A little advice please

[Lou-876]

Been out walking the dog & it’s around 21 degrees in Durham. About an hour after I get back I’ve come out in a cold sweat & I feel shaky & legs like jelly. I have discoid Lupus & I’ve been waiting since March for my Lupus antibody test but my doctors aren’t doing bloods yet so I have to keep ringing the surgery to see when it’s ok to have them. So I still don’t know if I have Lupus itself. I have many symptoms of it like Fatigue the facial rash Raynauds etc.... I’ve had tietze/ costrochondral syndrome since I was 18 & basically just learned to cope with it but it’s excruciating sometimes.

Has anyone else had the cold sweats & the jelly legs as I’m feeling pretty awful at the minute.

[Spanielmadlady]

Hi I have sle.when I go out with my 2 and I walk too far I can feel awful.cold sweat,jelly legs and nausea.now when I feel like that when I get home I make a cup of tea and a biscuit and rest after about an hr it eases but can leaving me feeling tired.i dont know why it happens...if it's a drop in bp or blood sugar 🤷‍♀️ sorry I cant be more help xx

[Lou-876 in reply to Spanielmadlady]

That’s how I felt... the inflammation in my chest is really bad at the minute so I’m trying to relax. I’ve had these symptoms since I was 18 ... I’m 43 now so I’m hoping after these blood test it gives me some answers ..

thanks for your reply much appreciated xx

[Spanielmadlady in reply to Lou-876]

If that's the case you oxygen levels might be dropping ...do tou have an oximeter.the lupus has damaged my lungs so I have breathing and inflammation issues too.i hope you get bloods done and some answers soon.

P.s do you wear a hat when you are out.? Kind regards xx

[Lou-876 in reply to Spanielmadlady]

No I don’t have oximeter I’ll look into that ...

I do wear a hat in the sun , i have discoid Lupus & it gave me scarring alopecia so I lost some of my hair so I must be careful in the sun. That’s been so helpful thank you so much xx

[PMRpro]

Are you sure it isn't simply you have overdone it?

I used to live in Fram and then Pity Me - not sure I ever remember 21C!!!!!! With all its hills ...

[Lou-876 in reply to PMRpro]

Lol it definitely said 21c in Coxhoe.... I was only out for 15 mins had to come back as I felt terrible..

[MEGS53 in reply to PMRpro]

......it's climate change!!!

[PMRpro in reply to MEGS53]

Must be! I have never lived anywhere as cold as Durham!

[Lou-876 in reply to PMRpro]

You get used to it ... 21c is a scorcher for us lol 😂

[PMRpro in reply to Lou-876]

I didn't get acclimatised in 10 years!!!! Scotland had been so much warmer!

[MEGS53 in reply to PMRpro]

Ah, we live in a little town on the Northumberland coast - much colder winds here. Durham is positively balmy at times!!!

[PMRpro in reply to MEGS53]

I can believe it - but we were on the top of the hill not down near the river so more exposed.

[MEGS53 in reply to PMRpro]

I know where you mean, no wonder you moved to Italy!

[Beautifulwoman]

Jelly legs, cold sweat, blurred vision, and dizziness. I definitely go through all of these things when I walk too far. No matter the temp. By the way, I have SLE. People dont seem to understand. Went in a university tour with my daughter and hubby and nearly passed out. We were on a group tour of about ten people. All of the above symptoms hit me like a truck. The entire group had to stop because of me. So embarrassing. Especially being drenched in sweat on a 68 degree Fahrenheit day. The sun definitely played a part, as it was directly in front of the tour at the time.

[Lou-876 in reply to Beautifulwoman]

Thanks for the reply.... knowing other people have experienced similar things makes me feel like I’m not alone . I’m still waiting for my Lupus blood tests but just wish I had some answers as to why I feel so bad a lot of the time. I was taking hydroxychloriquine for my discoid Lupus but no longer take that.

Thanks so much for your response helps massively x

[MEGS53 in reply to Beautifulwoman]

I get the same - it is embarrassing! I don't know what causes it either, but I suspect a sharp drop in blood glucose or maybe autonomic nervous system disfunction??

[alice_sportyauthor]

I never found it to be blood sugar drop, because the biscuit didn’t make me feel better, the rest did.

In Sheffield they have set up an outside blood testing facility you drive through and either a hospital Dr or GP can send you.

I don’t get that so much now I have medication.

Don’t give up on the walks, do what you can, when you can. Look for some gentle yoga stretching on you tube and do what you can. I found movement seemed to keep my joints oiled and made me feel better in the long term although it didn’t always feel like it at the time!

[Lou-876 in reply to alice_sportyauthor]

Thanks for that ... it’s happened a few times now . Been waiting since March to have my bloods done , fingers crossed I can get them done soon x

[daniel55]

Is your sugar level dropping too low it sounds very similar to a hypoglycaemic attack. Try eating something sweet if i feel like this i eat some chocolate or a few biscuits it takes a while to feel better. Also make sure your drinking plenty as you have been out walking the dog in fairly warm conditions. Good luck.

[Lou-876 in reply to daniel55]

Many thanks for your reply, I’ll keep an eye on my sugar levels . Not a good feeling when it happens so hopefully I don’t have to many of them x

[daniel55]

Don't walk your dog to far come home and make it a half hour treat/rest put your feet up get yourself a hot drink something nice to eat watch tv and make a fuss of the dog!