Does everyone who has ME/CFS have Fatigue ?

[Valentijn]

Fatigue is a very sloppy description of the symptoms we get. It's highly inaccurate and imprecise as a term to describe our symptoms.

I get PEM, and OI. These are very disabling, not "fatiguing".

 

[Mij]

When I have fatigue it's from a viral intrusion, menopause or low ferritin. My CNS goes on over drive with ME and once I stop, get horizontal, put my ear plugs in, cover my eyes, stop talking and listening then I'm calm again and back to base. This does not feel like fatigue to me.

 

[soxfan]

When I get up in the morning I am never refreshed. Within an hour or two I start feeling fatigued whether I have done anything or not. It is an 24 hour feeling for me which never goes away. I feel some sort of fatigue everyday. Some days I can simply do nothing at all and others I am able to some things.

I use to get severe mental fatigue when I worked...socialize...shop...etc. Which then turns into physical fatigue as well where I have to lay in a dark...quiet room.

I have had 3 sleep studies done and I do not have sleep apnea. I know my sleep is very disturbed as I wake every two hours. I still feel a lot of my fatigue has to do with the quality sleep I have.

It doesn't matter what I do or don't do...I feel fatigued all day long.

 

[xchocoholic]

Being upright makes me fatigued. Resting long enough to completely reverse my hypoperfusion relieves my fatigue.
This typically takes me an hour.

They really need to differentiate those with OI from those with cfs.

Tc .. x

 

[jann1033]

To throw another monkey wrench in the mix. Just reading an interview with Judy Mikoviz who feels without a doubt it should be non HIV aids....now that might get attention lol
@SOC , that is basically how I was before this last flare. As long as i wasnt standing for a long time(well 5 mins or so), or overexerting i was ok compared to how i had been. My improvement had to be due to pacing since that's all I did that i continued since it was all that worked. (Although I firmly believe it was helped along by cortisone shots since I couldn't get them this time due to upcoming surgery and this flare while better is still there, fatigue, balance etc.( I refuse to call it a relapse yet))

 

[Mij]

To throw another monkey wrench in the mix. Just reading an interview with Judy Mikoviz who feels without a doubt it should be non HIV aids....now that might get attention lol

Did she give an explanation as to how she came to this conclusion?

 

[PNR2008]

@jann1033,@Mij This may interest you. When I applied for disability in 1989 the government had no code number for CFS so they gave it the name "virus non-AIDS. Interesting for that long ago.

 

[Mij]

@PNR2008 there is a condition called non AIDS disease if your CD4 count drops below 350 but it's not related to a virus. My CD4 counts last time I was tested was 590 or something close to that. I've never heard of virus non AIDS. At least you were taken seriously though

 

[TigerLilea]

To throw another monkey wrench in the mix. Just reading an interview with Judy Mikoviz who feels without a doubt it should be non HIV aids....

She's the same person who thought we had XMRV so I don't take anything she says seriously.

 

[PNR2008]

My fatigue is all encompassing. I am bedridden until about 4-7pm, yes I can get up for necessary tasks but I am right back. I feel the safest and comforted in my bed. Then if I can I'll do some necessary tasks, let the dog out, feed myself, cat and the dog, water hanging plants then lay down on my porch swing or settee maybe read, talk to the neighbors, clean-up the yard then lay on the patio bench.

I hate to go shopping for anything and usually go in an out of the store for specific things, shopping for fun is a thing of the past. The items get put away and it's back to reclining. My brain and body are fatigued after anything. Sometimes when lucky I have a neighbor get some food items and even bring me a taste of their dinner if they made enough. I usually eat in bed or in nice weather outside on the patio.

Usually at about 8pm I can take the dog for a walk or bike ride or do housework. I try to do a little every day as far as exercise and house cleaning. I have ME/FM/POTS. Unfortunately I did fall on the bike yesterday, I do it twice a year and it only happens when I have to stop, then start again. Somehow I get the front wheel turned too much and my strength is running low and my dog doesn't pull until we are going so it's like a slow motion thing. Klunk I'm down but only bruised or scraped and I never have hit my head. I don't know if it's a fatigue or POTS thing but it happens. I love the bike riding and won't give it up.

Then its making something to eat and watch TV or whatever strength I have to make my place good for me. I then read or work on the PC and fall asleep which has been good lately but I have experienced the sleep horrors we all have. It sounds good but it really isn't. I feel weaker every year and the pain is worse. I many times hate my life but I try to do the best for me.

 

[Mij]

Dr. Judy MIkovitz says this in her interview:

Do you still believe a retrovirus causes ME/CFS?

"We never said cause. It was the adversaries that said cause. What we said was that there was an association. Everyone wanted to make this virus like HIV, but it's not like HIV. It's not crippling the immune system so badly that people are dying quickly. And it's not a large visible cell component that is being crippled, like the CD4 T cell."

From what I've read is that the CD4 count is what gives you a diagnosis of non HIV Aids. dunno, maybe I"m confused.

 

[Seven7]

Is what I understand also, I understand it like CD3 (Sojerns) CD4 +Tcell (HIV or non HIV), CD56 (CFS), CD57 (Lyme????)....

 

[xchocoholic]

Fatigue is a very sloppy description of the symptoms we get. It's highly inaccurate and imprecise as a term to describe our symptoms.

I get PEM, and OI. These are very disabling, not "fatiguing".

Good point. I can't think of another term for the way I feel tho.

Hypoperfusion is responsible for what's happening because it feels like every organ in my upper body slowly clenches up right after I stand up. My breathing becomes shallow, shoulders move forward, brain shuts down ...

All this begins to reverse itself immediately after I lay down. At first laying down feels horrible but then as blood gets distributed I feel better. I have to sit up all the way or partially to avoid overwhelming my heart and brain with blood when I first go from standing.

Fun fun .. tc . X

 

[SOC]

When I get up in the morning I am never refreshed. Within an hour or two I start feeling fatigued whether I have done anything or not. It is an 24 hour feeling for me which never goes away. I feel some sort of fatigue everyday. Some days I can simply do nothing at all and others I am able to some things.

I use to get severe mental fatigue when I worked...socialize...shop...etc. Which then turns into physical fatigue as well where I have to lay in a dark...quiet room.

I have had 3 sleep studies done and I do not have sleep apnea. I know my sleep is very disturbed as I wake every two hours. I still feel a lot of my fatigue has to do with the quality sleep I have.

It doesn't matter what I do or don't do...I feel fatigued all day long.

What you are describing sounds like what I had before I got decent treatment for OI. We get dehydrated which gets worse overnight since we're not drinking water while we're asleep (I hope ). PWME often have low blood volume which results in poor blood flow to the heart and brain, and consequently fatigue.

Have you had a decent evaluation for OI by a physician who understands the low blood volume common in ME? Do you take a morning BP measurement? What is your pulse pressure? It is often low in people with low blood volume.

 

[jann1033]

She's the same person who thought we had XMRV so I don't take anything she says seriously.

Actually that is part of the article. She talks about that. It was on pro heath but I couldn't link to it. Basically the NIH destroyed all their data, ALL of it , then smeared their reputation although only part was supposed to be retracted. I think ignoring anyone with decades of experience in her field, many published papers and an interest in CFS and then just assuming all their work is tainted.is shortsighted. It certainly wouldn't be the first time the NIH has been caught doing questionable things in the area of CFS. You have to wonder why? If its due to something they sanctioned or even caused, their actions would make some sense.
She feels its an acquired Imummodeficiency so non HIV Aids is a more suitable name.

 

[soxfan]

@SOC- I had the TTT done a few years back and wore a Holter Monitor for 24 hours. Everything was normal with my heart and I passed the TT with flying colors.
The first thing I do when I get up is drink a big glass of water. I don't feel thirsty but do it anyway.

I have not taken my BP first thing in the morning. I have a cuff so I could check that.

Not one doctor has ever offered me anything for OI or even mentioned the possibility that I even have it. I was seeing Dr. Komaroff in Boston a few years back and even he didn't talk about it or even ask me about it. I guess since I passed those tests they figured it wasn't an issue for me.

All I know is that I feel fatigue within a few hours of getting up. It doesn't hit me right off.

 

[SOC]

@SOC- I had the TTT done a few years back and wore a Holter Monitor for 24 hours. Everything was normal with my heart and I passed the TT with flying colors.
The first thing I do when I get up is drink a big glass of water. I don't feel thirsty but do it anyway.

I have not taken my BP first thing in the morning. I have a cuff so I could check that.

Not one doctor has ever offered me anything for OI or even mentioned the possibility that I even have it. I was seeing Dr. Komaroff in Boston a few years back and even he didn't talk about it or even ask me about it. I guess since I passed those tests they figured it wasn't an issue for me.

All I know is that I feel fatigue within a few hours of getting up. It doesn't hit me right off.

The types of OI that take longer to show up are not as well known, so often doctors don't consider them. I suppose it's possible you have something like that. Have your read Cort's article on OI?

 

[soxfan]

I will read it....I have a question since this is another huge problem for me. I ALWAYS feel worse after I have been laying down in the afternoon. I have to rest around 3 or 4 but I never fall asleep. I just need to lay down and close my eyes. It is never really restful and I always feel just terrible when I get back up. I feel much worse after the rest then I did before I laid down.

Anyone else have this problem? I would rather not have to rest since it doesn't help and I feel like heck when I get up but I get to the point where I have to...

 

[jann1033]

I will read it....I have a question since this is another huge problem for me. I ALWAYS feel worse after I have been laying down in the afternoon. I have to rest around 3 or 4 but I never fall asleep. I just need to lay down and close my eyes. It is never really restful and I always feel just terrible when I get back up. I feel much worse after the rest then I did before I laid down.

Anyone else have this problem? I would rather not have to rest since it doesn't help and I feel like heck when I get up but I get to the point where I have to...

Yeah, I never nap since I feel much worse after getting up. It hits me around the same time as you but I just lay on the couch ( or semi recline if I'm really sleepy and dont have to go flat) and rest, with a TV show on I don't have to follow a plot but keep me awake. Maybe if I could only sleep for 1/2 an hour or so but I'm dead asleep for a few hours, feel like a truck hit me then am up all night so I don't nap. Maybe it you rested sitting with feet up or propped up it would help. If I stay awake I'm very tired for the rest if the day but at least I sleep some at night.

 

[jann1033]

I too have an ot oi question. I have developed the habit of sitting for a few minutes when I wake in the morning or after I lay down before I stand up. If not I get dizzy but never noticed my heart racing then (some other times but not then , i have a murmur and some out of rhythm beats showed up on my sleep study but no dxed anything else) . I have av malformations, slight enlarged heart and tortuous aorta but that's it vascular wise. I can't stand at all though, like after a min I'm getting tremors in my left side, 5 mins I feel the urgent need to sit down or fall down. I used to faint all the time as a kid, hot water or weather is out. So I have some signs according to the linked reference but guessing that is not something vascular specialist would normally look for? My surgeon is chief of vascular at Cleveland clinic and def .knows his stuff ( every other vas.specialtist was not willing to tackle my really extensive avms. )otherwise but is this more a CFS linked problem?