The funny and dark side of lupus #1

I wasn't sure where to put this post.... I dont ask questions and I very very rarely give advise as there are many well qualified and more knowledgeable people here than me.

Ýou all know how I write, honest, open and sometimes emotionally but never without passion, laughter and a hint of distain for so called professionals. You guys though, I have the utmost respect could really use some help.

I had such a strange, terrifying and worrying experience last night, that it has left me feeling worried, vunerable and frankly **** scared.

It started with one of my usual, milder costro attacts, itvleft ne unusally tired, which resulted in me retiring to bed early and missing Adele at Glastonbury.....very pi.....ed off bunny..πŸ˜•.

I fell asleep to my meditation music, only to be jolted awake with severe pins and needles all over my lower and upper body, as it spasamed with its usual evening/night pain......

The difference this time was.....I could not move..... seriously, my mind was wide awake (yes, I know you find that hard to believe I was awake.. but no matter how hard I tried, I could not move.

I have no idea how long this lasted, it seemed like an hour or so, each time I told my body to move, it wouldn't... I was struggling to breath, finding it hard to swallow and frankly thought I was having a heart attack instead of a costro attack. I WAS PETRIFIED....nothing was working from my neck down, my eyes, ears and mind seemed fine, but the rest if me was another matter.....

When it finally passed, it was still dark outside and when I tried to stand, I promptly fell and it took a further 3 hours for all my facalties to return, the pain to subside and my mind to become clear again (thats not easiy in normal circumstances! ).....I had no loss of speech or vision after but have struggled all day to function at my normal, for me, level.

It has left me exhausted, with a roaring headache, scared and worried. This has never happened despite night sweats and nightmares and all the other things lupus throws at you when you try to sleep........

What was this.....Anyone know or experienced this

ANY HELP AT ALL - please, it would be greatly appreciated. Thanking you in advance.

Mandy. Xx

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  • Mandy, this is seriously scary....the experience you're describing sounds somewhat more extreme than my version of this...even so, my version of this was vvv scary. I've only had this 2x...that was enough!

    My versions of being 'locked in' from below my head happened in bed when I was lying flat on my back & waking up in the morning. I felt exactly as you've described: Frozen & petrified: great description!

    When my body below the head finely came to, I crawled to the loo sweating & feeling the chills nearly fainting where I did a lot of throwing up & immediately upon regaining the power of movement I had a severe multisystem reaction...and for days afterwards I felt like a truck had hit me side on: spine in spasm, bruised down one side of body, groggy and sleepy, headache, etc

    the complexities of your stuff mean my impulse is to urge you to flag this up to your GP (or whoever you flag things up to) tomorrow first thing. My understanding is that there can be many causes of this sort if thing, some more benign than others. The fact you're as relatively 'together' as you are after this is maybe positive, but when this happened to me, my family took me straight to A&E to be checked over. The only thing they found was the severe malformation in my cervical spine...this was not long before I was referred to neurology for MS investigations

    Last year asked a top neurologist lupus expert who was speaking at an event I attended about this....I wondered if they were strokes...he said a qualified no...and looked v unwilling to comment

    I'll be v interested in the replies that come in

    And I hope you get this checked oit...please let us know


  • Thank you, I will. X

  • This sounds very horrible and scary but it does remind me very much of something I have experienced albeit luckily not recently. Have you considered the fact that this could be sleep paralysis? What made me think this is the fact that you said that you had gone to sleep and then woke up. This is what used to happen to me and my eyes would be open and I was aware of sensations of my body but just couldn't move, apart from moving my eyes round I think from memory. It used to leave me feeling like a complete zombie afterwards when I would eventually manage to wake up completely. I think sleep disorders do occur alongside SLE - now I have problems with sleep maintenance. Have a look at the symptoms for sleep paralysis to see if this might fit but if it keeps happening, I would definitely go and see your doctor just to get it checked out and see if there's anything they can do.

  • Thank you, will look up now. X

  • Oh Mandy!

    Now you have me worrying about you😯

    Please get that checked out by one or more (oops Auto correct made that moron but hek maybe it knows a Gp or medicπŸ˜‰) of those medically involved.

    I've read the replies and wonder if you were flat on your back because exactly the same as you and barnclown I had similar when sleeping on my back.

    I had a few tests as it was thought mini stroke,cardiac or spinal but never found out but remember I was too spooked to sleep lying down for weeks after.I still prop myself slightly to one side so as not to lie completely flat just in case .

    I know my natural instinct is to stay away from hospital but I think you would be best to give them a visit to find answers to prevent reoccurring.

    Please look after yourself as you're very much appreciated and cared for here xx

  • Thank you for your kind words, it is much appriciated. Unfortunately, I was on my right side as I am unable to sleep on left due to front kidney transplant and nor on back because so uncomfortable. I have to have a very stiff pillow, with bed slightly raised or breathing and posture.

    Will see if it happens again thank you again.


  • Mandy this is terrible . I'm so glad others can give you some insight and comfort, I can't but I had tingles myself just reading your account of what seems the most terrifying experience . All sorts jumped into my mind Guillian- Barre syndrome ... and others. You suffer so much and give so much and it seems you don't receive enough from your medicos.

    I wouldn't like to think you'd wait for another episode...will you see your doctor and describe it?

    Bless your passion and sense of humour

    Gentle hugs



  • Do take care. I've experienced sleep paralysis, but only in the having a nightmare sense. This sounds more than that. I can only add that you really must get this checked x

  • I've had this a couple of times and it is utterly terrifying because you feel awake and conscious but you can't move. It is an awful experience but it is just one of those things. Hopefully you never have to experience again!

    Friars xx

  • Thank you all for you concern, help and advise.

    Unfortunately it happened again last night and I have made an appointment with my local gp for tomorrow.

    I will, of course let you all know the results ax I get them.

    Thank you agsin and to reassure you all, I am ok (ish), i really did not do alot today but made something for a cornish family wedding on Saturday........( see latest # post....) still trying to keep going.

    Much love, many hugs and grateful thanks

    Mandy. Xx

  • Mandy;

    I have no ideal what you experienced. I can not give you any suggestions other than you may want to see your doctor. I have never had anything like this. I do hope you keep us updated so. If any of us has this same issue, we might have a head start on solving it.

    More than anything, just let you know we are here to support you. I hope you get better and find answers soon!



    "The Barefoot Gardener"


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