Had a really bad Raynauds attack last night - just popped out for half hour wearing all my thermals etc. Knew it, the pain gradually started - when I got in the pain was extreme in my fingers but my body was like toast ...... Hubby help me get my jumpers etc off then I started walking round the room trying my best not to cry with the pain .... But the pain overtook me and poor hubby there is just nothing he could do. Lasted for about 25 mins and made me feel physically sick -:(.
The fingers my ulcers are on are still throbbing today and feeling unwell. Oh, please please let us have some warm weather .....
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Anteater
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I think you are brave even trying to go out in this weather if you have Raynauds! I have to resign myself that I just have to stay in when the weather is like this. This winter seems to have gone on for ages and I am trying to not let my mind torment myself that I have to stay in and cant even take my little dog to the park, as the pain from a raynauds attack is just not worth it ! prevention is better than cure !
I live in Ugg boots even in the house and still have to dress as though I am off on a mountaineering year expedition !
I also hear ya about the constant throbbing from ulcers, which in my experience, take ages to heal, and a challenge to keep dry.
When I have a little 'coping wobble', I give myself the 'day off' and spend the remainder of the day doing things that make me feel good as well as warm ! This usually involves food and a favourite book, dance music or tv programme. Admittedly, the 'things that I like to do' list has had to be modified to take into account the raynauds and scleroderma demands of my body ! I am loving the big bags of Morrisons toffee popcorn at the moment - it doesnt seem to aggravate my acid, bonus! and I like fridays as I love watching Ice Road truckers and thanking my lucky stars that I dont have a job like that, although I really enjoy the scenery !
I hope you are feeling a bit better since posting....... I would love to hear whats on your 'things that I like to do list' or coping tips which help you x
You see to feel guilty about your husband who is unable to help you in your pain. I understand that very well. It is a constant thought with me. My hubby asks me if he can do anything to help and I say "unfortunately, you can't, but a cuddle always helps". I can't remember if you are on medication for your Raynaud's. I agree with Living-the-dream way of doing things. When I can, I spoil myself and do what I want. I like Jelly babies.
I have had Raynauds for over 40 years and CREST for about 15years. I always make sure my hands are really warm (hot water bottle/warm water soak/ sit with hands under legs/wheatie bags that you warm up in the microwave/etc) before I go out. Once hands are warm wear really warm mittens (prewarmed on radiator) - mine are sheepskin and put a Thermogel - Reusable Hand Warmer in each mitten.
These hand warmers are activated by the press of a button. Flex the metal disc until the crystals form, the gel will then generate heat for approx. 25 minutes. They are ideal when instant heat is required for a short period of time. To reactivate simply boil in a pan of water for 5-10 minutes. They can then be used many times.Available from the raynauds and Scleroderma association at £4.50 a pair. Boots used to sell these too but I don't know if they still do. With the mittens keeping your hand heat in and extra heat provided by the thermogel when you need it you should be able to last for about 30 mins. You can move the thermogel around in the mitten to spread the heat to different parts of your hands. I always buy a coat with big pockets so that I can also put my mittened hands into my pockets as an extra source of heat!
Finger ulcers - i soak in salt water twice a day and use a mepore dresing which allows the wound to breath. You can also get non-stick padded dressings but I find these a bit bulky.
Raynauds doesn't have to ruin your life - you just need to manage it. Often it is common sense with a bit or trial and error!!
Good luck - hopefully the worst of the winter has now passed and we will have a warm summer!
I agree the hand warmers are wonderful. You can get them now in many pharmacies (looking like a miniature hot water bottle) but the RSA ones are a bit bigger and last longer (ie they are warm for longer).
Can you believe that my friend with whom I am staying took two of them to recharge yesterday, put them in water on the gas stove and forgot them. Totally ruined. I have sos'd to the RSA shop for more.
Another tip for finger ulcers is to use a thin pair of rubber gloves for anything where you fingers might get wet - including going to the loo.
I play golf and Raynauds in the cold weather is such a challenge. I take 10mg Nifedipine tablet but this seems to be less effective as it used to be. Also makes make blood pressure too low and sometimes get dizzy. What I have found is to get the charcoal sticks which you light with a lighter and put into velvet covered tins. These heat up really well and can last up to 6 hours!!
You can get them online and come with or without the velvet tins. Well worth having. x
Hello all, thanks for all your replies x the attack stressed me out so much I woke up next day with a silent migraine and felt really rough.
I have had Raynauds since my teenage years and diagnosed with limited scleroderma 17 years ago, I am now 57, although I know now that I had the symptoms of scleroderma long before I was diagnosed.
I also have numerous other auto-immune conditions which have accumulated over the years lol!
For my Raynauds I am on losartan and have ILOPROST every 6 months. I have tried nifedipine, Viagra and many other which don't really work. I have been told I have severe Raynauds although my scleroderma is limited to tight skin on my hands Etc., ulcers, oesophageal and bowel problems.
I have about 20 assorted gloves - hand warmers, hot water bottles etc etc. I wear gloves most of the time indoors and always when I go out even in the summer...... However, my hobby is ....... Horse riding and do find it very very difficult in this horrible cold weather and most times I am unable to ride not because of my body temperature I can keep that warm but my fingers unfortunately don't last long .....
To cheer myself up I stay in light the log burner and have my dogs laying next to me - don't know what I would do without them lol! However, I'm afraid chocolate is my downfall and I love green and blacks hot chocolate with a nip of brandy yummy .......
Wonderful day today was able to get out and have a nice hack on Epsom common in the sunshine lol xxxxx
Good to hear your spirits are back up today - I too have managed an hour out in the garden whilst the sun was shining today It felt so good, even if I did have to keep my gloves on !
I think the best thing to remember is that no matter what thermals you have on, unless you have something to warm your hands on, the heat is lost so, so quickly for people like us, you simply cannot rely on layers without additional heat.
I personally use small, throw-away hand heaters - they are very "green" nothing nasty in them - though they take about 10 mins to warm up, once warm they last for abou 8 hours - I LOVE them, and always have a pair in my pcket/handbag etc. They are called "Little Hotties". Even my Rheumy has made a note of them, as I suspect he now recommends them to other Raynauds sufferers. They're like a big, oblong tea bag, so quite easy to slip in your mittens along with your hands.
Here's hoping that the weather keeps getting better, hey ?
Yay Anteater ! great you are not beating yourself up anymore ! I am loving the log fire and your doggies visual ! lucky you ! I literally have to sit on the radiator whilst wearing my eskimo suit sometimes when indoors ! I do not wear gloves in the house but i do seem to spend a lot of my day waiting for the ping of the microwave ! warming up my handwarmers !
I can relate to getting migraines when I get stressed also ! Infact I had to cancel going to my mothers on easter sunday for a family meal as I started with a migraine the night before, hoping to sleep it off, but was popping the migraleve at 5am ! I was fine by the end of the day but I think I stressed myself out worrying about getting cold if I went out! how ridiculous hey ? but I have had enough ulcers and blueness over the years so I suppose I may wrap myself up too much in cotton wool but I really think I have learnt the hard way with the prevention is better than cure conclusion !
I really enjoyed reading eveyone's contribution on the handwarmer accessories and tips ! thanks for sharing everyone x
ew.... good luck with the Iloprost. I cant tolerate it ! my skull feels as though it is being put in a pressure cooker with a horrendous headache ! Im glad you are feeling better ! I have just tuned into 2 hours of dance tunes on the radio so I have got my own party going on with the dress code eskimoesque, Living the dream x
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