APS, feeling fatigued? Help! - Hughes Syndrome A...

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APS, feeling fatigued? Help!

apug1795 profile image
18 Replies

Hi everyone! Just joined this forum a week ago :) anyways lost story short, I was diagnosed with APS in the end of march/early april. Ever since then, I have been noticing especially about a month ago, I get extremely fatigued just sitting down for not even half an hour which is kind of bothersome because I am a student with a heavy courseload trying to study all the time (trying to become a doctor!) I know that I got to get up and walk around which sort of helps but its hard to study while walking around because i have got to write lots of notes. does anyone have any suggestions that might help? Thank you!

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apug1795 profile image
apug1795
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18 Replies
charlieab profile image
charlieab

Hi

Before I started getting ill last year I was meant to be finishing off a part time phd. It had been going really well and maybe I will get back to it some time. Just too darn depressed atm!

Anyway, when I was working on it, I use to drink lots of tea. I mean almost non-stop. Also my attention span is quite short. Put those two things together and I was getting up for a pee about every 20 minutes. The intesrting thing is that this seemed to result in being really productve work wise. I was whizzing through writing up my thesis. I think the brain (at least with some people) needs a break every 20 mins to work at its optimum. If we stayed chained to the desk for long periods then productivity quickly declines.

The "moral" of this story (which maybe has tmi about bladder habits) is that frequent breaks could prove productive to your work and good for your circulation and APS. But maybe will take some time to reprograme your work habits and how your brain responds. The thing is to keep te breaks short, otherwise its like you have to start from scratch when yoiu go back to your desk. For me the ideal break was about 5 minutes, the time it took to make a cup of tea! But with APS might be good to have a little run (on spot or back garden) while the kettle is boiling.

These are just ideas and may not be applicable. But good luck with the studies.

best wishes

R

Manofmendip profile image
Manofmendip

Hi

Who is managing your APS, do you see an APS experienced consultant?

Dave

daisyd profile image
daisyd

Morning just a quick question, I go on several sites I need to do something as I am medically retired and feel I need to help people know about sticky blood so they get treatment before they end up like me.

Ace about anticoagulants, epilepsy as I developed this due to Hughes syndrome, anyway please can you tell me if It is ok for them to look at this site, if i remember I also mention the Hughes foundation site

Just that some people are told on there that they have to have sticky blood to be on this site, I know it's because their are some people who can cause problems but it would be helpful to know please

No idea if this makes any sense, it's still early in the am for me

MaryF profile image
MaryFAdministrator in reply to daisyd

It is ok to look, but some will not have Hughes/APS, and our new charity website will be available soon which is The Graham Hughes International Charity, which will carry great information. MaryF

daisyd profile image
daisyd

I have improved slightly since starting on iron medication, low iron stores but not anaemia

MaryF profile image
MaryFAdministrator

Hi and welcome, the fatigue plagues most of us, but there are a few things we can do to help. Obviously the medication you are on has some bearing apart from Aspirin and anticoagulation, some do very well on Plaquenil.

I did not get on with it due to my usual extreme allergic reactions, (Stevens Johnson Disease), but it suits my daughter. Also make sure that your GP and or consultant is looking closely at your Thyroid, plus B12, D and Iron as all this needs to be at a good level or the fatigue will be worse. I work out every day in 20 or 10 minute bursts. I certainly feel more tired without helping my circulation like this. I look forward to finishing your training and looking after us all!! MaryF

Lure2 profile image
Lure2 in reply to MaryF

Hi Mary,

I looked up on Steven Johnson disease for the first time.

I hope you do not have too severe and several symptoms from it as it must be very difficult together with the other illnesses.

Hope you will be on a "gig" playing the violin soon.

Love from Kerstin

MaryF profile image
MaryFAdministrator in reply to Lure2

Yes have done two over the week-end. I just have to be careful with regards to drugs etc. MaryF

HollyHeski profile image
HollyHeskiAdministrator in reply to MaryF

I too had to look it up, like Lure2 hope it doesnt cause too many complications and you have it in control.

I also try to exercise daily, walking my dogs and if I have the energy 10 - 20 minutes of step dancing and stretching. I dont feel like it at the time but funny enough makes me feel energised after! Get very sluggish and larthargic if I dont. Also down to pacing yourself, with work, home etc (easier said than done!).

MaryF profile image
MaryFAdministrator in reply to HollyHeski

Yes I did 25 minutes this morning, and now about to go and do another half and hour, my mix of disease is tiresome, but I just work with what I have, Mediterranean diet minus gluten, (brazil nuts for the selenium), and tons of supplements, plus LDN, Aspirin and NDT. Also a portable magic wand! MaryF x

HollyHeski profile image
HollyHeskiAdministrator

Whats NDT? And I want a magic wand!!

Wittycjt profile image
Wittycjt

Can you down load a recorder app for your phone and use it instead of taking notes... so you can listen to it later for studying? Cindy in NJ, USA

apug1795 profile image
apug1795 in reply to Wittycjt

Well I'm a full time student and that's not really an option for me

Ozchick profile image
Ozchick

My daughter finished her medical degree and is in her second year of internship. The course is long and hard and she got to the final year and dropped out because the fatigue, work and study were too much for her brain. Her words "My brain just can't fit any more in". She doesn't have APS and got fatigued with the work load. After a year off she went back to finish her degree with a revitalised brain! (She is also a registered nurse and also worked part time as a nurse to support herself while studying medicine)

I guess what I'm telling you is that if you need to take a break and defer any of your course study while you get 'well' do so-it's not the end of the world if you have to take another year to do so.

Last year i spent 3 weeks in hospital and quizzed the students who came around and about half had deferred a year. They said the first year and the last are the toughest!

apug1795 profile image
apug1795 in reply to Ozchick

Thank you for your words! I come from a family full of doctors and surgeons and dentists and what not so it's a big burden definitely because I was raised by these people who were always on go go go mode. I'm graduating from my undergrad next week and I'm taking a gap year to try to get better before I start applying :) I don't want APS to stop me from becoming a doctor.

Dot69 profile image
Dot69

When fatigue hits me I have to lie down maybe 20 minutes will do it then I'm off again, as long as my head is resting I can cope Good luck with your studies

Kerlampert profile image
Kerlampert

Aloha from Hawaii!

I like to swim...both for exercise and freshing up...

Makes me feel great!

Good luck!

Wittycjt profile image
Wittycjt

So, how are things going?

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