Sticky Blood-Hughes Syndrome Support

Crazy debilitating fatigue then bursts of energy?

Hello everyone!

Does anyone else have crazy debilitating fatigue and then bursts of energy when you try to catch up on all the chores you missed along the way?

I sure do. When it's a bad flare, I can be in bed for days feeling guilty about all I need to do. Then when my energy finally returns, I am a whirlwind trying to catch up. Of course, there is never any total catching up on my chores and "to do lists" because even when I am not in a huge flare up, I get afternoon exhaustion where I accomplish pretty much nothing (from noon or 2:00 p.m. on).

I think about video games where the character has an energy bar over head. If I use too much energy early on, I'm shot for the rest of the day. If I do too much in one day, then I'm in bed the next day. Then there are flare-ups that last for days or weeks where climbing the stairs, taking a shower, or putting on makeup uses up 50% of my energy for the day. On those days, dishes and a load of laundry are all I get to. That's not enough when there are 5 of us (me, my dear husband, and three children). Therefore, I have the dreaded piles. Piles of laundry. Piles of clutter. Piles of "to do's". And piles of to be put away.

When I have those bouts of energy, I do as much as I can to tackle a pile or two -- but there is never enough energy. In addition, when I can't get out of bed, a child will say to me "but mom, you're always tired." And I am afraid for the most part that is true.

But on the days and mornings where I feel like my old self, I try to squeeze in as much fun with the kids as I can. Biking (slow and short route of course), strolling in a park, dancing and spinning our five year old in a store line, and going to the grocery store and going up every aisle. Most trips to the grocery store, I skip many aisles because that steals energy that could be used for other things. Therefore, it's a special occasion when we take our time and go up every aisle.

When I'm starting to fade (feel exhausted), I automatically go into power saver mode. Nothing gets done, but the essentials. Does anyone else have this? The energy saver mode? The piles and messy house or office? The bouts of fatigue followed by energy where one tries to catch up? And what are your energy saving habits?

All the while, I look healthy so friends say "but you look so healthy". Of course, if I wasn't wearing makeup to cover the dark butterfly rash (malar rash) on my face, they might not say that. :-) And of course, for the outings I make, it's at times where I have energy or where I stayed in bed all morning so that I can have the energy for the event. People don't realize what's going on behind the scene so that there is a pretense of normalcy. 99.9% of my friends don't know because they won't understand. How can they understand if they have never gone through it?

That said, my friends would all say that I am extremely happy and content. My husband jokes that I have the happy gene. That is true. I also have the giddy gene (which I understand can be a symptom of Hughes Syndrome). I feel blessed in so many ways and I am thankful. When I have energy, I chose to dance and have fun over just catching up on chores. If I didn't have the fun, I believe I would be very depressed. I'm trying out for a local theater production of Anything Goes next Sunday as a tap dancer. It's silly, but I am having so much fun practicing. Even if I don't get in, the neuroplasticity of working the brain and forming new connections must be beneficial.

Sorry for the long ramble. Time for Sunday morning dishes. :-) I hope you have extra energy bars added to your supply this morning. Have a great Sunday!

10 Replies

Yes.. I exist like this a lot of the time... and this springs to mind.

I have very very good routines but I do have to rest as well as get stuff done and have good systems in place. People do not always understand... I think there is a lot of misunderstanding around, however I try not to think of that as it is a waste of my energy. MaryF

1 like

Thanks for the link MaryF. I had seen the subject alluded to often but seeing the original article puts it into perspective.

I often use the analogy of a faulty car battery that you CANNOT replace. You have to find ways to maintain it and keep it working as there is nothing else. The problem is that the car develops other faults if the battery is draining down. So instead of just a problem with a flat battery the electrical stuff fails as well etc


Yes..glad I put it on. MaryF


Yes, the idea of a faulty car battery is a closer fit.


I too have had a heavy cloud of guilt over me for years. I thought, despite my best efforts, I was lazy and muddleheaded much of the time. Those times would be followed by moments of energy and the ability to write again and that convinced me that I am NOT lazy. To finally understand I have a disease and read the posts here might make it easier to cope.


is it you on that Picture? I like it. Would like to paint it really. Are you a writer? You are so right this illness affects a lot of different parts of the body.

I loved to paint freetime and I was really good at it. I started when I was 42 years. I painted more than hundred paintings during the years and then came the Auras and doublevision and lost of the sight of one eye. I stopped in 2005.Could not see clear. I am now 70 years.

Started Warfarin in 2011 and suddenly i could see again .A miracle! I painted one painting in oil but I have not dared to paint aquarelles yet. My coulours are lying in the drawer and get dry. I am so afraid that i have forgotten how to mix the colours and my fingers hurt when I hold the pencil but I must try again .I have become afraid. I never was.

Best wishes from Kerstin


No, it's an old Avatar picture but it is not unlike me now. I do write. Marine related short stories , a novel nd a few instructional manuals in navigation. All short run, small distribution stuff. I'll write that great American novel yet! My vision has been blinking in and out of focus lately. Today it is good. I now blame everything mysterious or things that I don't like on APS.


This is a site for people with APS (Hughes syndrome).

Do you have APS yourself? If so you would know that we are very sensitive to all foreign products. Our immune system attacks our own tissues.

Kerstin in Stockholm


Hello Kerstin, I was searching on our site here and saw this post from you, would you be able to further explain if you can on how our immune system attacks our own tissues? I have to order the book still, I keep needing to do this as I have APS as you know now after our talks but when I saw this specifically it caused an immediate reaction as my immunity is in the tank and the tissue seems to retain water, break down around joints etc. But no one has ever really explained it to me??

Thank you kindly if you can...I hope to read the book soon soon so I can further understand. Its been so hard not having anyone here that really knows about APS. I go next month to the specialist that is a few hours away to hope to find answers.

Thanks so much my forum friend, Kerstin :)

Becca in Oregon


Hi Becca, Glad to hear from you again!

I am sorry but I can not explain more in detail about tissues. We are not medical trained here and I guess you have to wait for that book that I mentioned earlier. It is very difficult to understand this illness. It has to do with cells and mitochondries. So difficult but the whole body is involved as you can understand.

The main doctors are Rheumatologists and Haematologists but even Neurologists and Gastroenterologists, Orthopaedics are becoming involved

Good luck when you meet the Specialist next month. Write Everything down

Your Forumfriend Kerstin


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