Mumsnet hasn't checked the qualifications of anyone posting here. If you have medical concerns, please seek medical attention; if you think your problem could be acute, do so immediately. Even qualified doctors can't diagnose over the internet, so do bear that in mind when seeking or giving advice.
Mumsnet hasn't checked the qualifications of anyone posting here. If you have medical concerns, please seek medical attention; if you think your problem could be acute, do so immediately. Even qualified doctors can't diagnose over the internet, so do bear that in mind when seeking or giving advice.
Autoimmune disease
Coronavirus and Sjogrens/Autoimmune disease/epilepsy
SjogrensCVQuestion · 17/03/2020 10:45
I realise this is slightly niche but has anyone had any experience, or has any advice, with CV and Sjögrens disease or epilepsy?
I have Sjogrens as part of mixed connective tissue disease. I've had a couple of bouts of pleurisy in the last year and have just got over a chest infection.
Yesterday I started with an awful cough (like when a drink goes down the wrong way and you can't stop, quite scary) which hasn't really stopped and my temperature is 100.4. I feel like shit. The cough is making me catch my breath and then my head thuds. My joints are so painful, but they usually hurt anyway! We are all self isolating now of course.
I'm worrying that my family will catch it, I'm worried that our house seems to have shrunk 
, I'm worried that my teens will eat all the food in the house within a day 
but I'm also worried about my lungs, especially the wait times for 111 if my breathlessness deteriorates.
I don't really see the point in ringing the rheumatology helpline as there doesn't seem to be anything that can be done (I'm not on immune suppressants at the moment and have lots of painkillers etc).
To add to my worries, I have epilepsy (tonic clonic waking seizures) and fret about a seizure from lack of sleep/temperature, especially as DH is sleeping separately. I do have a care plan for this scenario though and my GP will change my meds.
Does anyone have any wise advice or similar experience? I also feel for everyone in the same boat, it is a very scary and stressful time. I hope we are all keeping well and not going stir crazy if isolating (I also really feel for those with younger children to entertain!)
(Please MN don't move this to the CV topic as I think more people here will have experience)
ispepsiokay · 17/03/2020 10:50
Following, I have temporal lobe epilepsy and some form of auto immune/connective tissue disorder (diagnosed but cannot narrow down to one specific diagnosis) and I'm worried about what will happen if I catch the virus
SjogrensCVQuestion · 17/03/2020 11:00
Gosh, we sound as though we are in very similar boats! It's scary isn't it.
BackseatCookers · 17/03/2020 15:30
Sorry you are also struggling and worried with all this going on. I posted elsewhere on here this morning with similar concerns, just posting here too in case anyone has any thoughts.
Seizures are bastards aren't they when you have epilepsy because sometimes they're indicative of something more serious and sometimes it's 'just' one of my regular seizures. Anyway - here's my last few days:
So the last two nights I've had a real shortness of breath - unable to catch a deep one at all - but it's seemed to be around bedtime rather than today when I've woken up like it. Along with the stitch feeling getting worse.
On Sunday night I fainted and then had a seizure, BUT I have epilepsy and fairly regularly seizures so this in itself isn't indicative of much.
Because of my epilepsy and some other health stuff I think I have the opposite of health anxiety as I'm quite used to feeling like shit, so it's hard for me to know when to worry.
I work for myself and from home so self isolating isn't an issue, it just means I would need to prepare for getting more poorly in case more symptoms come and I am unable to work or look after myself very well.
The main issue is that I live with someone else so that's something i need to tackle too - I only say that's a main issue because I'm usually unable to stay alone in case of seizures.
No temperature or cough at all though.
No idea what to do really. Ugh.
SjogrensCVQuestion · 17/03/2020 17:07
That sounds very scary backseat. I think if you have breathing problems maybe you should treat it as suspected CV but I am no medical expert! I'd suggest calling 111 (if you can get through) but I know what you mean about the opposite of health anxiety. I am the worst with not wanting to go to A and E with injuries
Do you mind me asking how frequent your seizures usually are? I'm desperately trying to get to twelve months free and get my driving licence back (waking seizures only) so am terrified of having one atm. The sleeping alone is also scaring me. DH will do whatever I want and sleep in the room with me but I feel so ill I don't want to risk him getting it.
BackseatCookers · 17/03/2020 18:08
You poor thing @SjogrensCVQuestion if you're anything like me it's already horrible feeling a bit guilty a lot of the time already when you have a chronic illness and your other half is lovely about it, bless them!
I've only had epilepsy for two years following a pretty catastrophic car crash so I'm still very new to it all and it's changing frequently as my medication is tweaked on an ongoing basis.
Have steadily had about two tonic clonics a month for a little while, mainly sleeping ones (scarier for my other half more than me I sometimes think) still every other night or so and then myoclonic / absences most days. As I say hopefully that will settle as we trial and error with my meds.
I haven't ever fainted before a fit before and I have never had this pain. You know what it's like doing anything possible to resist going to A&E as they always do obvs, make you lie under lights brighter than the sun and then send you home after waiting 8 hours feeling guilty for taking up a bed.
I feel I'm more likely to get it (if I haven't already) in hospital and more likely to spread it in hospital than self isolating.
Bloody hell, it all feels like a film at the moment doesnt it.
Poor you trying to get to 12 months - if you're getting anywhere close it must be so upsetting when it's snatched away from you again. I obviously can't drive any more (who knows in future) and I've been shocked at how isolating it feels when you've been used to doing so, and the level of loss of independence I feel.
Sorry for my super long post, don't mean to bang on about myself 😬
SjogrensCVQuestion · 18/03/2020 06:46
Backstreet funnily enough mine was adult onset too and out of the blue, so I have really struggled with stopping driving. Plus the effects on my memory/brain. It seems like there is (hard to explain properly!) a before and an after in that part of my life. I have the same feeling now with the CV crisis, that lives/lifestyles are changing. We took stuff for granted (clearly I didn't learn my lesson well enough first time round 
)
It's hard for me to articulate properly (my working memory is a bit fucked too so I can't think of the words!)
To comment on this thread you need to create a Mumsnet account.