Sticky Blood-Hughes Syndrome Support
8,334 members8,512 posts


Am I on my own or do others get so frustrated they want to shout and maybe cry.

Today, I'm feeling really detached from everything, the worlds passing by as if I'm in a dreamworld. Is this the "brain fog" everyone talks about.

My wife appears to be running around doing loads, I've got things to do, but quite frankly I'm feeling drained, I want to do things, I don't have the energy, and then I'm getting angry with myself. My wife keeps saying go to bed, I don't want to, I want to do things.....Grrrrr

I only get days like this once in a while but when I get them, I get so angry with myself! Is this normal or am I crackers lol.

6 Replies

Hi there, I think this is quite normal.. and you have to learn to pace yourself rather than boom or bust. I often have days where I have an hour in bed, then two hours up, not like that all the time, but if I do not factor in the rest, I pay for it, better days ahead I hope for you, and yes brain fog is common. Mary F x


I have read what you have written and as I can understand you are not on any Warfarin or other medicin. What I can understand you have not been diagnosed having APS or perhaps Lupus, Am I correct? It sounds very familiar to me with your symtoms which you have obviously had several times for a long time and also possible TIAs. Am I right?

If I am right, then if I were you, I would see an APS doctor as soon as ever possible. I live in Sweden but we have this illness here too and the symptom also .What I can understand you have got medicine for depression. See someone that KNOWS APS!

Take good care!




Classic Hughes to my mind- just how I feel right now too. Look up 'Spoon theory' and you will realise you are not alone. 'Pacing' is the in word for pain clinics way of reducing such occasions and it certainly applies to many of us- except that we tend to get knackered first and then rest instead of knowing when to stop and rest to avoid the pain etc. (Spoon theory was mentioned on the BBC three counties radio show today!")

Its great that you have found this website but dreadful, again, that from your bio you seem to be getting the bu..s rush. I hate to recommend private medicine as such but the expense of seeing Prof Hughes has proved invaluable for me and many others. By all means try getting your GP to refer you to St T's, but there is probably a wait for there and Prof H.,

Depending where you live, there might be another 'recommended doctor' on the list elsewhere on this website.

Best wishes


1 like

Your not alone Simon I felt the same yesterday so i went in the lounge & let out a big screeeeeeeeeam., ah thats better. I finished off with a good cry. :-)

It's so hard to put into words...but it's like looking at the world from outside in & your not part of's horrible.

Your mind is telling you all the things you should be doing but the cronic lethargy is stopping you.

Hmmm I also hate that one where your told to go to bed.....I dont want to go to bed I want to be able to function Grrrrr

It's a swine of an illness but try to keep your chin up, i'm off to the Drs today to 'try' & battle for some help with this curse. Jillymo X


Well Simon my friend l have had this condition since l was 21, your going to have ups and your going to have downs ...just try to remember that there are some things you will have to do now if you have this condition these are very important ...NO MORE DRINKING , STOP SMOKING,and especially important throughout your life watch your DIET.

Knowledge is power however,its how you use this knowledge which is most powerful ....l find it very it very important for me anyways to doctor myself alot and not just wait for doctors to tell me what,s wrong with me it keeps my brain working as well helps me understand what is wrong with my body so if l do see a doctor l can have sit down with my my doctor and ask the questions and actually get the answers l need for my health... l don,t know what the health care is like over there but where l go is in Hamilton Ontario for which l am told is the 3th largest clinic in the world for APS this gives me some top doctors....funny thing is l just found this place this only 2 months ago after all these years.chow my friend .....your Canadian friend Jed


I agree with your recommendations for brain fog. I hate the fog. I watch gluten and recently became a vegetarian. It helps watching the fat. I also believe to pace yourself this disease loves tiredness.

Good luck and feel better Simon


You may also like...