Shaking

[Tiamaria1951]

Does anyone out there get the feeling that their body is shaking inside, it is a horrible feeling.

[Olibop]

Yes I do frequently it is a horrible feeling told my doctor but don't know what it is xxx

[Tiamaria1951 in reply to Olibop]

A relief to know I am not the only one, thanks.

[Petrof in reply to Olibop]

Yes, I get this feeling too sometimes. My rheumatologist said that it may be one of the symptoms of a viral infection. It goes away when I feel better.

[willowwag]

Hi therd i live with this on a daily basis you can even see me shaking if im more active the skaking gets worse, i ask my consultant about this and my lupus team and consultant said thats its because of steriods, stdriods can make people shake inside out and can visably shake also...sometimes my shakes feel like im on one of those vibration plates you see in a gym..hope this helps.

[EOLHPC]

I've been living with my version of shaking since the mid '80s when I had my first really bad flare of what apparently are neuro cerebral symptoms. At the time I was in my 30s and my USA diagnosed infant inset lupus hadn't been recognised by the nhs (my mother had never told me about the early diagnoses...I thought my illness was just "normal". So, my internal shaking wasn't down to taking meds of any kind)

I don't know your lupus story or treatment plan, but perhaps my story can be useful in some way:

Over the decades, my drs, including neurologists & neurosurgeons, & ENT consultants told me there was nothing "sinister" wrong with me...just hypermobility, spondylosis and arthritis (haha...typical of lupus, right?) which I learned to live with & lifestyle manage. The shaking (I call it internal tremors) and the other NC symptoms that accompany it responded well enough to mindfulness-type meditation & attitudes, but carefully pacing my activity & getting max amount of sleep possible helped most. I did conscientiously try various complimentary therapies...the Alexander technique was the most beneficial & I still practice this today. I did take prescription NSAIDs & analgesics for my spine in the '90s and these meds did seem to aggravate my "tremors", so much so that even my lower arms & hands began to visibly shake...my voice quavers & goes hoarser. But my drs shrugged their shoulders. It was in 1998 that I finally gave in to my overall debilitation & took early redundancy

Finally 4+ years ago a brilliant rheumatologist recognised my lupus & started treatment. After 2 years on daily hydroxy, we discovered that low dose prednisolone tapers could damp down my NC symptoms. So last jan we added daily myco to my treatment plan, which helped even more than pred. Now I take a pred taper only when my NC symptoms flare badly and persistently, which happens if I have done too much too fast...or if I'm in a flare of my other lupus related problems, including infections.

As I type this, my version of internal shaking is at about 2-3/10. I live with it 24/7. But it doesn't cause anxiety now I know myco & pred can damp it down when it flares along with my other chronic NC symptoms. I'm waiting for my drs to decide I need neurological tests. But as long as I can manage this complex of my lupus-related symptoms, I'm more comfortable avoiding further tests & examinations....I've had too much of that stuff in my 61 years already!!!!

Wishing you as well as poss

XO

[MargaretGail]

YES! I call it shaking in my own skin and I don't need to be on steroids to do it.

[EOLHPC in reply to MargaretGail]

GRRREAT description, margaretgail!

[MargaretGail]

I used to think it was because of the wine then when I had to give it up and I was still shaking

[EOLHPC in reply to MargaretGail]

Brilliant!

I usually think it feels like a constant earthquake!

[Csrdayw61]

Yes i have experienced it and you cannot control it. It could be a side effect of a medication

[bestbuddy]

I only have a diagnosis of UCTD and not a definitive diagnosis of lupus but I have hypothyroidism and I am coeliac but I also get internal tremors....rather like I have my own mini generator goining on inside.

At its worst is usually when I am in so much pain I am worn out with not sleeping. This is when I know for sure I need some intervention, I listen to my body and stop.

I never knew anybody else suffered with this symptom...I just thought it was one of my crazy symptoms.

The nearest I go to describing it to my husband is like the open freezers in supermarkets...try leaning on one of them when getting food out...if you are by the compressor then that's how it feels!

[strawberryshortcake]

Yes I get the shakes, nothing to do with medication. Makes me fumble with things. I feel like a 5 year old child trying to do grown up things. Nightmare wrapping Christmas presents.

[tennissenior]

I've had my leg and arm "shaking" involuntarily several times. It's just another "symptom" of that wonderful disease called SLE! It sucks doesn't it? How do you explain to people when your fingers and toes get numb and turn purple and white and you can't raise a glass? Or touch anything? Who can understand SLE or Raynaud's or why I have a red mark on my face that looks like there was never skin covering the bone? Only people like us understand. Every time I present with a new symptom to my doctors I get the same response - "It's Lupus." Thanks Doc! Why not just say "It's HOPELESS?" I gave up waiting for a "cure." I truly believe it will never happen....this is what we've been dealt.

[Doomer in reply to tennissenior]

Me too I have SLE RASH ON FACE FOR 5 YEARS NOW I'M MISERABLE ..NO ONE UNDERSTANDS HOW BAD WE FEEL HOW TIRED HOW SOOO TIRED HOW ACHY AN THAT INTERNAL SHAKING IS HORRIBLE NOTHING NOTHING HELPS I TAKE ADAVAN IT TAKES A EDGE OFF BUT STILL THERE.... I WAKE UP AN SADLY ,I CAN'T WAIT TO GO TO BED ...THE WORLD AS I SEE IT IS MOVING AN I HAVE STOPPED , I'M SO JEALOUS OF EVERYONE S ENERGY PLANS AN HEALTH , WHAT A MISERABLE DIGNOISE LUPUS... EVERYTHING thaT GOES WRONG DOCS SAY ,, "YES THAT'S PART OF THE LUPUS .... WE ARE WRITTEN OFF AN I AM SO SAD ALL THE TIME AN SO DARK INSIDE ME ......I CRY ONLY ALONE MY HUSBAND DON'T UNDERSTAND I'M WORTHLESS TO HIM ,TO EVERYONE, WHAT A HELL THIS IS I COULD GO ON AN ON BUT WHAT GOOD IS IT GUNNA DO NOONE CAN CHANGE THIS 😳

[Hidden]

I have this too, like butterflies or a coffee overdose. I used to have it before diagnosis and medication too.

[mcjm]

I also get this, it is like a tingling nerve inside me sometimes. It really scares me as to why it is happening.

[loopy-lou]

I also get this mainly when in bed at night. My version again is "earthquake" style of continual internal shaking of my entire body. I have never mentioned it as I thought perhaps it was stressed related dealing with lupus etc...it sounds like another symptom some of us get.

[alison11mt]

Yes, I get that. It's often the first indicator I am getting a flare up and if I don't act on it there is a progression to full rigours, my temperature goes potty and I get acute flu like symptoms within a few hours.

[Marley]

I have experienced something similar during a recent flare. I described it as fizzing inside, rather than shaking. Maybe I had had a version!

[Tiamaria1951]

Thanks everybody, feel much better about my internal shaking now.it is so helpful knowing you are not alone. :))