SUNSHINE PART TWO.....................: Just a quicky... - NRAS

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SUNSHINE PART TWO.....................

sylvi profile image
34 Replies

Just a quicky,the heat has got into my joints and boy am i suffering. I remember my late departed rheumy nurse say to me once that the extreme heat has the same effect as the cold and last night my hands in particular was very swollen. I didn't know how to walk and now it is 4am and i have just taken some painkillers as i ache somewhat and i haven't slept well. So i am dreading the heat today as i know by tonight i will be in agony. Take care out in the heat everyone and i hope you all enjoy the sun.xxxx

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sylvi profile image
sylvi
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34 Replies
summer32 profile image
summer32

ooh sylvi, I cant use my hands to do much this morning.. question is is it the sun or lack of meds?? you have only just started Cimza so it wont work straight away and I have been left with no meds since june 3d!!

sylvi profile image
sylvi

I know that summer my friend,i am making the point of the heat affecting us all. A lot of people will think that only the cold and wet makes us so sore. Cimzia will take up to 12 weeks to really feel the benefit. I am not lookng forward to the high tempretures. xxxxx

Am groaning and hobbling don't have fingers and toes have sausages instead. Luckily i inject today so hoping it will tone everything down. Hoping its not a hot one, hubby 's op this afternoon will be at the hospital from midday onwards until i can bring him home xxx

sylvi profile image
sylvi in reply to

Hoping his op goes well for him today.My feet hurt and last night they were burning as well.xxx

So sorry to hear that the heat is causing a flare up. In my case my dog (aged 15) has just been diagnosed with dementia, arthritis and cataracts all in same week. This has made her extremely fretful and clingy so I am sleeping on a mattress on the floor with her till her meds kick in. She currently wakes me every hour to check im stil there and responding to her. Its this lack of sleep thats causing my flare so I cant even moan to docs about it as they will say its my fault for putting my dogs care over my own :-(

Gentle hugs to all suffering at this time - whatever the cause.

sylvi profile image
sylvi in reply tonottsexsportfanatic

Your repaying your dogs loyalty to you. They become part of the family don't they. xxxxx

nottsexsportfanatic profile image
nottsexsportfanatic in reply tosylvi

They sure do, but none pet owners dont quite understand that bond. She was and still is there for me when Im flared and gives me cuddles and kisses to cheer me up.

sylvi profile image
sylvi in reply tonottsexsportfanatic

I don't own a pet,we used to have cockateils.I look after my neighbours cat when they are away and we are going to miss him no end as he is nearly 18yrs old,and we have been living here all his life.xxx

nottsexsportfanatic profile image
nottsexsportfanatic in reply tosylvi

A kind of step family for their cat - thats just as close. My neighbor helps me look after Jess too when Im struggling - she is just as attached having known her since I brought her from RSPCA 14 years ago :-)

jeanabelle profile image
jeanabelle in reply tonottsexsportfanatic

The poor auld thing.....it's terrible when they get old and sick.....you do right to look after her so well.....they have emotions and feelings the same as us.....she needs you now......I really do hope she gets better......they become like our children and it hurts to see them suffering.....please let us know how she gets on. Jean XXX

nottsexsportfanatic profile image
nottsexsportfanatic in reply tojeanabelle

Thanks, nice to have the reassurance that Im not going mad. Even my daughter is starting is starting to nag at me about her meds taking too long to help her! But they dont see her trying to help me get up off the mattress in the morning... quite amusing really, I have to roll onto my side then go onto forearms and knees and try to get up from there - at this stage she will go under my tummy and kiss my face as though trying to help support me and help me to my feet (yes I am talking about my dog and not my daughter).

I will keep you all up to date via my own blog rather than stealing Sylvi's though :-)

Tina

jeanabelle profile image
jeanabelle in reply tonottsexsportfanatic

Awh, the lovely wee thing.....they are so very loving aren't they? When I was first diagnosed three years ago and waiting to get on biologicals I went through what became the worst time of my life (next to 28 years of an horrific marriage that I ended years ago)! My partner of 7 years walked out on me.....I was in constant chronic pain 24 hours a day and I will admit I very nearly came to the conclusion that I had had enough and wanted out......the only thing that kept me going was the fact that my beautiful, faithfull, companion Barney would be so confused and lonely if I wasn't about to keep him company. He kept me sane in an insane situation. He is a rescue dog and is a big floppy Lhasa Apso with the gentlest nature. He snuggled up to me when he knew I was in a bad way.....when I cried he came out of his bed and would sit I front of me......letting me know that he was there to support me......

As you can guess I am an animal lover and when I can I foster puppy's for the local animal rescue centre......a dog won't lie to you, desert you in your time of need and will always be loyal......give me a dog any day!!

gilox profile image
gilox in reply tonottsexsportfanatic

I would do the same,my trio are what keeps me (almost) sane! :) I also have swollen hands & feet,but I'm finding that as long as I do'nt sit for too long its almost copable with,hoping for a longish walk tonight,when hopefully it will be cooler. I really am so lucky that I can still walk the dogs for over an hour every day,I dread not being able to do it, O.H thinks I'm addicted to walking,he could be right!

nottsexsportfanatic profile image
nottsexsportfanatic in reply togilox

I dont quite manage an hour in one go, but over the day we do.... however her back legs are starting to go now and she doesnt always bring her pads/feet down correctly (ie like us dragging our feet till we walk on the top of it rather than base) so I do have to be careful with her.

gilox profile image
gilox in reply tonottsexsportfanatic

Just got back,went out at 7!? feeling so energetic,really buzzing,feet are really sore & am having trouble typing ---but am determined to carry on walking for as long as I can,much

cooler here, so guessing thats why I was able to walk for so long,do hope both you & your darling doggie will soon be feeling better,take care, G

angel-delight profile image
angel-delight

I also have sausages for fingers, feet very swollen. I didn't realize it could be the heat. I am off anti-TNF for a while due to other health problems and unable to go back on them until I get the all clear once I have the test. We can't win!!

lynn-bel profile image
lynn-bel

Interesting, cos I thought the heat would be better for me as well! But all weekend I've had sausage fingers and feel pretty rough - put it down to being tired from having the grandson all weekend and not being too mobile, no exercise, as recovering from broken foot! So, in a way its a relief to know the heat can be as nasty as the cold - I just felt so good being on holiday in Calif. as had barely any pain. Thought due to the warmth and dry climate, UK is still slightly damp even when hot.

So, I've learned something today!!

sylvi profile image
sylvi in reply tolynn-bel

It is because of the extreme spike in the temp that causes it. You go from 18degrees then it jumps to 28 degrees thats what causes it.Hopefully it will all settle down when the weather calms down.xxx

jeanabelle profile image
jeanabelle in reply tosylvi

That's good to know. I haven't been great so I didn't sit out I it anyhow.....I spent yesterday on the sofa looking out at the garden through an open window unable to do almost anything at all.......today is another day and I do feel a bit better.....I get my second half dose of Abatacept on Thursday so I'm hoping it gets me off the sofa at least.......after this one it's every month for infusions.....I am really hoping this o e works for me......I've been a long time looking for one that works for me.....anyhow.....after what I've learned on here I'll keep we'll out of the sun, I definatly didn't want to make matters worse. XX

in reply tosylvi

Hi Sylvi - can you tell me were the documentation is for this? I am totally fine in the warm weather, even on holiday and of course this week has been really good. I see Scouser feels the same as Lynn Bel. Would be good ammunition should I need it with the consultant...guess this means you need to stay inside with air con

Hope you feel better soon

lynn-bel profile image
lynn-bel

Thanks Sylvi, it does help a bit to know why it happens doesn't it? Get fed up of myself moaning about the weather so haven't moaned yet about the heat! will take my painkillers and Naproxen and tough it out!

Havent been on this website a lot lately as I've just finished an OU course on digital photography and now its finished I can get back on this site a bit more.

thanks so much for the info.

sylvi profile image
sylvi in reply tolynn-bel

Your welcome.xx

Thanks Sylvi I am going to show your post to my Mum as I told her the heat is affecting me this week and she couldn't quite believe it. She said she thought I'd be better when the warmer weather got here, which to be fair so did I but I'm puffed up like a marshmallow man and in so much pain too. Hope we all get some relief soon though I'm loathe to wish the lovely weather away!

JoJo xxx

mattcass profile image
mattcass

Hi sylvi, Sorry to hear your having a bad time with the heat I am the opposite the heat makes me feel good but I don't mind it getting cold if it makes you feel better,mattcass

sandie2255 profile image
sandie2255

I'm so glad you posted this Sylvi. I have just come back from a week in Turkey and spent the whole week looking like a stuffed Turkey!! Hands and feet swollen much the whole week, and I began to feel a bit miffed as I thought the warmth would do me good!! Saying warmth....38 degrees most days!

Tried to cool myself off in the water but kept getting rescue ships from Greenpeace trying to haul me out to sea as they thought I was a beached sunburnt whale!!!

RA is such a learning curve and its so reassuring to be able to pop on here and read other peoples experiences.

Hugs to all and enjoy the sunshine.....sausge fingers and all! x

Caza profile image
Caza

Hi sylvi, good to read your blogs but sorry your in so much pain. When the consultant asked if the weather affected my joints,I said yes extreme weather does,I'm not sure he believed me though. It's cloudy & a lot cooler here today.

Sylvi,what's happened to John I miss his blogs? X

sylvi profile image
sylvi in reply toCaza

He is probally at his caravan.xxx

miss profile image
miss

Hi Sylvi like you not so happy with this heat. Saw my rheumy nurse this morn she reckons its the humidity that is causing the pain and swelling. xxxx

miss profile image
miss

Think when your away its a much dryer heat. Coz if my memory serves me wright you were much better away. Coz wright now hands wrists fingers and left foot are doing my nut in wright now,!!!!!!!!!!!!!!!!!!!!!!xx

miss profile image
miss

Don't no!!!!!!!!!! but hell my joints not all are having a party lol xx

fastball profile image
fastball

I've always been worse in the summer pain and tiredness. GP says that is all part and parcel of the illness (desease)

grace37 profile image
grace37

I live in southern portugal average summer temp 34 +. Have been advised by my rheumatologist to stay out of sun until after 6 pm. We have not as yet got my inflammation under control so I would imagine heat only inflames more when it is present.

I also suffer with vasculitis which has come on since the RA - this definitely gets worse with the heat and I too have been told to stay out of the sun during the heat of the day - maybe this is why a few of us suffer more in the sun (as it puts more pressure on our veins in trying to cool us down - just a thought).

Tina

jezebel53 profile image
jezebel53

Hi Sylvi, I dread the heat as my hands and feet swell up and are extremely painful, today I've been to the hospital and they have given me a steroid injection. I've hardly been able to do anything for nearly 2 weeks now and the pain has been unbearable, even my veins hurt around my wrists and ankles.

I've had RA for 30 years and I'm 61 years old next birthday, I'm being started on a different treatment soon so here's hoping for good things!

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