Hi All,
My wife has just been diagnosed with raynauds by the doctor ... her hands get so cold they hurt and so do her feet
How do you all manage it in the colder months?... tips, tricks, products
We've suspected she had it for a while but it's gotten worse and painful when she warms up.
Shes against being on blood pressure medication although the doctor said she could do it seasonally to help the condition... she also said that was the only treatment (although I'm not buying that)
Starting with the basics:
Layer up - lots of thin, ideally wool-based tops, longjohns, socks and of course gloves.
Keep the core warm - Raynauds people often have lower core body temperature, plus it can fluctuate wildly. We feel the cold much more quickly than the rest of the human race so it’s not JUST about the extremities. I’m still in 2 pairs of longjohns under my trousers! I swear by Ice Breaker merino layers and liner gloves expensive but you can layer up without getting g too bulky, and surprisingly long lasting
Keep the main blood vessels leading to extremities warm - so ankles, wrists and chest too. And head
Keep a steady temperature throughout the environment she’s in. We’re told to heat only the room we’re using, to save money and energy. But then going into a colder room to make a meal or go to the loo etc triggers an attack. So a steady temperature throughout the home is better.
Make sure she puts hats and gloves etc onto a warm body before she opens the door to go out. Trap the warmth in!
Then there are a variety of heated things. You can search ‘heated glove’ on here and get suggestions. I use Hot Rocks rechargeable hand warmers to have in pockets or mittens, some rechargeable heated ski mittens for when I’m out hiking (lovely and toasty) and rechargeable liner gloves and a heated gilet, both from Blazewear. And for years I’ve found having a hand muff on a cord round my neck gives me a warmed cocoon that I can just quickly whip a hand out to open the boor or pay for something. And a variety of thin liner gloves, lined leather gloves, wind stopped gloves - depending on the weather, time of year and activity
Apple Pay on my phone, activated by a double click on the side button and face recognition means I don’t have to get my hands out almost ever now!
keep hands and feet dry (as wet = cold) and protected from the slightest breeze things like gardening and making food are hardest for me - fingers having to meddle in things that are always cold, wet or both.
One last thing - forget fashion and embrace looking after herself!
I do all of that and STILL take nifedipine Sept-May and more recently losartan year round (increasing in the coldest month). I used to think it made no difference but I didn’t want to go against the doctor. But once I started the losartan-nifedipine combo I realised the winters were not quite so hard. Slow release is important! The nifedipine especially gives me headaches when I restart it each year, but the body adjusts after a few days/ a week.
Hope that helps with some pointers. I’ve had Raynauds for about 30 years. These are my best tips!
She should try to get a referral to a rheumatology consultant and have iloptrost infusions.
What are they? What do they do?
The infusions dilate the blood vessels so in theory they should be warmer as the blood can flow through.
Thank you I will tell her about that.
Thank you very much for this, I will pass it on.
I take niacin which seems to help
I came to say heated gloves, hand warmers, Heat holder socks, nifedipine but LadyTrundle seems to have said it all! I would definitely back up her advice.
Is her Raynauds primary or secondary? Secondary raynauds is associated with autoimmune diseases such as scleroderma and lupus. Primary Raynauds is a stand alone condition (with no other symptoms). Primary raynauds is very common within the general population but it’s painful and can interfere with everyday activities severely. If her raynauds is primary it is unlikely that she will get referred to an rheumatologist for iloprost, which is a vasodilator anyway. It’s just administered in hospital via an infusion/drip. Unfortunately vasodilators ( they dilate and open the blood vessels) are one of the only medications for Raynauds. Their primary use is to lower blood pressure. As they dilate the blood vessels they help Raynauds symptoms and help alleviate the severity of attacks. Raynauds is a vasoconstriction problem.
Some people find fluoxetine ( Prozac) helps but that’s an antidepressant so personally I’d rather take the vasodilator than that, unless of course you have depression and need it.
I’ve had secondary raynauds associated with scleroderma for 22 years and have only ever managed it with vasodilators (Nifedipine). I tend to only take it seasonally although this year has been a long winter. They do cause headaches, flushing and sometimes nausea/ lightheartedness for a few days when you start taking them so it’s best to take the first dose before going to bed along with some paracetamol.
Agree with LadyTrundle with regards all her advice on keeping core temperature up using layers, gloves and hand/feet warmers etc. I have shearling lined boots for the winter months along with merino wool hiking socks. Try to avoid all triggers. Air conditioning is a major issue for me and drafts/wind. Hate the chiller isle in the supermarket. You learn to adapt. Unfortunately there is no cure (at the moment anyway) so it’s an adapt to overcome situation. Best wishes to your wife. You’ll find this forum very informative and supportive.
Thank you
Sorry I meant to also reply to your question.. but forgot... my partner has no other health conditions (apart from PCOS) so this is probably primary from what you say above?
That’s great, glad she has no other symptoms. I understand her concern about taking medication but if she needs it it’s worth a shot. Hopefully the weather will get better soon and we will all get some respite from it. It’s a horrible affliction.
I’ve just googled PCOS and raynauds and found an article suggesting oestrogen may have an influence on raynauds. They think that’s why it maybe more common in women of childbearing age! I’m afraid it won’t let me upload the link but it’s from Raynauds News. ‘ Estrogen likely contributes to cold induced Raynauds in women’ is the article title. Maybe worth a read.
I take nifedipine for secondary Reynauds. I saw a rheumatologist who claimed that a bout of covid is the cause of mine but I have my doubts. I develop chillblains on my feet and fingers in winter and find thatNifedipine does help with this but doesn't get rid of it completely. I only take it when the wether is cold.
My hands are very painful when in water when they erupt. I use rubber gloves and those dish washing thingies with handles and they help. Strangely, I also find that when I am in the warm, placing my hands on something cold helps with the pain. I use the leather on my sofa.
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