Sticky Blood-Hughes Syndrome Support
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Tremors........ Great I get uncontrolable shakes

I have started to get tremors which I find hard to control this is even when I'm relaxed and not stressed, I was wondering if any one else suffers with tremors, the Doctor asked me if there was Parkinsons in the family and did more tests to rule out other conditions.

Moan over hope you all had a good Easter Hols.........

11 Replies

Hi Frank,

I too often tremor / hands shake, I did earlier, but as I said in my post ( accident )...I hav'nt been well recently too.

But I do often find I do it more when out & about & doing stuff rather than if I'm resting...

I'm pretty sure I've heard it mentioned by quite a few on these sites.

Hope you too had a nice Easter, Sue.


Welcome Frank, yes shakes here as well i find like suzy if i have done more it gets worse and more sharper shakes. i get it mainly in my hands and arms.




Hi Frank....

I have the shakes in my hands and fingers...looks like I am a stressed nervous wreck as I shake like a leaf.

I have to believe it is connected to it just popped out of nowhere a couple months ago for me.

Take care,



I had an episode of the shakes the other night and went to AE feeling crap and hard to think and they just fobbed me off as being over anxious. Was shaking like a leaf and couldn't stop.

My INR was too low.

I also went to A&E another time with really bad twitching, again my INR was too low but they were more concerned about my headache than the twitching.

None of them will accept that an INR too low will have an affect on how we feel and what symptoms we get.


Hi Frank,

I too get the shakes in the hands and lower arms. Last Wednesday I had a bad attack and this time it affected my right leg as well.

According to my Rheumy, it is because of my Vasulitis. But who knows for sure.


Hi, Frank.

My daughter has episodes of these tremors, and they can be quite violent but thankfully short in duration.

They occur when she's overdone things or stressed and start in her lower limbs and then take over her whole body, much like an epileptic type seizure.

Afterwards, she usually has a bad headache / migraine and is unable to communicate properly as it takes all her concentration just to keep breathing.

I'm glad yours are not like my daughters.

Wayne L


My physician Father had tremors. He also (in hind sight) probably had Hughes Syndrome. He had "almost lupus" as he described it. On a visit once he showed me his tremors and said it is important to distinguish "intentional tremors" from "unintentional tremors."

So, do the tremors --- say in your arm-- begin when you, say, extend your arm to pick up something? (Intentional tremors) Or do they start when your arm is at rest and go away when you extend your arm? (Unintentional)

He had unintentional tremors, which he said, meant it was not Parkinsons. He never knew what was causing his tremors, but after reading this I wonder if they were another symptom of as-yet-undescribed Hughes Syndrome. (He also had many DVTs in his youth and a profound sun intolerance. He took a lot of asprin because he told me, they made him feel better.)


I have had tremors for about 6 months now, it can happen at any time & I cant control it, Dr thinks it may be caused by some of the meds I take, not very encouraging


Hi there, I have had tremors for years, before I was diagnosed with SLE/APS, Was given propanalol for this. Always assumed I had inherited it from my mum as she has an essential tremor. Hers is a lot worse than mine though.


Wierd not had any for a while....& today I have just had a long attack of the shakes & feeling sick at the same time!

I asumed tho' mine could have been down to a really bad pain I've had in my head since last night? I asumed it may be a migraine? still struggling now...cant seem to shift it, I've taken some Sumatriptans, zomigs & just tramadol? nothing is working.....wondering if its down the the knock I had instead & thats why the migraine tabs' are not working?


Hi To All

Thank you so much for your replies, I can see how similar our symptoms can be and how the condition varies for each of us, this also has help me to not worry about the shakes, I did have a moment while shopping and some people seem to laugh at me...... Oh well, all my care now is in St Thomas with the Neurologist there, hopefully I will be able to get some answers.

I Am so glad of this website to chat.....


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