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.
Red itchy lumps and blisters following an attack
Extremities freezing, overheating core!
General rant about air conditioning !!!
Private or NHS diagnosis? Due to IVF.
