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Reynaud’s Syndrome / Disease in Hands and Feet (Triggered by cold) – Self Help Measures - Discussion Please

Ernest2 profile image
32 Replies

Hello Everybody,

I'm new to SRUK but not to HU, nor Reynaud's and wanted to share the following thoughts on Reynaud's self help measures (no drugs). I've had mild Reynaud's in the hands for over 10 years, and then worse in the feet and hands since Chemo for Leukaemia 1st line treatment in 2015.

N.B. The following notes record what has helped me with Raynaud’s (Probably Primary Reynaud’s) in the hands and feet triggered by cold when the body core temperature gets low. Always first consult your clinical team for proper investigation and advice before continuing with self-help measures, there could be other related significant health issues to investigate (typically auto-immune conditions).

Note also there are potential fire and other safety issues with some of the following ideas, so responsibility for all safety aspects is with the reader. Please take care and stay safe, and experiment first in a non-critical safe situation.

1.The title of the condition “Reynaud’s Syndrome” is somewhat confusing, because whilst there does appear to be a definite physical condition, staying calm may help prevent attacks, so practice that when there is opportunity, and try to think your way out of an attack situation (Look around at what could be used to help keep/get warm. Keep calm and start moving, fingers, toes, arms, legs . . . )

2.Keep a record of the minimum temperature(s) you get attacks at for different situations / clothing levels, and keep a note for the futurer. Consider the levels of clothing you need for different ambient temperatures.

3.Never put on cold shoes when heading outdoors, or coming indoors. Always preheat shoes either by placing above (not on) a radiator (not an electric radiator) or heating the shoe insides carefully with a hairdryer. Be careful if using a hairdryer to make sure there is sufficient airflow for the hot air to exit the shoes and not to overheat the hairdryer. If possible, open up the shoes (e.g. ease the laces and pull back the tongue) and don’t put the dryer nozzle into the shoe, just point the hot airflow into the shoe, and mind any fingers holding the shoe. Hold the shoe with toes uppermost (hot air rises). Also turning the dryer down to a lower setting may help if overheating is a problem. Note good hairdryers will have a thermal cutout, so if that does trip then the technique needs adjusting in order not to overheat the dryer, after first waiting for it to cool-down and reset (usually automatic). Switch off the dryer at the mains when complete and put the hot dryer somewhere the nozzle won’t melt/burn anything (e.g. an old mug). Gloves can be warmed on a radiator (non-electric).

4.If a fanheater is used to warm shoes never leave it unattended, and beware with glued shoes the glue may melt and shoes come apart, so a hairdryer heating the insides is a better option and gets the heat where it is required faster.

5.Buy chemical heat packs in bulk via the internet. Follow the instructions, note all safety points, and experiment before using in action. Most are designed for socks to be worn and the pack is stuck to the insides of the shoe, NOT to the skin. Refer to the instructions. Some chemical heat packs may require a little warming to get them started e.g. place on warm radiator / heat gently with a hairdryer. A little gentle shaking of the pack will also help get them started up. One important point, if you are also heating the shoes with a hairdryer do that before you fit the chem heatpacks otherwise you can overheat the packs and make them balloon out, making things tricky and uncomfortable.

6.Gloves can be bought with pockets on the back of the hand for inserting chemical heat packs. If using for driving or cycling make sure the fingers have sufficient grip. Lobster style gloves pair the fingers for reduced heat loss, but grip can be an issue with some makes.

7.Make sure footwear and gloves are not too tight, and do not restrict movement. Also make sure clothing is not too tight when layering up. Gently wriggling fingers and toes can be a useful technique to keep the circulation working, and avoiding Reynaud’s attacks. If have to stand on the spot, alternately raising the heels off the ground, and lifting the arms will helps generate heat and keep the circulation moving. Explain to anyone talking to you that you have Reynaud’s to help understanding and raise awareness. They may tell you something useful.

8.Beware of the fire risk of microwavable heat packs. Also these probably won’t stay warm long.

9.Make sure if feet overheat that there will be opportunity to remove heat packs from shoes e.g. take care if driving on the motorway (experiment first in the expected conditions)

10.If e.g. working outside using chemical heatpacks, then go inside a warm building e.g. for lunch and the shoes are removed, insert lightly scrunched kitchen foil into the shoes over chemical heatpacks in order to preserve them for later use. This helps limit the airflow to the packs whilst allowing the heat out, to help shut them down whilst not in use. Similarly heat pack inserts for gloves can be removed and wrapped in foil to help cool and preserve for later use.

11.Be careful some (otherwise good) chemical heatpacks can be fairly fragile so don’t attempt to unpeel them from say a set of boots, to fit to a pair of shoes, as they may well tear in the process (Best not stick them in to the first pair of footwear for that scenario)

12.Ideally buy a car with heated seats. If that is not possible then warm a towel in the house e.g. on a radiator (not an electric radiator, unless its intended function is an electric towel rail)

13.If have to use a car then a modern small engine Petrol engine is likely to give the fastest warm up. Avoid Diesel cars, particularly older models with slow warm up.

14.For extreme conditions consider investing in snow boots but be aware these may affect your mobility, and are probably not suitable to drive in depending on the boots and the size of the vehicle pedals.

15.If visiting another house, and taking indoor shoes/slippers with you, store them inside your clothing to keep them warm, to avoid temperature shock on changing shoes. Warm up first to let the core body temperature elevate, before changing shoes.

16.Note if cycling or brisk walking that (unlike driving) this helps elevate the core body temperature so Reynaud’s attacks may be less likely than you might think compared to a cold car. Consider if cycling what to do if a puncture occurs (Carrying chemical heat packs and warmer boots may be sensible)

17.Wear layered clothing outdoors, or when driving and if get too hot then consider beforehand where stops can be made to remove layers. Heat exhaustion can be an issue with Reynaud’s if you have to be dressed for the outside, then enter warm buildings, and don’t have anywhere to store the extra layers of clothing whilst indoors. Plan ahead.

18.To help maintain the core body temperature, wear full thermal underwear, and use several layers. Buy a larger size for the second layer so as not to restrict mobility.

19.If working on cold objects outside e.g. doing basic checks routine weekly servicing on a car, or refuelling, then touching e.g. cold metal can be a big issue. For this kind of job, start the task with warm hands (and warm body), and wear thin vinyl gloves with chemical heat packs stuffed inside. Take regular breaks to warm the hands, and body. Don’t try and rush and finish the job if you are getting cold. If using a fan heater for warming up, make sure to turn off/ unplug when complete. Consider selling your car and sharing to reduce the maintenance overhead. N.B. If latex gloves are used instead of vinyl make sure you are not sensitive to latex. If vinyl gloves are used and not damaged, the insides can be re-talced for re-use. If working on sharp objects, take care and two pairs may be required. Consider also thicker gloves appropriate to the dangers of the task (refer elsewhere for appropriate advice – the wrong gloves can themselves be dangerous in some situations)

20.If cold working, keep a bucket of warm water handy for warming the hands if possible, or work where there is nearby access to a warm water tap. Take regular breaks to warm up the whole body. (This is the opposite technique to summer-time heatstroke where putting the hands in a bucket of cold water is an effective means of quickly cooling down)

21.If appropriate for work (and considering the economics) consider electrically heated shoe insoles, but bear in mind the expense, and that these may not be as reliable/foolproof as chemical heat packs. Any flimsy wires may be easily damaged and any strap on battery packs could either get damaged or cause injury to the ankles when accidentally caught on fixed objects. Any with batteries actually in the soles may be subject to flexing and fire risk, so consider store in fireproof container. The big advantage of this approach is the ability to switch off the packs when entering a building, so for a well paying job may be the right solution.

22.Be patient and stay calm (easy to say) when executing your self help measures. Work out what works for you. If start getting an attack then start wriggling the fingers/toes and moving around whilst identifying a suitable source of heat and/or better/extra clothing. Keep wiggling because attacks can sometimes be delayed and/or reoccur when you think your fingers/toes have turned a nice shade of red from the original white.

23.When you have worked out a plan, discuss it with your doctor so they can review whether medication might be a better alternative, and/or what other checks should be made.

Please let me know any errors / ideas etc. to improve on the above. You can guess from reading the above some of the mistakes I’ve made.

And many thanks to SRUK for hosting this item, that relates to Reynaud’s.

Wishing you all well, and making yourself the best of luck to avoid Reynaud’s

Ernest

P.S. Picture: Home made shoe and boot rack that I made taller so the boots/shoes for warming can sit on the top overhanging the radiator (The shoe toes are a couple of inches above the top of the radiator you can see). Of course the heating needs to be on, and you need to remember to put your next pair of shoes there. So I use a quick blast from a hairdryer when I get that wrong, then fit chem heatpacks if the cold requires, and I'm going outside for significant length of time.

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Ernest2 profile image
Ernest2
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32 Replies
honeybug profile image
honeybug

Thank you Ernest2

for this very in-depth compilation of self help instructions.

Very well done. 👏👏👏

I love the idea of keeping notes...that is invaluable to show the doctors involved in your care.

There are 2 self help things I’ve done I don’t believe I read in your compilation:

To help keep your core warm you can wear (what we call here in the USA 🇺🇸 )a vest that is used in hunting it doesn’t have arms, and has a zipper front for easy on/off access.

The other is an electric blanket for your bed.

Again thank you for this helpful post.

EvaJo 😊🌿🌸🦋🙏🤗💗😘🕊

foxglove profile image
foxglove in reply tohoneybug

Hi I am in uk, do you know if hunting vest can be got here? also what is it called and I can do a Google search. Thanks

honeybug profile image
honeybug in reply tofoxglove

Hi foxglove

You can google

Amazon.com/womens outerwear vests

They have multiple price ranges styles and colors

Best wishes on finding one that will work for you

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

foxglove profile image
foxglove in reply tohoneybug

Much thanks, think Ernest had the answer with the uk term usually body warmer or gillet. Will head to Amazon got to be something that helps, also I'm on blood pressure meds. which doesn't help

honeybug profile image
honeybug in reply tofoxglove

The BP meds will cause Raynauds symptoms in people w/o it. So if we have it already it compounds the issue.

I just looked up the vests and gave you what it said here. I’m not sure if the names are changed per country or not but wish you good luck getting one.

Take care dear.

EJ. 😊🌿🌸🦋🙏🤗💗😘🕊

foxglove profile image
foxglove in reply tohoneybug

Haven't found vest ,but have found a reasonably priced parka that I have been tempted to! I keep meaning to see dr. re meds. but it's such a performance getting appt. so just suffering and whinging mean time and willing warmer weather!

You too take care - love the user name.

honeybug profile image
honeybug in reply tofoxglove

Would

You like me to look up vest on amazon for you??

Size and color. Allergies if any and price range.

foxglove profile image
foxglove in reply tohoneybug

Kind offer I appreciate but will get of my butt and check local shops of which there are plenty. Hope it's warmer where you are - wrap up well

Ernest2 profile image
Ernest2 in reply tohoneybug

Yes my layers do include one of those.

In UK it would perhaps be called a bodywarmer on (French I guess) a Gillet.

Something like:

amazon.co.uk/dp/B07FB1HGFG/...

Plenty of jackets with arms to go with that.

Ernest

honeybug profile image
honeybug in reply toErnest2

Thank you Ernest

Yes that is great info.

I do much better if my core is kept warm.

Many heart and blood pressure meds are designed to pull away blood flow from our limbs to the torso to feed the needs of the internal organs which creates complications with our Raynauds.

Wishing you the best Ernest.

EJ x

phubley profile image
phubley

Thank you Ernest. Very informative. Well done!

Smileyicon profile image
Smileyicon

Hi Ernest2,

That was really informative, thank you. I'll give them all a try. I bought a pair of lithium battery heated gloves last year and they come in very handy (excuse the unintentional pun) when I need an instant warm up. You can find these online under electrically heated biker or ski gloves.

Cheers!

Ernest2 profile image
Ernest2 in reply toSmileyicon

I think that's good advice.

You do have to look at the economics of it all and a winters worth of heatpacks isn't cheap.

In my case the feet are the biggest problem. I have seen review of electric insoles on:

raynauds.org/

Can't remember how I got to following (I think there are other similar products):

raynauds.org/tag/heated-ins...

I'm a bit concerned though if the batteries are in the sole about flexing and fire risk.

I do need to consider the economics though.

Also with electric you can switch off when it get's too hot.

Ernest

Smileyicon profile image
Smileyicon in reply toErnest2

Hi Ernest,

I forgot to mention that the lithium batteries are rechargeable overnight. Although, I bought mine on the Internet and you may need to include an adapter.

All the best,

Smileyicon.

Patches2 profile image
Patches2

Thank you Ernest for your informative post. It is very helpful for me. I suffer from ice cold feet and apart from putting them on a hot water bottle I cannot heat them up.

Could you possibly tell me if the chemical heat packs you mention will fit inside normal shoes? How do they work, I.e. how does one heat them.What are they called and where available.

Many thanks again.

Ernest2 profile image
Ernest2

I'll send you a PM with the order info. We don't want HU to become an advertising portal because you would then find you wouldn't get the best (and impartial) info.

They do fit inside normal shoes and the design is to stick to the insoles under your toes. Experiment with the position though. I have high arches so put them in that area where they are easy to fit for me (and remove). There is peel off backing to expose the adhesive - I just peel half of the backing off so they are easier to remove at the end of the day.

They come each sealed in a plastic packet. Opening that lets air in through the paper top side and starts a chemical reaction (the packs contain Iron and Carbon compounds and will make a mess if you accidentally split the pack, so remove it carefully when finished). The only way to turn them off is to restrict the flow of air and cool the pack - hence why I use foil. To get the reaction going if you are in a hurry (likely to be the case) then put them on a radiator for a minute or so or heat with a hairdryer gets the reaction started faster (The hotter it gets the faster the reaction, generating more heat). So don't leave them too long (by getting distracted) before fitting to your shoes, and then putting the shoes on (slowing the airflow) or they can get too hot (Make sure if you go inside or drive a warm car that you can take the shoes off if they get too hot). Practice makes perfect. I've never bought a bad batch but other than that they are pretty foolproof (no wires, flat batteries etc.

Please ask me if I'm not making sense, and the very best of luck.

P.S. The hand version you can buy from a well known car accessory shop but they no-longer sell the feet version (and the hand one is too bulky to fit in your shoes, and no adhesive to hold in place)

Ernest

Patches2 profile image
Patches2 in reply toErnest2

Delighted with your information re the foot warmers. I have ordered them from the Amazon link you sent me. Although I live in Ireland I regularly order from Amazon UK. I ordered the largest box they had! Although with Brexit down the line duty may have to be paid so I don’t know when ordering from the UK what it entails. Anyway I got in my first large order and can’t wait for delivery. Strangely I don’t have cold hands. Better not speak too soon.

Many thanks again. You are a life saver!

Patches2 profile image
Patches2 in reply toErnest2

You will be pleased to know that I received the foot heat pads in the mail yesterday Ernest. I started to use them today and put them in my shoes at 9.30. It is now almost 4.30 and they are still a little warm.

It is the first time in my life (now 75!) that I have had warm feet.

Your original post and the replies it generated are so helpful to me. I have had all the tests for Raynauds and they were negative, but I have all the symptoms.

Once again, many thanks. I have saved this complete post so that I can refer to it at later stages.

Stay well. Patches

Ernest2 profile image
Ernest2 in reply toPatches2

Thanks Patches for the feedback.

I think if you have the symptoms for Reynaud's then you have Reynaud's (for my way of thinking)

It is good though if you don't have anything else associated with the Reynauds.

Hope you can get out and about easier now.

Best wishes,

Ernest

Ernest2 profile image
Ernest2

Just done an edit to item 5. above. if you heat with a hairdryer, and fit chem heatpacks then the order is important. Suggest;

1. preheat the chem heatpacks either on a radiator or gently with a hairdryer

2. Heat the shoes with the hairdryer

3. Fit the chem heatpacks to the shoes

If items 2 and 3 are reversed then you can overheat the packs and make them balloon out, making things tricky and uncomfortable.

Apologies for any confusion caused.

Ernest

volvox45 profile image
volvox45

I don't think anyone has mentioned HotRox hand warmers (look online). They fit in the palm of your hand, cost about £22 each, are rechargeable and last over 5 hours (I know because I left them switched on in my coat pockets yesterday and when I remembered they were still hot. So were my pockets!) I've had them for years and they're invaluable.

Also no one mentions getting Raynauds indoors while doing innocent things like taking something out of the fridge or peeling potatoes or just no reason at all. Drives me crazy.

volvox45 profile image
volvox45 in reply tovolvox45

... also hold your hands in warm water for two minutes before you go out in winter, then immediately put your gloves on.

bearman profile image
bearman

I use self warming insoles available from SRUK, Have had my first pair 2 years and they're still going strong. Am gradually asking for more as presents so that I don't have to move them around. They are less hassle than electric ones, and much cheaper.

For household tasks like going to he fridge, I keep a pair of cotton gloves on the radiator, warm whenever I need them

Ernest2 profile image
Ernest2 in reply tobearman

Many thanks Bearman

How do they work please, and how long do they last.

Enerst

bearman profile image
bearman in reply toErnest2

From watching last years Royal Institution Christmas lectures I think the pressure of your weight on the insoles creates and electric impulse which warms them up with the same amount of heat as a AA battery. On the programme they had a mat which when anyone walked over it lit a small bulb. Best I can come up with. They last ages I've had my first pair for about 2 years and they're still going strong. They cost about £24.

Ernest2 profile image
Ernest2 in reply tobearman

Hmmm - piezoelectric ?

en.wikipedia.org/wiki/Piezo...

Used for e.g. electronic buzzers previously.

Impressive that you can get enough power to gen heat but that's a real neat idea.

I guess this is the item:

srukshop.co.uk/astec-self-w...

Or:

srukshop.co.uk/astec-self-w...

Price looks reasonable so I'm going to try some of these.

Many thanks

Ernest

Susiiscute profile image
Susiiscute

I’m trying to be more organised about Raynaud’s when leaving the house. I just bought new wind proof gloves for driving, also bought a sensible cross body bag with lots of pockets, for easy access to keys, purse etc, so I don’t have to remove my gloves and fumble in a large bag, looking for things, which is always fatal in a supermarket. I wear warmed gloves in the gym, so I don’t have to touch cold weights.

Ernest2 profile image
Ernest2

Hi Susi,

Good thinking, I do have trouble with keys e.g. Try to unlock the car from inside the house (and get out before it locks itself again . . . )

Best wishes,

Ernest

NewbieAP profile image
NewbieAP

Great list, thank you! This week I bought neoprene toe warmers (they're kind of like partial socks that just cover your toes and up to your arch). I ordered two pairs online for maybe $12 and they had gotten good reviews from other people with Raynaud's. I wore them yesterday and really like them. My Raynaud's mostly affects my feet, causing my toes to feel cold almost all the time these days, even when inside wearing slippers and wool socks. I also ordered sheepskin insoles and will try buying crocs-type shoes to wear them in as house shoes (attractive, I know). It's hard for me to find slippers that are both warm and that have arch support, without paying $150.

Trishanne67 profile image
Trishanne67

I got some good ideas ! Thank you Ernest

Ernest2 profile image
Ernest2 in reply toTrishanne67

Great. Let us know how you get on, and what you find works.

Best Wishes

Ernest

Amymatney profile image
Amymatney

I have it I just found out a few weeks ago my finger was blue now has turned black and died I dnt want to lose my finger what can I do

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