Flare Up?: I was DX with APS(positive... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Flare Up?

blondie26j profile image
15 Replies

I was DX with APS(positive LA) about 8 months ago after I had a DVT. What do people mean when they say they have "flare-ups"?

I am under 30 years old... and for 5+ years have been fatigued - just about every day, lack of energy....I wonder if this is related to APS? Is it typical to have lack of energy with APS or lack of energy not related to APS?

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blondie26j profile image
blondie26j
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15 Replies
TJSTICKYBLOOD profile image
TJSTICKYBLOOD

Oh yes lack of energy and tiredness is most definately a symptom of APS I had it for years before i was diagnosed and just thought it must be normal to feel the way i felt when i was diagnosed things started to make sense.Even though I am diagnosed i still have it but I try to pace myself and rest

jetjetjet profile image
jetjetjet

hi blondie- it sure is a problem , i have been hyper- wired for 220 all my life ,i can get up in morning ready to take on the world ,only to find 2 hours later i dont have enough energy to walk to my truck , this doesnt happen all the time but it does happen freqently, it seems to matter though just where i am with my multiple disorders, and to include my inr wich has always been all over the place.----jet

MaryH profile image
MaryH

Hi,

I am having a flare-up at the moment. Hot, red face. Reduced hearing; reduced vision, labrynthitis; reduced energy;freezing cold legs and feet. Energy conservation is the only way, we have to stop and just leave enough energy for the things we HAVE to do, not what we would LIKE to do. After first diagnosis I felt like you do all the time, these days I do have some lee way, thank goodness, so here;s hoping it will get better for you. Are you on warfarin? Love MaryH xxx

Herb profile image
Herb

If you have Lupus you know it can flare up (suddenly get worse), APS is just the same.

Lesley_D profile image
Lesley_D

So a flare up, in essence is when the symptoms of the disease are exacerbated or worse than normal

Lesley

:)

Herb profile image
Herb in reply to Lesley_D

Yes, exactly.

paddyandlin profile image
paddyandlin

Yes Lesleypeople find that the fatigue or joint pain etc will be worse than normal. this can also hapopen if the person has over don it pushed through rather than rested.

paddy

Lesley_D profile image
Lesley_D in reply to paddyandlin

Paddy

Pushing trough is something I do often. My friends family say, Les your tired you don't look well, rest. I say OMG I am fed up of resting, no will work through it! _ I wonder which is best?

paddyandlin profile image
paddyandlin in reply to Lesley_D

we say push through everyone else says rest i am afraid some times a patients we can be blind sided and it causes more issues

Lesley_D profile image
Lesley_D in reply to paddyandlin

See I am with you, but surely if we push through and manage to do something then we have achieved. I am not sure about alot of people, but I find my confidence and self esteem are low since I have been sick. Put this with struggling to deal with the gain in weight - 2 stone in the past year - I need to do all I can to push myself, in doing so as you say I may cause other issues, but it also means I am not, nor will I give in to this illness.

Thanks Paddy :)

Happy Sunday to you

paddyandlin profile image
paddyandlin in reply to Lesley_D

TOTATALY AGREE lol happy sunday to you

Manofmendip profile image
Manofmendip

Hi everyone

I've been having 'funny turns' for over 4 months now, with an INR around 4.0. A sense that I've been pushed or turned or the floor is bouncing (symptoms of labyrinthitis), shaky legs, tingling or numb fingers and toes, alternating shivering and too hot. Dull headache, abdominal pains, joint pain in right, little finger that comes and goes quickly and other things too.

I'm seeing Prof Hughes again next month.

Love to all

blondie26j profile image
blondie26j

Yes - I am on Warfarin - they are keeping my INR 2-3(they like me on the higher end of that range).... my number has been fluctuating recently... 2.1 then 4 then 1.9 and currently 2.4, finally in range again... I know my diet has been effecting those numbers... So I am trying to be more consistant in my salad eatting(dark greens)...... as far as energy, I can nap/sleep anytime, anywhere..... for years have been experiencing this..... I hear that people feel that when their INR is low they are more fatigued... I will try to document my energy every week and see if it correlates with my INR.

Lesley_D profile image
Lesley_D

Blondie,

I saw haematologist last week re APS - she wanted INR to be kept between

3 - 4 but did say if it went down to 2 then I would need heparin until INR went back up. Up til that point my INR had been set at 2.5 - 3.5

Smiles

:)

Lesley

Herb profile image
Herb in reply to Lesley_D

That sounds good Lesley.

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