Shaking

[Lucyllama]

Does anyone experience shaking. Mine happen at night. I wake up freezing and have to put layers on. Then sweating. When I do go to sleep I always wake up with a really bad head and legs. Is this part of a lupus flare.

[Bmagrl]

Hi!

I'm sorry to hear you're having troubles! I have had a horrible time trying to sleep at night but can't bc I can't get and stay warm. I end up shaking like I have chills (like you would get with a fever). I'm talking about so cold that I will have an electric blanket as high as it will go as well as two other quilts and I'm so cold that I can't fall asleep. My husband will be at the other side of the bed with just a thin sheet so I know it's not cold in the room. Once I fall asleep I have woken back up and be sweating.

My Rheumatologist said this can run along with Lupus and can come from many things such as Sjorgen's disease, bad circulation, nerve problems, etc... However, the last time he and I spoke of it he thought it sounded like Hypothyroidism or Hashimoto's. Your thyroid helps control your body temp (as well as a ton of other stuff) and if it's not working properly your entire system can be affected.

Again, that's just a suggestion for you. Anyone with Lupus can tell you that symptoms can come and go and sometimes it's hard to figure out what to blame.

I hope this helps in some way

[Lucyllama in reply to Bmagrl]

Thank you for your reply. I've just been tested for thyroid that's come back clear. So I will check the other symptoms out. It's happened a few times recently. I just generally ache all over and whatever I take it won't go. This has been going on a week now but the shaking stopped after about half an hour, leaving me with all the aches and pains.

[whisperit]

Yes, I had a sudden onset of severe shaking episodes after being on hydroxychloroquine and steroids for about 6 months. It went along with sweating and nausea and was so bad I got admitted to hospital. They found nothing to explain it, but it persisted for another 6 months or so. Over the last 6 months, it has gradually got less severe. My thyroid tests show elevated anti-thyroid antibodies and TSH, but normal thyroxine, so I'm told this is not the explanation. I have queried whether it could relate to adrenal function and did a postal kit test, which showed some depression of cortisol production. I've recently had a synacthen test to look at this further.

My suspicion is that the underlying condition and/or the meds have caused a general dysregulation of my hormone cycles - I've also developed chronic insomnia and fatigue, which I think is part of the same process.

Sorry that I can't offer brilliant insights or solutions. Please let me know if you have any! x

[Lucyllama in reply to whisperit]

Not a nice thing to go through at all. I don't take any medication as I'm allergic to everything they give me. Hopefully more tests and see what happens next.

[imsickandtired]

That's the way a flare usually starts for me.

[Lucyllama]

Is there any more you can add to that please. Up until now it just has been shaking and cold, but this has been terrible. Completely floord me

[Hidden in reply to Lucyllama]

I have recently had very a similar symptom. But I think mine is actually a longstanding tremor that I hadn’t really even clocked as a tremor until it took on quake proportions. In my case it seemed to arrive in the run up to a cold virus and gathered momentum as a flare took over. It finally ended when I got put on antibiotics for a kidney infection - having been taken off my fifth immunesupppressant and started on a betablocker.

What I can tell you is that I have primary Sjögren’s with shades of RA, Lupus and Scleroderma. A dominant feature of my Sjögren’s is a very widespread small fibre neuropathy. I ended up phoning a brain and spine foundation neuro nurse on a helpline to ask about Parkinson’s. She said that some other underlying conditions can cause Parkinsonism rather than the disease itself. To hers mine sounded like Parkinsonism secondary to a Sjögren’s flare up. This made complete sense to me.

It wasn’t low blood sugar as I wondered and it does relate to my autonomic nervous system and vagus nerve I believe. I say this because I’m on a new constipation med and I notice that after taking it the quiver begins to become more prominent in my guts and groin. I am sure the new med isn’t causing it and helps me greatly - but I do know from a gastro that the vagus nerve regulates our autonomic nervous system and is the very large nerve that connects our brain/ pituitary function with our gut. I’ve stopped fretting so much about it now I’m understanding it more. I also suffer from attacks of Vasovagal syncope and Raynaud’s when I’m flaring/ extra anxious.

It floored me too as my recent posts here will testify!

[Lucyllama in reply to Hidden]

I to suffer with snyncope. The diesese is so different for so many people. Thanks for your reply