Question on Fatigue

[cjhnsn29]

Patrickreed, Fatigue is part of the diease for sure. I really don't know how you work that many hours a week. That probably contributes you to be more tired. Dr's actually took me out of work because of the meds and tired alot. My husband tells everyone I am good for half a day and we never know what part of the day. Working all those hrs and then watching the little ones alot I give you alot of credit for that. You are doing so much and I have to say I couldn't do it... I am really shocked that you can function most of the time... It's hard for a spouse or partner to understand what we go through. It's really hard. Good luck. C.J.

[PattyL]

Fatigue is a big issue I work 24 hrs a week that's about all I can handle at this time. I am raising an 11 yr old. I know that zombie feeling all to well. I also sit on my shift and walk around to keep things moving. By the time I get home I am exhausted. Fatigue is a part of our illness. It is something we will have to deal with until we are in remission. I wish you all the best. Listen to your body I know we tend to push ourselves past limits but..sometime we just can't.

[Dirty Don]

FYI: fatigue doesn't seem to go away despite any kind of remission, drugged or not. I've been off all meds for nearly 2 mos. now and still experience fatigue...perhaps not as badly as in the midst of the flaring, but certainly still there. Seems to be a part of the disease that doesn't completely go away despite all efforts. Best to you.

[annekat]

FYI: fatigue doesn't seem to go away despite any kind of remission, drugged or not. I've been off all meds for nearly 2 mos. now and still experience fatigue...perhaps not as badly as in the midst of the flaring, but certainly still there. Seems to be a part of the disease that doesn't completely go away despite all efforts. Best to you.

I would generally agree with this, as parts of our tissues, organs, and blood vessels have been permanently damaged and don't function as well as they did pre-WG. Damaged blood vessels and lungs don't deliver oxygen to our systems as efficiently as before, for one thing. But everyone is different, we have different levels of WG involvement and damage and some may have more permanent fatigue than others. I've been dx'ed with WG since 2011 and have had some ups and downs, but must say that my fatigue has recently diminished quite a bit. This may be partly to having been prescribed some inhalers to help me breathe more easily, and I thus get more oxygen. But I also did not have a detectable flare this winter, for the first time, my blood numbers are all good, and I feel like I'm in a medicated remission, though no one has said so. I'm on MTX, prednisone, and Bactrim. If I quit the meds, it's fairly likely I'd flare again and the fatigue would come back. But you sound like one of the better examples of someone who can continue to work a heavy schedule while having WG.... not that I think you should, considering the fatigue, but some of us just cannot do that, period. If you were diagnosed early on and got treatment right away, you may have gotten away with less tissue damage and actually less of a fatigue problem than some of us. And if you are younger than middle age, that could be a factor, too, in being able to push yourself more. I still think a lighter schedule would be best for you in the long run; if you are not in remission, too much work and stress will delay that, most likely. I hope you do get to where your fatigue is less, but even then, Don is right, we can expect it to remain to some degree throughout our lives, and we learn to minimize it by taking it easy and not overdoing it, and giving ourselves time to recover from extra stress or activity. Good luck to you!

[amy.r.kahl]

I definitely have fatigue when especially when I'm having a flare up. I try to push through it as long as I can. I find that going on a walk gives me a new burst of energy but you have to push yourself to actually walk but taking a nap isn't bad but if I do take a nap during the afternoon I try and not drink anything with caffeine cuz then I will not sleep at bedtime. Hopefully you will find something that will help if not I say talking to your specialist! Best wishes


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[cjhnsn29]

Annekat I relate to the family not understanding at all. One day I can be great next day I can't even function and they say you were fine yesterday. My Dr explained to them there are good days and bad days you never know when it's going to be.it's hard to make plans to do things because some days you are more tired and exhausted. Then when you cancel there response is I knew it. That makes me so aggrevated. It's hard to understand unless you are actually going through WG. That's why I am glad I was able to find this site. I also believe that if you get really stressed out it makes it worse. My husband has noticed that happening. I have problems breathing as well due to the saddle nose and when it is 100 degrees here and the humidity is like 115 it makes me alot worse. I also have an inhaler now and it does help.

[annekat]

Annekat I relate to the family not understanding at all. One day I can be great next day I can't even function and they say you were fine yesterday. My Dr explained to them there are good days and bad days you never know when it's going to be.it's hard to make plans to do things because some days you are more tired and exhausted. Then when you cancel there response is I knew it. That makes me so aggrevated. It's hard to understand unless you are actually going through WG. That's why I am glad I was able to find this site. I also believe that if you get really stressed out it makes it worse. My husband has noticed that happening. I have problems breathing as well due to the saddle nose and when it is 100 degrees here and the humidity is like 115 it makes me alot worse. I also have an inhaler now and it does help.

Well, I live alone, and the family members I see are mainly siblings, and I guess I can't expect them to get it as well as if they actually lived with me. It sounds like your husband sees the effect of stress on your symptoms and overall well-being; that is good. I think it is this way with all auto-immune diseases, most likely, and if you put together everyone who has those, it adds up to quite a few. So the public needs to be educated that an AI disease will affect people this way, and that's just the way it is! Living alone, I probably get to avoid stress and too much activity involving other people, a lot more than someone with a spouse and kids. I don't know how people do it with so much going on in their lives, and they need all the support and understanding they can get from their families and friends. Unfortunately, people tend to see fatigue as something everyone has, if they lead a busy life, so have a hard time seeing our fatigue as something different. And as for canceling plans, I just try not to make too many, and I suppose they think I'm anti-social. It can get a bit better over time, and I hope it does for you.

[Green Grass & High Tides]

Hey Patrickreed!

Being able to be present with the kids is a challenge and a great treasure. Ultimately, I chose to be poor and home more with the kids. I feel blessed in that when I took that leap of faith the financial stuff worked itself out. Very hard decision and took some hard work to integrate. I pray and meditate and try to help others. I think those things help when I do them.

My first wife never could understand the wegs fatigue. She's long gone. I find that knowing and telling family members what my Activity Level is, that it helps everyone to understand.
Saying something like "I only have one activity today. I have to use it to for cardio and get organic veggies to juice." or "I have to do my strength training this am but I'd love to get dinner tonight after I rest." The wife and kids may not like it but at least we are communicating and they know what to expect. "I'm going on my walk, you wanna come?" is always a good one for the kids too. One thing is for sure. They much prefer me doing something other than talking about my wegeners!

I have three kinds of fatigue:
1. Wegeners Fatigue - This feels like total depletion and I can sense that if I keep going I'll get sick, an attack somewhere, eyes, sinus, lungs, cns, gi...somewhere.
2. Neurological Fatigue - From a wegeners stroke. Loss of electric signal telling body to move. Flat feeling. Weakness, sometimes loss of movement.
3. Medication Fatigue - Feels like sickness, tiredness, lethargy, myopathy, anxiety, aggression, depression...

Addressing #1 Wegeners Fatigue- It takes a healthy daily regimen for me to overcome. Nutrition, Restorative Sleep, Raised Anabolism, Reduce internal and external Stressors. I walk / cardio through fatigue at anything under an 8 level severity and I chart it daily. Sometimes I'm a slug, dragging across the grass but tapered exercise really helps with fatigue. If it's over an 8, I sleep. Today I slept

But dealing with family life and kids within this realm is sensitive stuff. If I don't know what my body can handle, how can I be of use to the kids?

The Stroke people suggested "KNOW YOUR ACTIVITY LEVEL".
Is it a 1, 2, 3 or 4?

The Stroke people asked: How many activities can you do per day and still maintain health?
We only have so much energy per day. How much can you do without harming your health?
That is how many activities I plan to do per day. For me that is one. Usually exercise and nutrition.

Still, the fact is, sometimes I sacrifice my health to make sure there is food on the table and to spend time with the kids.
Fatigue is the least of the dangers of that lifestyle, at least long term for a weggy, but I try to balance it.

[Jayne 14]

The fatigue we feel is hard for anyone to understand . Getting close friends / family to read the spoon theroy helped . And understanding my body too .
Big day = next day sleep / recover .
Pace yourself .
And try to accept the new normal


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[jakekell]

Fatigue is also my issues, has been from the onset of wegs about 9 years ago. I am finally losing some of the pred weight I gained, helps some. I think it is just part of it and very tough for other's to understand because "we look so normal".