Severe tiredness

[Moonbug]

Hi all I was just wondering how many of you suffer from tiredness I just seem tired all the time it's horrible apart from this I have no other complaints but I have never had it this severe before . H x

[Suzypawz]

Hi, yes I'm tired most of the time, other stuff as well tho' but the fatigue is frustrating......sometimes it may be your body just telling you to have a rest!

Mine comes & goes, some days not too bad others, I'll be ok one min' then it'll hit me & I have to give in

Just keep possitive & keep smiling x

[Moonbug]

Thank you I just worry its cause there is a clot or something like that but is this just part of the disease tiredness. H x

[Suzypawz in reply to Moonbug]

Are you on warfarin? x

[Moonbug]

No 150mg of aspirin daily. H x

[Suzypawz in reply to Moonbug]

Ok, it may just be part of Hughes, I can understand your worry as we have all been there if you are ever really worried by any symptoms always get it checked with your doctor.

I have been one of the lucky ones & not had a clot ( touch wood! ) so I havn't experienced what one is like.

The tiredness is different for everyone too.

Sue x

[Lesley_D]

Hi moonbug H

I am often tired, and know many on this site talk f severe fatigue - some say when their INR is low so their symptoms including fatigue is worse - I do have to say, for me on the occasion I have managed to work through it and exercise, it can help, although motivation is a big thing

Keep well, warm smiles to you

Lesley

[Moonbug in reply to Lesley_D]

Hi Lesley thanks for that message I may well try the whole more exercise I just kind of let it defeat me when it happens which I know I shouldn't it's just hard sometimes. H x

[Suzypawz in reply to Moonbug]

it is difficut as it can take over & seems so much of an effort, but I know I find it will benefit me if I push myself.....in mind & body x

[Moonbug]

Touch wood me either i always feel like ive cursed myself when i say that.i feel like a ticking bomb which is horrible . Are you not on any meds at all ? H x

[Suzypawz in reply to Moonbug]

I know I say that too!!!

I'm mainly on warfarin & as long as I'm above the inr of 2.8 I'm not too bad......

Sue x

[Moonbug in reply to Suzypawz]

Oh how comes your on warfarin I ask my doc about this and he said they won't give it if there is no clotting event. H x

[Suzypawz in reply to Moonbug]

I was on warfarin as the 1st 'specialist' put me on it as they were 'unsure' wether I had a small stroke in the beginning.....

Then about 5-7 years ago 2nd 'specialist' questioned wether to take me off it?!! they said how did I feel about it & I answered I had already been on it & felt very uneasy to come off it now...& that prevention is better than regret...they agreed with me....phew!

You have to remember everyone is different & maybe you'll be ok just on asprin.....have a good chat with your docs & see what they think . Sue x

[Hidden]

I find if I sit all day in front of the tube or otherwise remain physically or mentally inactive, I can dose off and on all day long. But if my mind is active or I am working, I have little fatigue. I have and will again in 2 weeks, drive to Salt Lake City, nonstop, in 18 hours just keeping my mind busy.

[Storky]

Plaquenil is supposed to be helpful for fatigue. Perhaps discuss this with your Doctor.

[Suzypawz]

I take plaquinil....I find it helps with the joint pains....I hadn' realise it helped with fatigue? oooo.... I'll have to look into that now!!

[Moonbug]

Hi Jimq I think sometimes this could be my problem I never seem to notice when I'm out shopping but the min I'm working or at home I'm exhausted , that's a long old drive I panick on a 3 hour journey. Hughespatient is this what this med is for tiredness . Thanks all . H x

[Hidden]

Plaquenil is the way forward with Hughes patients It helps with the joint pains and fatigue, and has also been discovered to have anticoagulation properties so is now being feted as the wonder drug.

All APS patients at St Thomas' are now being prescribed Plaquenil.

It can take about two months before it works though and can upset your stomach a bit at the beginning - I found taking it with breakfast helped.

[Barbie]

The plaquinil helped me for a while, but I guess my body got use to it. Last month the Dr put me on Vit D. I am suppose to go back in 12 wks to see how it works. I am use to the fatique all the time, what I can not stand is that if I do anything slightly active I feel like a truck hit me directly after. I have to take a short rest (15 min) to recoop. I have always been active so this upsets me most. I took up golf thinking that would be easier, but still hve issues after practice. Dr has not put me on any blood thinners as of yet because I have not had an "issue", but my blood has gotten so thick it is nearly impossible to do labs on me. I think since the Dr. send you to a different lab instaed of drawing the blood themselves, they do not know these things.

[SassyOne]

I just got dx with aps but have had symptoms since i was a kid. I have times where I get rediculously tired and can't keep my eyes open but the worst it has ever been for me is during my pregnancy or after a seizure. Lately it has been worse than normal and I get tired fast after doing too much. The other day I had to do my old job for just a few hours & I got hit by the Hughes bus. I was exhausted, every bone & muscle in my body hurt. I keep telling myself it's all in my head I suppose it's easier than dealing with it. I can see we are not alone in being tired.

[jessielou]

Hi moonbug

Tiredness here too. I'm battling to stay awake now. Not helped by a power cut about 5am today, which because we live in a pub set the fire alarm off. Lovely way to wake up. Not!!!

I'm on plaquenil and it helps but still bone achingly tired sometimes.

Pacing yourself and listening to your body is the only thing that helps.

Take care gentle hugs love sheena xxxxx

[MaryF Administrator]

my 14 year old daughter had just started on plaquenil and the difference in funny turns and fatigue is most noticeable, I only wish I had had my very obvious lupus diagnosed when I was young as too late for me due to severe psoriatic arthropathy, which it would irritate! However to see my daugther looking a bit better is joy enough for me! Mary F

[Hidden]

Hi I suffered from debilitating fatigue until I was diagnosed and prescribed 320mg/aspirin and 200mg Plaquenil 2x/day....now I have to pace myself....if I overdo it I start to feel "malaise" flu like symptoms...I believe the fatigue is a red flag...my body telling me to take it easy...so I listen!

Re: lab reports...I live in the US and the laboratory that is "in network"(ie my insurance pays) does not perform the testing for APS as well as the "out of network" (ie insurance does not pay....I'm appealing though). My Rheumatologist says that with APS and immune disorders the assays have to be "sensitive" enough to pick up proper information....and she draws the blood herself...I credit her "saving my life". I'M 63 (DIAGNOSED at 61) and was on the way to getting a stroke

[Hidden in reply to Hidden]

I have been covered by most insurance companies in the US and never had a problem with coverage for ANY blood test that is ordered by a Doctor. What insurance company do you have?

[Hidden]

My insurance plan has "in network" providers....and "out of network" providers.... Empire will pay up to 80% of "out of network" once I reach a $1000 deductible....I have The Empire Plan (uses United Health) and is about a good a plan as once can have in the US....I am a retired New York State Civil Service employee...and belong to PEF Professional EMployees Federation etc....so I am sure my appeal will go thru.....its just a hassle......thank you for your interest

[Hidden in reply to Hidden]

I have UnitedHealth Care also and they paid for everything the last 10 year, less deductible. In 2010, the also paid fully for my Coaguckek home testing system. I understand they don't do that anymore. My plan is group plan, United Healthcare Choice Plus. I don’t see how they could possibly deny the test as long as it is order by your Doctor. Good luck.

When I had my fist stroke, the emergency room doctor ordered all those tests within a few hours of admission.