Raynauds swallon and red and ache like heck - LUPUS UK

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Raynauds swallon and red and ache like heck

NiksB profile image
10 Replies

I was told i have raynauds but most of the books say about white tips to fingers etc.. but i wear cotton fingerless gloves which helps with the cold, get things out of the fridge early so its warm by the time i come to cut it, insulated sleves to go over cans etc but

the bit which drivens me nuts is my knucles and finger joints are hot and sore, if im warm then my hands throb and im always moving them to lay on something abit cooler like our leather sofa but i cant use anything colder because then they ache and go numb then hurt twice asmuch as the blood gets to my fingers again. I do take 3 different heart meds which i know can not help but i need the combo for my heart. My specialist knows and was intereasted in the cotton gloves but they are a pain during the day because you dont relalize how much you wash your hands through the day so you have to take them on and off.(mostly wear them out or at night to sleep in) Any ideas... what do you do or use, and i can tell anymore about these gloves...

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NiksB
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10 Replies
loopylady profile image
loopylady

Hi NicksB, I completely sympathise with you, one of my first symptoms as a teenager was Raynaud's as chronic as you are describing. I still suffer 20years on with Raynauds and chilblains but nowhere near as bad as the early days, I do find that Adelat Retard helps as the blood vessels open and the blood rushes to my fingers and toes. Keep wearing your gloves for the majority, I always wear gloves from the moment I leave the house, be aware of the water temp when washing your hands also.

My grandmother bought me some Neoprene fingerless gloves which I find useful in the house, it doesn't stop me having to remove them to wash my hands but it does help when I'm putting my hands in the fridge or freezer.

Keep strong, LOLL

LOLL=Lots of Lupus Love :)

deadasadodo profile image
deadasadodo

Hi both

I too have Raynauds- I find my feet also also affected and my nose and lips, does this sound familiar??

loopylady profile image
loopylady

Hi deadasadodo,

My feet are too affected, sore chillblains and lack of circulation, I try and keep them warm without being too hot. I try and keep warm wearing hats and scarves when I go out and try not to expose myself to the cold or the sun for long periods.

Stay strong, LOLL :)

lupylupus profile image
lupylupus

Morning!

I have Lupus, Sjogrens and Raynaud's. I have medication for my blood pressure and that makes the Raynaud's much worse.

I also have problems with my joints, especially my hands. I see an occupational therapist for my hands (I have trigger finger in both hands) and she has given me fingerless support gloves. They are elasticated and therefore fit snugley. They help to stop my hands from swelling in the night. She suggested wearing them under my gloves when I leave the house in the cold weather. They do help and I use them a lot.

I try to keep my hands and feet warm whenever possible and let the tap run a while before washing my hands so that the water isn't too cold.

I also have a very cold nose like deadasadodo (such a funny name....LOL) I wonder if there is an association with raynaud's now?? I hope it doesn't turn white and blue in the cold weather now!!!! LOL!!

Margaret x

NiksB profile image
NiksB

Thanks guys for the info, maybe ill try again about the heart meds and see if there is a better solution...

Sue2803 profile image
Sue2803

Nifedipine is quite effective for Reynaulds but unfortunately this lowers the blood pressure quite a bit which was why I was unable to take it, my GP said he had heard that Fluoxetine (Prozac) seemed to help patients who could not take the Nifedipine, I tried this because the Reynaulds was really bad and the difference is absolutely amazing. Was not keen to take the Fluoxetine as it is an anti depressant but really glad I do now.

NiksB profile image
NiksB

Thanks i will ask if its possible.....

tiredmum profile image
tiredmum

Hi,

i too have raynauds, lupus, sjogrens and hughes.

There is nothing worse than playing the hokey cokey in bed sticking your foot out of the covers when its throbbing and then putting it back in when its cold.

I have never thought about wearing cotton gloves, sounds like a fab idea.

After suffering for over 30 years with chilblains on my hands and feet for nearly 9 months of the year, i have learnt that you need to go out in winter ( autumn and spring) looking like the mitchelin man. My coat is a size bigger than my normal clothes for all the layers i have to wear. I wear boots that are a size too big so i can fit two pairs of thick socks on. I have invested in some very thick thermal gloves that give you monster sized hands and have found those hand warmers where you break the seal and they get warm for half an hour an absolute wonder.

Try not to get too cold or overly warm, never put your feet on the radiator, have plenty of warm drinks and wear many thin layers instead of one thick one.

Oh and don't forget the thermal longjohns and vest!!!

I can fully sympathise with you, but try and remain positive and strong as you waddle down the street in your numerous layers lol

:)

deadasadodo profile image
deadasadodo

Hi Guys

me again

Reading through all the replies it is great to see differnent ways people cope and pick up hints and good tips. I too was given the option of Nifedipine, but did not want to take it as my fathers family have a terrible history of high blood pressure and heart problems, so I did not want to mess about with my own blood pressure.

Outside I wear leather gloves from about Sept till about April/May time- I find good leather works well and if your hands a warm when you put them on the leather will keep them warm. My feet were causing me concern as they would go numb on occasion and I was worried about falling over- this year I broke the bank and bought a pair of Uggs- other boots are avaiable!- but they are fantasic- my feet are like toast-my husband has to rip them off my feet- otherwise I woudl wear tem to bed. I, wear a wooly hat from Nov to about March and have invested in what my mother would have called a "good" coat.

My nose and lips are strange- normally this is due to extremes in temp and I ALWAYS wear lipstick- this is partly to disguise the fact that my lips change colour, red- white-blue, but I also find that the lipstick protects my lips from getting cold (must form some sort of barrier)- I put lip save (balm) on at night and find that helps.

My RS also kicks off if I am stressed or very tired.

One question I have which you may be able to help with- I am finding the feeling in my hands has very slowlv deteroriated over the years, I am now noticing that I can pick up really hot things and not notice till quite a time later that they are hot, this has resulted in a small number of burns/.accidents. I also have noticed that I am dropping stuff which I thought I had a good grip on. I am not sure if this is due to the SLE and joint pain or if the combined effect of having Raynaulds over the years has effected my nerve endings. Does anyone have a similar experience.

Apols for rabbiting on, hopefully you will find it useful!

Davina

xx

NiksB profile image
NiksB

Hi guys

I use these cotten gloves at night called IMAK boring grey and they need to be hand washed but they have slight lyrca so they keep the swelling down.

I have abit of lose of feeling in hands and feet and had a fall last year june time, had soft tissue injury in my foot which when ever i need to walk alot it swells up had it xrayed again and nothing broken, abit worried its not going to heal.

Also on my left hand i get lose of feeling in my last two fingers, and i dont take things from people i ask them to put it down, i dont know why but i find i can then pick it up an judge if i can hold it or not...dont know if raynauds but its me but it terrifi me that ill drop something hot and i avoid social situations because its to complicated to explain and i get embarressed if people notice and i knoe it shouldnt matter but it does. You certainly feel abit older than you are.

Thanks for suggestions guys please keep them coming......

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