Sudden onset of weakness and lethargy - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Sudden onset of weakness and lethargy

Mystynzl profile image
15 Replies

Hi Folks,

I got out of bed this morning and felt fine. One hour later i felt that I was drugged. Really tired. really weak and needed to sleep. I woke up an hour later and I felt exactly the same. I feel like I have been drinking (I wish). Like my movements are in slow motion. I am still feeling like this...is this something that others have or should I be concerned?

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Mystynzl profile image
Mystynzl
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15 Replies
MaryF profile image
MaryFAdministrator

Hi there, I hope you get a check up with the GP... I have days like this, sometimes there is no explanation... other times I really feel like this if going down with a virus... however and a big however here. I am only on aspirin so not fully confident in discussing INR levels and such like. I am sure others will have more detail. In the mean time... if it continues NOT to feel right, follow your instincts and get checked out by somebody you trust!. Hope you feel better soon. Mary F x

Nccarolina profile image
Nccarolina in reply to MaryF

Hey, I get this,too. Had it onThursday. I feel drugged and can't wake up feeling. I usually go get tea that has caffein- that helps wake me up a little. That maybe explains why my son sleeps a lot & is hard to wake up.

Mystynzl profile image
Mystynzl

Thanks Mary...will see my GP in the morning. I have never had symptoms like this before. If i have any issues over night i will head to hospital.....this symptom worries me as it is new and very strange

MaryF profile image
MaryFAdministrator in reply to Mystynzl

Yes. sit with it a little... and if this continues, do go to hospital, do you have somebody to come with you etc etc! I hope it is just the usual brain fog or fatigue.. but best to be on the safe side! M x

Dani71 profile image
Dani71

Hi, you poor thing. It's such a horrible feeling. I often feel like this & it seems to just come from nowhere but it is mostly after a really 'giddy' phase.....Sometimes I feel I have yawned so much that my jaw will break.... & that I cud sleep standing up. I try to relax for a few days, not always easy I know but I try to rest & let it pass. I am also only on aspirin so know nothing about inr etc. hope you feel better soon

Ohiorose profile image
Ohiorose in reply to Dani71

My first experience with a pulmonary embolus was tachycardia, shortness of breath and YAWNING that I couldn't stop. This was before they did the blood work and discovered I had APS. I find now that I definitely need more naps, more sleep. I fell asleep in church Sunday for the first time in my life. And we have a lively church!

GinaD profile image
GinaD

As you see, your description of the fatigue resonates with many. But I'd say you are lucky in one respect: my fatigue usually creeps up over a week so that I slowly fall into a regime of constant napping and tiredness. This makes it hard for me to identify when that autoimmune chronic bone-deep fatigue has set in. Only when I begin to climb out of the funk do I realize I have, once again, been in a Hughes Fatigue Funk. So if your funk has sudden onset, that increases the chance you will be able to identify a trigger and a solution. A virus because you inhaled at the wrong moment on the bus? A food you don't realize you are sensitive to? Aggravated stress at work or home? (Yoga helps, or just time with Bach on a good head set.) Good luck. And (my Hughes/ APLS slogan: "That which does not kill me gives me more information about how to deal with this."

Mystynzl profile image
Mystynzl

Doctor seems to think i had a tia and just ignored the symptoms. Off for a carotid artery.doplar on thursday ad he feels there may be an issue or a blockage. Still feel under the weather....thanks all

jetjetjet profile image
jetjetjet

myst--- i was just dia. with cronic fatigue ., and had to have sleep study done, obstructed sleep apnea- i guess i stopped breathing way to many times for their liking and my oxygen levels plummited to 80 s and a couple of times went even lower . but your discriptions sound all to familliar with me- be interested to see what they tell you ???----------------------------- snoozy jet

Mystynzl profile image
Mystynzl

Thanks Jet....i have just had my inr results tooo...supposed to be 3-4... currently at 2.5...have been sub theraputic for 3 weeks now...so chances are its a TIA.....still feel tired but not as bad

Cinn987 profile image
Cinn987

Get it all the time... for years now... I get through it and try to pace myself a little better. Inr in range so just thought it's the APS

Lure2 profile image
Lure2 in reply to Cinn987

I know you did parallelltesting (side by side-testing) for some time. How was the difference between the vein- and the fingerprick-value? What INR has your Specialist put you on or is it a GP who is responsible for your anticoagulation? You say your INR is in range. Do you selftest ?

You said your INR was erratic and you could not take a bloodtest as you are on Warfarin but thought you had Lupus Anticoagulant positive.

Mystynzl profile image
Mystynzl

Hi everyone. It's been a while. I posted this 7yrs ago.

Update . It was a TIA

Since then I have been diagnosed with Hashimotos Disease..lupus...fibromyalgia....and was recently tested for Parkinson's. I am waiting for the results.

Since this post I have been taken off warfarin as I was getting a allergic reaction ..seizures. I am currently on 280mg of clexane daily.

I have had 3 Pulmonary embolisms. 2 TIAs....I have also had a stroke. Since I was first diagnosed I have had over 60 blood clots. In 2017 I had a heart attack and I am now being treated for atrial fibrillation.

The are now calling my condition catastrophic and more than likely terminal. I have been told that nothing seems to be working to dissolve the clots. I currently have a clot in my left leg that caused the radiographer to say WTF. The clot starts in my ankle and finishes in my abdomen.

I am tested for Anti 10A levels monthly and I see my specialist monthly.

I also have a revolving door in the ICU....Lol. But apart from that I am great.

Wittycjt profile image
Wittycjt in reply to Mystynzl

Well seems the only way for you is to get better, At least not to develop any more clots. Stay medicated, hydrated, stay the course, i hope things turn around. Best wishes, Cindy

Mystynzl profile image
Mystynzl in reply to Wittycjt

Thanks Cindy. I am pretty optimistic. I have the occasional down day. But I bounce back

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