So for the past week I've struggled with exhaustion on a scale I've never experienced before. Yesterday and today the pain in my whole boss is unreal now I feel so sick. Could it be the weather or infection or a really bad flair up
Weather or not: So for the past week I've struggled... - LUPUS UK
Weather or not
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Kat-
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Hi Kat....all I can do is relay to you my experiences.when ever the weather improves and theres more sunshine I ache something terrible especially my hands and feet I also get a headache after about 30 mins outside and my eyes burn.i cover up and wear a hat and I've also just put up a gazebo so i can have some more shade and enjoy my outside space abit more.as I have lupus and take azithromycin I suspect I am now photo sensitive.my breathing has been worse over the last 2 days and I've needed extra meds but I know thats the heat.on the upside when the weather changes to cooler/cloudy or wet and I'm indoors the aches and pains go after a couple of days.if this is the first time you've felt like this I'd give it a few days once it goes cooler if no better contact gp if it all ease you might want to look into photo sensitivity.hope your aches and pains ease soon xx
Hi thanks for the reply. I've been bad before but not this bad or for this long. I'll see how I get on over the weekend. I definitely can't sit out in this heat my other half is putting the gazebo up at the weekend xx
When I know the weather is going to be like this I know these will be do nothing days.ive made my gazebo into a nice relaxing space for myself I've arranged some plant pots around the outside to help hide the weights,I repainted my garden furniture hung some solar lights and dotted around some garden ornaments.ive enjoyed sitting there the last 2 days.ive had times where I dont know where to put myself or I've sat with my hands on a pillow.never thought I'd ever say this....but I'm more comfortable cold then hot ! Oh the Joy's .. ...😘
I know exactly what you mean I'd rather be cold can't deal with this heat xx
I used to describe myself as a greenhouse plant.....I'd soak up heat like a sponge but not now.granted I'm menopause age but I hate the way the sun and heat makes me feel last warm spell we had I was sat with cotton wool pads soaked in cold water to try to ease the burn in my eyes.i have eye drops and reaction lens in my glasses.the weather forecast did say UV levels were very high so that could be why we are feeling worse this time around x
Possibly I always loved the sun and warmth made me feel better. Spain in January was amazing. I'm just not use to this much heat 30c in Scotland can't remember it ever being this hot xx
I'm Cumbrian coast so it's a rare thing here too.....we hit 29 degs today 🥵
I'd rather have all year spring can't be doing with sweltering heat. Can't eat but have to so I can take my pills hate feeling nauseous it's a nightmare xx
18 degrees cloudy dry and calm suits me nicely.oh pills it would be so nice to have a day without pills.i take about 25 a day as many as 40 during a flare with increased steroids and antibiotics.how do you fill your time? I cant work now as the lupus has damaged my lungs .I still have 1 at home my eldest has her own family.lockdown has been a breeze for me as i knit,crochet and do a little bit of sewing so I'm always making something as I have 2 grandchildren.my two hooligans in the guise of spaniels keep me moving although we cant walk as far now as they are both seniors x
That sounds like the perfect weather. I'm on 15 a day at the moment should be 25 but I can't take all the pain killers I end up zonked. I'm still working starting college in August or at least that is the plan. I have a daughter she's 21 lives with her bf she's an absolute god send she picked me up some shopping today as I couldn't drive let alone walk around the shops. I have a small parrot two budgies a rabbit and some fish. I make cards special picture frames just getting my sewing machine up and running to make some bags and stuff xx
You too have ways to keep occupied.i cant shop I'm shielding due to mycophenolate.my daughter is 28 in sept and is a nurse in Doncaster.shes on mat leave at the moment as she had george last yr.i have a son 16 at home his dad died in 09 in a rta so there is just the 2 of us at home now.i took up sewing again to make face masks.ive just treat myself to a new sewing machine ( happy 50th birthday in lockdown pressie) and my next project is to make some new cushions for my garden furniture x
Sounds like you've been through it. I spoke with my consultant at the beginning he said I didn't need to shield but she be on alert at that time I was a carer so being alert wasn't really possible plus I had covid 19 in march took me 6 weeks to recover but I'm definitely one of the lucky ones. We all need a treat I bought myself a new car for my 40th last year and a trip to Iceland which got cancelled due to covid xx
Yes just abit bit I take whatever gets thrown at me and carry on.i took ill 6 1/2 yrs ago after a chest infection I picked up at work on xmas day led to pleurisy in both lungs which led to heart failure and 6 bouts of pneumonia in 5 yrs.they put me in the extremely clinically vunerable group so I'm still shielding until july 31st.you have been lucky fingers crossed there are no further repercussions for you.pity about the trip to iceland hope you manage to take that trip at some point I believe it's a stunning place.well my 40th was one to forget as I had brians inquest 2 days later and was on valium so I had to make the most of this big one.i ordered afternoon tea from devon to be delivered to my daughter, my mum and us I sent bunting to them and my son in law put us on zoom and we had afternoon tea together 😀.
Yes you can't let anything beat you. That sounds amazing afternoon tea party via video link 😍. I get so frustrated I was so full of energy could do anything now I struggle getting out of bed. I've only been diagnosed but it's been 2 years in and out the hospital. My consultant started me on hydroxicloroqine but I got really unbearable side effects he doesn't want to start anything else till covid is away or they have a vaccine xx
It was abit surreal having my daughter on my tv but fun all the same and certainly one to remember I would take my son to school walk the dogs go to work come home walk the dogs go to pick up from child care come home sort tea do things around the house and if I was lucky sit down by 9pm....not now there are days where just doing the essentials is a struggle.i can walk the dogs in a morning come home and need a sleep.it took them 5 yrs to diagnose the lupus I didnt get that until 2018
I take hydroxchloroquine have done for 18 months. Been ok but at the beginning I had a bad head every day for a month.then they tried azathioprine.i managed 7 wks without issues then I started being sick 2hrs after I'd taken it.....id developed drug induced hepatitis.i had to wait 3 months for my liver to recover before they would try me on mycophenolate.had bad side effects from that I didnt lift my head off the pillow for 3 days .I had to run around and do what I had to before I took it and the nausea and headaches started.they let me delay increasing my dose as george was due and I couldn't drive feeling so rough.when I inceased the dose I got it all back again for 3 days but since then everything has been ok just means monthly bloods
It'll be great memories for 2020 something nice rather than all the bad bits. You definitely have had a hard time I though stupidly great now we know what it is they can start treatment but I feel that's going to take just as long as getting diagnosed. I'm finding it all frustrating I haven't seen my consultant spoken to him on the phone my GP is worse than useless so I don't bother even phoning anymore just plodding along hoping that I feel half like I use to or well enough to cook or bake xx
I'm fortunate I have a good multi dispinary team who communicate. My gp has been with me since the beginning of all this and I now have open access to him and he knows if I ring I'm really not well.we have a set plan ....if things start to flare I incease my meds for a few days if that doesnt help I ring him.sadly it's a long rollercoaster of a ride as there is no quick fix as meds take so long to work or not work as the case maybe then its trial and error until you find the drug combo that works for you.patience is a virtue x
Yep I'm not the most patient of patients lol I was never ill worked long hours done everything around the house now I'm relying on my daughter to help when I can't. Medication will be interesting as I don't tolerate a lot of pills it's going to be a very long road xx
After the problems with azathioprine I asked my consultant about which side effects to ride out and the advice was if you can ride out nausea headaches upset stomach they usually settle but being sick is one not to.
I think I need to take something and ride it out I hate feeling or being unwell but I'm getting to the point that I'll always feel like this xx
Thing is there are so few meds that help with lupus you soon run out of options if you stop at every side effect ( I dont mean you personally)
I know that's the problem it's like picking your poison xx
Do you have any problems with particular foods I seem to be having or with dairy products these days xx
I have a bit of ibs but I'm not 100% sure of my triggers.i think milk plays a part as does chilli and spicy foods like Indian
Hi there. I’m in Scotland too and weather today was lovely where I am as there’s a gentle breeze and it’s less humid than it was yesterday.
So, after 3 days on a stiflingly hot ward above the hospital boiler room, having my first Iloprost infusions and throwing up and crying with the worst headache imaginable - it felt amazing to be outside on our little patio today.
But then came the nausea and tonight it’s hit me like a ton of lead. I don’t know whether it’s delayed catch up from the Iloprost and hellishly hot ward, or the 30 minutes in direct sunshine lapping up the warmth and breeze earlier. So I can certainly relate to preferring cold weather - although I do better in still sunny cold than wind - which just about wipes the floor with me!
I have Systemic Sclerosis and Sjögren’s so this is a strange admission - but humidity has always just floored me and triggers awful flares. I can’t watch that “I’m a celebrity get me out of here“ programme because I only have to see and hear jungle and I feel the sweat and steaminess and feel ill. However I’m usually okay on lovely sunny days with a bit wind like today. In fact I love them . But now, with nausea, it suddenly seems that I can’t even tolerate my favourite type of weather. I hope you feel better soon.
Kat- in reply to
Oh I hope you feel better soon. Where in Scotland are you. I've never been flooded like this but then again this is very unusual weather were having xx
in reply to Kat-
East coast - near Burnt Island. I just couldn’t resist going out after such a horrible 3 days in hospital. And it was so lovely until bam the nausea hit me like a lorry. Could be an Iloprost hangover but if so it didn’t start until this evening. I’m guessing it was the sun as I wore factor 50 but not my hat and I basked in it briefly I admit. I seem to be changing in my toleration levels for all weather extremes these days.
I admit I did look up nausea and Covid just now because there was a suspected case on the ward yesterday but she wasn’t near me and was whisked away. It’s just that after shielding for so long it seems unlikely to be a sick bug or virus but I think it’s too soon to be having Covid symptoms after only a day or two of possible exposure.
Kat- in reply to
I was only in it for 5 minutes walked to and from work. I'm on the west coast apparently the warmest part of Scotland so far. Nausea is horrible I'm just struggling with the exhaustion doesn't matter how much sleep I get it's not enough xx
in reply to Kat-
It’s so tiring though isn’t it. Before the 3 days in hospital I was flaring horribly and totally wiped out. I feel like a barometer these days. Humidity makes me sweat and blow up like a red balloon. Today’s been much better but thunder storms are due tonight I believe so maybe humid tonight. X
Kat- in reply to
I've been in bed all day went to work for an hour straight home and back to bed I don't even have the energy to sit up xx
in reply to Kat-
I’ve been like this a lot lately too. Hopefully your flare up will pass soon. Meanwhile stay safe and just go with the flow until it cools a bit. I’m sure it can’t last for long. This is Scotland after all! X
I've had a lazy day as I know it's too hot for me to do much this is late for me I'm often in bed lucky if I see 10pm these days often fall asleep before the end of a programme.got the fan not sure how easy it will be to sleep tonight but I will say goodnight wish you a restful sleep and I hope we can catch up again it's been lovely to chat xx
Good night hopefully you sleep well it's been great chatting with you catch up soon 😊
Kat- in reply to
I would hope that the chance of it being covid are very low Id say it's because you haven't been feeling well and the heat won't help xx
in reply to Kat-
I am really hoping you’re right. My daughter in law is a renal nurse and tells me that there is very little Covid in Scotland now. X
Kat- in reply to
I would agree we are very lucky here but I hope people don't get complacent it's not away it's just hiding xx
in reply to Kat-
Yep I agree. I’m still shielding until I’m much more confident or there’s a vaccine.
Kat- in reply to
I'm not taking any chances I work in a school thankfully tomorrow is my last day lucky for me I'm on my own xx
in reply to Kat-
So have you been working throughout Lockdown or just gone back now schools are taking more pupils? My pal is a nursery school teacher in Quite a deprived part of Edinburgh and she’s been made to go back despite having asthma and being very prone to respiratory infections. She got really stressed out about it last week as pre school children not to be social distanced so she said in small nursery with only small outside area it was going to be impossible even with only a third of the children. Work related stress really doesn’t help. Hope you feel way better once tomorrow is over. X
Kat- in reply to
I had the first 7weeks of due to covid. We went back one week on one week off. Our union and my supervisor has been great they are so aware of my health they can't force anyone to work if they don't feel safe your friend can ask for a personal risk assessment they have a duty of care by law xx
in reply to Kat-
Yes she’s taking the right channels and has a great union rep but as her asthma has never hospitalised her it’s viewed as well managed - which is daft really.
Spanielmadlady in reply to
Sorry to hear of your current bad spell.it could well be a combination of everything.wards are hard work at the best of times never mind in a heatwave.wind seems to sap the energy from my legs and my lungs hate it too.i hope things settle down for you soon and the treatment helps .sending hugs x
in reply to Spanielmadlady
Thanks so much. It was a uniquely hellish few days as they had a fan briefly but infection control had it removed. On the plus side it seems to have helped my vascular pain a lot and hopefully next time will be less nightmarish!
Spanielmadlady in reply to
I get infection control but in 30 degrees theres got to be some kind of give surely.i pray it's not cv and that your next treatment is easier to bare xx
in reply to Spanielmadlady
Thanks so much! X
Spanielmadlady in reply to
Good night wishing you a restful sleep hope we catch up again x
For me I am sure it is the weather especially when a lot of electricity in the air - I felt terrible yesterday - breathing not good, pains in chest, back, feet, toes, wrists, all over.
We have to remember that the EMFs are so much higher now with all the mobile phones, masts, smart meters, wifi and 5G, satellites in their 1000's and so when the normal EMFs are particularly high, I expect myself to suffer being electro-sensitive.
Many of us are also light sensitive. When I get pains normally, I exercise gently - walking etc. but when it is so hot, I can't do that.
I don't go to my GP because the only one who understood and made any suggestion of help other than drugs, which I don't take because they just add stress to my already over-burdened body, has left the practice. He was fantastic and on the same 'wave-length' as me.
The weather is slowly on the change to cooler and less heavy, hopefully, so with any luck you will feel better soon - that is what I tell myself, anyway - we need to keep positive. x
Hi, I am really feeling it at moment too, must be the weather and high pollen count, sickness, dizziness and my asthma is worse too, we have to just hang in there x
Afternoon all hopefully everyone is feeling some relief. I'm feeling so much better now that's it's a little cooler. My knees are still sore but I can cope with that yesterday was possibly the worst I've been in a long time xxx
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