All over the place like a mad women’s drawers!! - NRAS

NRAS

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All over the place like a mad women’s drawers!!

J1707- profile image
68 Replies

Honestly this weather my poor body and head hasn’t a clue what’s happening..

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J1707- profile image
J1707-
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68 Replies
wishbone profile image
wishbone

I hate this weather!

Neonkittie17 profile image
Neonkittie17 in reply towishbone

I feel like a big bloaty balloon from all the drinks I’m having to keep cool and hydrated. (I should add they are non alcoholic drinks. So far, anyhow! 😆)

J1707- profile image
J1707- in reply toNeonkittie17

I’m really not attractive at the moment well to be fair I’m rough looking all the time 😂😂

Neonkittie17 profile image
Neonkittie17 in reply toJ1707-

I’m sure that’s not true. 🩷 I’m floating around in long linen/cotton dresses covering my legs: That’s a good thing. 😆

helenlw7 profile image
helenlw7

I hate this weather too. I barely slept last night because every joint was aching, even the ones that had steroid injections on Tuesday. It also affects my breathing because I have severe asthma and ILD.

Neonkittie17 profile image
Neonkittie17 in reply tohelenlw7

😢🩷

MaryTH profile image
MaryTH in reply tohelenlw7

Me to x

MadBunny profile image
MadBunny

I've been so bad this year- more so than usual Aching all over , can't get comfortable in bed so can't sleep, little energy, short of breath (although I think heart failure recently added to the mix hasn't helped).I usually get mild to moderate hay fever but it's been really bad this year and has made my asthma worse.

Today is a bit cooler and less humid so I feel a bit better.

Neonkittie17 profile image
Neonkittie17 in reply toMadBunny

I hope for fresher weather soon to help your chest. 🩷

MadBunny profile image
MadBunny in reply toNeonkittie17

Thanks. I'm feeling a bit better today but still struggling if I go out for a walk 🐰

Neonkittie17 profile image
Neonkittie17 in reply toMadBunny

I’d say walk early evening, but it’s tending to be even warmer than the daytime at the mo! 😳

MadBunny profile image
MadBunny in reply toNeonkittie17

Yes that's odd. Hottest time used to be noon -3pmI tend to go out early morning if I'm awake🐰

Neonkittie17 profile image
Neonkittie17 in reply toMadBunny

I’ve noticed the last few years that it gets hotter around 5-8pm in the summer. My hubby loves a very early morning walk round the local country park before work, as he works from home mostly, but my knees don’t want to get up at 5.30am!

MadBunny profile image
MadBunny in reply toNeonkittie17

7am is the earliest I can manage ☺️🐰

Neonkittie17 profile image
Neonkittie17 in reply toMadBunny

I’d say the same! Mornings are still very slow!

MadBunny profile image
MadBunny in reply toNeonkittie17

Yes, very much 🐰

J1707- profile image
J1707- in reply toNeonkittie17

Not a chance if it doesn’t happen in the morning the evening I’m wrung out

Neonkittie17 profile image
Neonkittie17 in reply toJ1707-

I tend to run out of steam around 4pm.

Blackwitch profile image
Blackwitch in reply toNeonkittie17

I’ve run out of steam by the time I’ve got up, had a wash and got dressed. If I have a shower and wash my hair, I have to go back to bed. I just have no energy at all.

J1707- profile image
J1707- in reply toBlackwitch

I’m like that at the moment

Neonkittie17 profile image
Neonkittie17 in reply toBlackwitch

Is your RA under good control via RA medication? I felt like that in my early RA and when my meds failed me and RA crept in. My GP used to call it “unprovoked exhaustion”. Yup he was right. Just eating a sandwich used to tire me out. Hope you can soon feel less fatigued. 🙏

J1707- profile image
J1707- in reply toNeonkittie17

I’m like that at the moment. When everything was out of control I’d have to leave the table after the first bite as was too tied to chew and I’d lie down and sleep for hours . I’m still like that when things unsettled like with the weather bad with swelling worse when it goes down as peripheral neuropathy joins in

Neonkittie17 profile image
Neonkittie17 in reply toJ1707-

Do you feel your med is working well enough? I hope so but the heat can make you feel worse than your normal fatigue.

J1707- profile image
J1707- in reply toNeonkittie17

Just started a new drug 10 weeks ago . Initially fantastic but with this weather a real down turn . I will just have to see once this humidity settles how my body reacts. I hope it works this is drug no 9 I’m running out of options

Neonkittie17 profile image
Neonkittie17 in reply toJ1707-

Let’s hope this is a heat blip and you’re back on track soon. 🙏🩷

J1707- profile image
J1707- in reply toNeonkittie17

Thanks x

Neonkittie17 profile image
Neonkittie17 in reply toJ1707-

🩷

Blackwitch profile image
Blackwitch in reply toNeonkittie17

Hi Neonkittie. I don’t think it’s under control at all. I’ve been treated for nearly 20 years now, started on Celebrex by my GP first then once Rheumatology got hold of me, I started on all the usual (Methotrexate, Sulphasalazine, Hydroxychloroquine etc with Diclofenac, Etodolac. As I became intolerant to everything, the only thing that worked were the IM Depo-Medrone steroid injections. He tried me again on Metoject pens but I reacted to those too. Eventually, I went onto Benepali which I was hopeful for. Once they kicked in, I felt really ill and came out in a rash so was told to stop. Then my consultant of 20 years left and at my last appointment with a nurse I was told my new consultant couldn’t see me until October so I’d just have to wait. Like everyone else my joints are painful, swollen but because my fingers weren’t red, she wouldn’t give me a steroid injection. Instead, I was referred to a Pain Clinic (7th!), so have refused that. Talk about gobsmacked! My rheumatologist appointment has been brought forward so I go at the end of next week. I have other health conditions so at least I have painkillers. I’m afraid I’ve lost all confidence in the NHS and the privatised pain clinics.

I hope you’re doing OK. x

Kati66 profile image
Kati66 in reply toMadBunny

I’m with you on the hayfever making asthma worse!! Hate this weather too 🥵🥵🥵

MadBunny profile image
MadBunny in reply toKati66

I've never suffered with it as badly as this before. Mild sneezing and runny nose, but this was in a different league. Thankfully it's subsided now and hopefully the worst of it is over.

Pippy25 profile image
Pippy25

I hear you J it's awful isn't it.

J1707- profile image
J1707- in reply toPippy25

🥵

Pippy25 profile image
Pippy25 in reply toJ1707-

Having another Sue Ellen day here I'm afraid (my name for swelling...say Sue Ellen quickly and it soon sounds like Swellin) Take care J and let's hope it lifts soon 🥵

KittyJ profile image
KittyJ

it incapacitates me too, very difficult to work, I just collapse and am good for nothing when I get home 😢

Fruitandnutcase profile image
Fruitandnutcase

It really is very strange, I used to think it was the cold, damp weather that made my poor old body ache and that I would feel better when it was warmer - turns out I don’t! Well at least it means there is no point selling up and heading for warmer climes.

Blackberrywine profile image
Blackberrywine

Well your post made me chuckle. 🤣 The title I mean!

J1707- profile image
J1707- in reply toBlackberrywine

My Irish grandmothers saying she had some great ones 😂

Blackberrywine profile image
Blackberrywine in reply toJ1707-

Made me laugh. We all surely need that!🤣

Gottarelax profile image
Gottarelax

I'm nodding, laughing and wincing at the same time...I just love your simile, agree on the weather and feel your pain.

J1707- profile image
J1707-

it’s great to share the misery 😂😂 best wishes to all suffers of the mad women drawers disease.

To top it all bloody HRT patch has a mission of it’s own just found it on my calf it took a trip from bum 😂😂

Fluffontoast profile image
Fluffontoast in reply toJ1707-

My patch is thinking of doing the same!

Neonkittie17 profile image
Neonkittie17 in reply toJ1707-

In the heat they do travel! My pain patch slides off in the night. 🤨

MadBunny profile image
MadBunny in reply toJ1707-

😂😂

medway-lady profile image
medway-lady

I like it warmer but not the humidity. We invested years ago in an air conditioner, it’s great! As dehumidifier too. And at night we open the loft hatch that really helps. We’ve now got the storm and my houseplants are out getting a shower, so far lightening but no thunder. This morning at the Medway Maritime Hospital the heat was awful. Over 27 and I felt ill just being there. How the staff work in that heat is amazing. My husband went outside to cool off !

Blackberrywine profile image
Blackberrywine in reply tomedway-lady

Yes the humidity is awful. I love the sun and dry heat. Popped to my plot early evening thinking it would be cool...it was awful despite the rain.

Fluffontoast profile image
Fluffontoast

Fat fingers, fat feet thanks to weather. Fortunately not much aches, thanks to steroids.

nanny_bee71 profile image
nanny_bee71

It would seem we are all suffering from the summer we have been waiting for - high pressure not good - best temperatures not more than 22 degs. Good excuse to wear the floatie kaftans to keep cool. 😁

Haz58 profile image
Haz58

Me too!

Gnarli profile image
Gnarli

I wondered where they went 😁. The heat is making me an achy drippy misery and the humidity has done unthinkable things to my hair. It's turned into a curly mess a bit like a bad tempered cloud. As we're looking after my daughter's dog we now have two very flat dogs who get walked very early and a cross cat. Roll on normality.

sylvi profile image
sylvi

It is not consistent is it. I wish it would stay warm and not have rain as well. I love the hot weather, but this mis match of weather is not good for anyone. xxxx

Zip1 profile image
Zip1

likewise, thank you everyone for posting I was beginning to worry that my meds had stopped working but feeling a bit less achy this morning… it’s amazing how the weather cause so much pain…..

Runrig01 profile image
Runrig01

I do believe it’s the humidity, rather than the heat. I get dreadful head sweats, and my naturally gentle waves, end up bass mass of curls, going in different directions. I wear hearing aids, so have been drying my hair 5-6 x a day. If anyone has a solution to head sweats I’m all ears. I’m told it’s partly due to low cortisol, as the heat and pains, burn through cortisol quicker, and because I don’t produce any, I have to remember to take extra steroids, which I probably hold off to long as I don’t like updosing. Roll on Autumn 🤪👍

Blackwitch profile image
Blackwitch in reply toRunrig01

At least you have hair. Mine is so fine and thin and is falling out. I suppose I’ll have to wait until I feel better and give in to the inevitable short cut 😭

Kati66 profile image
Kati66

Totally agree! The weather this year has really messed with my body! Humidity really makes my RA, Fibro and Myelopathy much worse! I’ve got to go to the hairdressers today, fortunately they have air conditioning . I bought a “cold pillow” insert for at night (a bit like the dog ones) and that helps a bit but it warms up after a few hours so I take it out. I have fans all over the house too. Roll on autumn, sorry to any sun lovers. 😮

arvine profile image
arvine in reply toKati66

Interesting can I ask what is a “cold pillow”

Kati66 profile image
Kati66 in reply toarvine

It’s like a dog cool mat but thicker. You place it inside your pillow slip. I had it last night and it makes my head and neck much cooler

Gnarli profile image
Gnarli in reply toKati66

I'm ashamed to admit I nicked the dog's cool mat 🤫. She wouldn't use it anyway

Kati66 profile image
Kati66 in reply toGnarli

😂😂😂😂😂, I did think about pinching my dogs too!! I’m sure it’s the same thing 👍🏻👍🏻

Gnarli profile image
Gnarli in reply toKati66

🤣😂🤣😂

J1707- profile image
J1707- in reply toGnarli

Love your style 😂🤣

HappykindaGal profile image
HappykindaGal

My ankles are a barometer for humidity 😂😂. But I wouldn’t swap this weather for anything as it doesn’t last long. I detest our six month long winters of short grey days and would love to live in Southern Europe if they paid for my biologics.

It’s a joy to have daylight early morning and enjoy the stillness of 5am

Onedaymore1 profile image
Onedaymore1

same here with this stupid Body of mine! The Change in weather hour to hour play’s havoc with my FMS/CFS & Menopause mixed in. This flipping rollercoaster never ends!

Gjbrose profile image
Gjbrose

my ankles are weather prediction at the moment I feel like I’m melting and it’s a shame as I love the warmth of the sun 🌞

Sore and achy hands intermittently with my knees, had my first infliximab infusion on Tuesday so far no side effects 😀

Lovely flowers Sylvi xx

My ankles are so swollen and my skin really itchy. I do not cope in the sun but my OH loves it. He wants to eat every meal outdoors and I want to hide in a darkened room with a fan. 😎😂

Poshcards profile image
Poshcards

ha, you made me smile, thank you xx

KASHMIRI1 profile image
KASHMIRI1

Best weather ever for me, stops feeling low and helps aches and pains.

Deeb1764 profile image
Deeb1764

😂😂😂🤣🤣🤣🤣 human barometers that we are

Sue4983 profile image
Sue4983

I also found last week that the side effects from my Methotrexate seemed worse and lasted longer as well

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