, barely walk around the block, etc. fatigue is not a good enough word anymore. Exhaustion. A sickening exhaustion that leaves me unable to talk, express, feel, do....it is awful.

It's like being in a quicksand. And sometimes I am knee deep in it and other times I am up to my neck in it...gasping for air and help.

 

[Gingergrrl]

This is most likely the OI part of CFS/ME

Do you record your blood pressure/pulse at home?

My blood pressure/pulse is superb only while laying down

Hence this is the is the biggest reason I spend 90% of my time lying down

The volatile fluctuation of heart rate is what puts me in bed,not the BP

When my heart rate shoots up 70bpm as if I were in a marathon only to
realize I'm just taking a damn SHOWER!

Have you ever noticed late at night while relaxing in bed that your mind is at it's clearest?

@Tired of being sick I have a special watch that measures my HR and I pretty much never take it off. My HR would jump so high in the shower like you said that my husband bought me a shower chair. Now even the chair is too difficult so I just take baths. And yes, my HR and mind are both the best and clearest at night. I am convinced now there is a major dysautonomia/POTS component b/c the Atenolol is the only thing that helps me. I am also taking a very small amount of Florinef (not sure if it is helping) as well as electrolytes and drinking water.