Cold weather!!!

[sciqueen]

Hi All

This cold weather is playing havoc with my ra.

The last few days I have had my right knee throbbing on and off. This morning I woke up with slight stiffness in my hands & wrists despite the drug combination I am currently taking is working (I have not had background pain for at least two wks now), and I had to take pain relief.

Hence I was slow this morning and did not get going until the pain relief kicked in so I could move again with ease. In fact I have had to take pain relief the last 3 or 4 days, mainly due to my knee throbbing.

The night before last I felt really cold and I went to bed in a night shirt, a sleep cardigan and socks. I took the socks of during the night.

I was to accompany my husband with walking the dog today, but I could not face going outside as I felt it was to cold.

Will the cold always affect me this way? I know its going to get colder even though I live in the south - Essex; and the snow is yet to come (we always get snow).

I know if was not for the drugs I would suffer alot more, so thank god for the drugs as they are helping, but I am stressing that the cold will actually cause me to flare again as it has in the past and they will want to up my mtx again. I can't cope with another increase as the drug is making me sick now and I have 3/4 days down time with it and of course the accompany hair loss! I think this fear is stopping me from going out. How would I cope back at work I don't know.

Sorry guys I did not want to end up moaning,

Thanks for listening

Sci xxx

[Hidden]

My hands have been vslow to move the last couple of days also! and today my knees were bad also, so I can sympathise, try to keep warm, thats Im doing and gently try to mobilise yourself .

Alison ( im dreading the snow also!) xx

[sciqueen in reply to Hidden]

Ali

You make me smile! I should know better that what I experience, there is bound to be somebody else who has experienced it before I.

I am dreading this my first winter with ra. I have a physio appt tomorrow, but an ambulance comes for me and returns me home, so I am not out in the cold for long only to and from ambulance. Other than that I have no plans to venture out.

Sylvi advised me about so footless hosiery & thermals. I still have not got the thermals, but have sorted out the hosiery (if I can get them on and up)and shall be wearing them with socks and have bought some new bigger sized boots. They are lined with genuine lambs wool inside. I got them to help keep my feet warm, shall wear them tomorrow for the physio appt.

Lets hope that it does not get any colder for a while,

Take care & thanks

Sci x

[sylvi in reply to sciqueen]

go to your mobility shop there is a gadget that you can get that will help you put them on it looks funny to be honest,but if it does the job who cares. I will go to bedworth tomorrow as ther's a stall selling mobility aids and i will get a book and tell you exactly what it is. Yes the cold is hurting me too. Have had a rotten weekend with the pain and lack of sleep.

Sylvi.xx

[sylvi in reply to sylvi]

go to cosyfeet.com, you'll see that they are called 1,sock/stocking frame £16, 2, compression stocking fitter £28.50 and they also sell a sock aid, £9.00. hope this helps.

Sylvi. xx

[Hidden]

The snow is here for us and it's bitter. You want to experience this before you complain about Essex honestly! It was minus five this morning - now frozen over and a lot colder. You wouldn't believe this is part of the UK would you?!

I've always been very warm blooded and able to cope okay with cold but this is my first winter with RA and I dread it. So I completely understand where you are coming from. I spend my whole life now longing for warmth for the first time ever and can't seem to get warm at all. So fingerless gloves have become necessary constantly and i find myself hiding away from the terrible weather outside - partly because I'm so scared of slipping as we live high up on a steep hill where the snow has already deposited a fine layer - and partly because it seems to hurt my body all by itself. OH is rather pleased because he's always felt the cold badly and we are both now fantasising about moving somewhere lovely like Majorca or Barcelona - but I'm very fair and know I'd find extreme heat just as awful so I think some balance is required - Cornwall perhaps?!

Nite nite keep warm. Tilda x

[sciqueen in reply to Hidden]

Hi Tilda

ouch it was cold this morning. Alot colder than Essex, how you cope I don't know. Both extremes affect me, but I think I tolerate the hot weather slightly better.

I think those of us who don't have the cold as a trigger are lucky.

Could not live on a hot island either as that brings its own hell.

Well wrap up warm, how is the mtx going?

Keep well

Sci xx

[Hidden in reply to sciqueen]

BRRR - it's evil out there - just had to let the dog out and get the boys up as they have to walk to school as car is off down in town poor things!

Me - I'd just get back into bed if I could but will start easing the joints by moving and getting extremely warm clothes on! Hubby just walking home after a night shift - I'm so lucky I don't have to go anywhere except the studio at the back of our house today and the dog will have to put up with a potter round the garden as the gales are raging along with the sleet, snow and hail! LOVELY! TTx

Ps second MTX day tonight and a parent's evening to walk to straight after - all okay so far not had hair drop out of nausea yet thanks for asking Sci.

.

[sylvi]

The extreme heat took me by surprise when i was in spain a few years ago. It was about 40c and i couldn't work out why i was suffering ( i love the sun) Then when i got back i had to see rheumy nurse and thats when she told me the extremme change in tempretures have the same effect as the cold. That was a shock i can tell you. This winter i'm worse than others, had a rotten weekend with the pain.

I have had a better nights sleep even though i woke up at 5.00am

Take care sylvi. xx

[Hidden]

The aid Sylvi mentioned is a sock aid instead of buying one see your ot mine gave me lots of small household aids to help.

I've been the same in this cold weather I hate it

Take care x x

Julie x x

[sciqueen in reply to Hidden]

Hi Julie

You are correct. I mentioned it to the physio this afternoon and she gave a mobility aid book. I found it in there under the title of sock aid. It looks monstrous!

I wonder if anybody has used one? It does not look like it will be beneficial???

Cheers Joanne x

[Hidden in reply to sciqueen]

I use mine most days, It may look silly I never beleived it could help until I tried it now I wouldnt be able to put my socks, tights etc on without it!

Unless other half helps that is.

Did your physio not mention the ot will be able to supply you with one to save you buying one?

[sciqueen in reply to Hidden]

No she never, but I am going to ask for an appt to see OH. I have read somewhere that there is a long waiting list to see OH? So I will ask when I see rheumy this month and enquire how long I will have to wait.

Thanks for the info,

Joanne x

ps Hope you are well? How are the med working now??

[Hidden in reply to sciqueen]

Hi Joanne,

Hoping you get in with the OT soon, I know our department normally has about a 6 week wait, just make a list off all the things you need help or aids to help you get along that way you will remember to ask when your appointment comes around.

Im still waiting to start Ritumimab, in the meantime Im getting by on methotraxte and lots off steriods, but still having a lot off trouble with hands, knees and my back is causing me a lot off pain, not sure if its down to the cold or Im in a mini flare or the enbrel I stoped was doing a litte.

Hoping to start treatment before christmas but with only 3 weeks left not sure If I will.

[Hidden]

Minus 1 degrees at 9.3O am here in the frozen north - and a bitingly cold wind - when I went out to walk the dogs. They love it but despite long-sleeve thermal vest, thermal long johns, thermal socks and a second pair of socks, joggers, thermal sweatshirt, thermal coat, thermal gloves, sheepskin boot liners etc etc I still lost all feeling in my extremities [hands, toes and nose!]. I'm sat on the sofa thawing out with porridge and tea and the heating clicked up:-}

But last year my thermometer recorded -18 at 9.3O am so I'm not complaining! Because of my lung inflammation (RA nodules} I have difficulty breathing once it goes below -5 and spent 3 weeks stuck in the house last winter. But it does look lovely, the leaves are all twinkly with frost and there's a very blue sky and bright sunshine which keeps the house nice and bright. I also don't feel like it's properly winter until we get frost and ice:-}

I wear my thermals in the house and like Tilda have fingerless gloves. In extremes of temperature my joints protest - over 3O degrees or under O degrees.

The Swedish have an expression "there's no such thing as bad weather, just the wrong clothes". I think I need to start looking at outdoor gear for polar explorers - with a higher thermal rating to conserve the heat around my joints so that I don't stiffen and seize up:-}

Cece x

[Gina_K]

I too am feeling the drop in temp hands and feet and knees aching away. Is a lovely day here in DUblin, but quite cold, last year we recorded a temp of minus 20!! Icicles were hanging down frm gutters. I don't ever remember anything quite like it, we usually escape extremes as on east coast, but Criky last year was awful.

I am ok indoors, and have started to light a real fire the last few winters, andfindthat fabulous, have never tried thermals, my mum wears them though, mayb when I get back to shops will have a look.

They say, a change of more than 10degrees affects Ra. As myrheumy would replywhois this ' they' .

Still waiting for a call back frm her re high alt!,

Gina.

[sciqueen in reply to Gina_K]

Thanks Gina

Hope you are well & indeed got that call back

Joanne x

[Gina_K in reply to sciqueen]

No call yet. tap tap of impatient fingers!

[Gina_K]

Ps. Sry about joined up words on prev it's the iPad, not on lapper at mo.

G

[jenna]

hi all,

this is first time i have left a comment so bear with me. reading about the cold. Can i recommend an electric fleece, i bought mine on amazone, and i would not be without it, a bit pricey at £40, but to snuggle up into this is wonderful, Its a nice chocolate colour, and very soft, it has 9 heat settings and 9 timer, a good size for wrapping round you. settings, it also saves on heating bills if you want to get warm quickly, and the heating has not reached its temp.

jenna

[sciqueen in reply to jenna]

Hi Jenna and welcome, its good to hear from you!

I've got the bed covered it was the first thing I did, when I realised that heat had an effect on my ra. I changed my duvet to a duck feather & down, I have a dress duvet also on top and the first layer is a micro fibre blanket. My bed is toasty warm and I don't need to put heating on during the days. I also have a duck feather & down mattress topper for comfort.

The downside is that hubby complains the bed is too hot now, but he realises I feel the cold alot more so just flicks the duvets off most nites.

But thank you for the suggestion, somebody reading my blog will benefit I am sure.

Cheers Joanne x

[LavendarLady]

Hi All, I think extremes of temperature whether heat or cold affects us with RA. I find if it is too hot, my joints start aching and swelling the same as they do when it is very cold. Last winter here in Norfolk was a nightmare - several feet of snow and damp with it and I did suffer but the previous winter despite the snow and ice, it was a very dry cold (straight from Siberia I think) and I was much better than I expected to be. So perhaps it is the combination of damp and cold rather than just the cold.

Jenna's suggestion of an electric fleece sounds wonderful so will have a look on Amazon and see if they still have one.

My heavy winter coat came out yesterday. It is pretty old now but so warm and comes almost to my ankles so with boots on, I am pretty snug when I go out.

No snow here yet but frost and very cold. LavendarLady x

[sciqueen in reply to LavendarLady]

Hi LL

Same here just frost. But the snow is coming, I just know we are going to get it and you are further East, than I am, so I believe you will get it to! Maybe not this week though - hopefully. I hope we don't get it before chrimbo.

Keep warm

Sci x