I have Raynaud’s and my partner is worried about me that he was able to even get heated blanket. Our energy supplier is sending it to its clients apparently. Anyway, i want to ask you. How do you deal with this constant worry of can turn on heating and keep myself warm? So far we handle this current situation of bills situation even tho it is rising like hell those bills Inc. rent what went up 15% . Do you have any advice how to cope with this constant worry of how to keep warm and not to pay high bills?
I don’t know if this subject belongs here and sorry if not. Thank you
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MichalIn
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Yes I have same worry. Bought an electric blanket a few years ago and keep it on lowest setting when I’m home as quite homebound with gut scleroderma and still mostly shielding due to immunesuppression. Got very old draughty house waiting for internal glazing -turning heating on fairly pointless until this is done and then that’s last of our savings gone. Not sure how we will manage but have weighted blanket on cozy bed and just walk around house like Michelin man head back to bed with my work after chores or short walks.
I believe the CEO of SRUK has written to the government about getting help with energy bills for people with Raynaud’s.
I am glad it is not only me. I am sorry to hear your difficulties. We are in fairly good insulated flat and we did not need to heat much. But we used Dyson heater sometimes to heat for a bit. However, this winter seems colder and we might use heating and our electric blanket. Well, we do use it already for the evening.
I didn’t know that CEO has written to government. I am really glad someone is trying to do something for as. My partner was saying we should be consider as vulnerable people especially during winter time. Let’s see how that is going to work and if government will respond.
This worry just hit me today. I got pain yesterday evening and was difficult fall asleep and I just started to think about how our bills goes up and how people with worse situation and Raynaud’s needs to keep warm and I must keep warm. How are we going to afford it?
I completely agree. As a long term sufferer of this disease. I’m in constant worry and stress. Any slight chill or temperature change in the air around will then make my fingers lose circulation. There’s no help for us. In regards to this. Unless we are in benefits. I feel your pain. I’ve found that not a lot helps in over the years of battling a this. I’m now 43 and had this since I was 16. By the time February comes my hands are stiff as they have died numerous times. They become tight. Just wish someone would make it a disability
Has your doctor not prescribed you a vasodilator? This is a medication that causes the blood vessels to open wider and improves blood flow. It doesn’t really stop attacks but does stop them being so severe.
Unfortunately 5% of the general population suffer from Raynauds so it’s unlikely to be classed as a disability any time soon. I’m 50 and have suffered since my early teens like you (scleroderma diagnosed at 31). All we can do is try and avoid situations that trigger episodes or if the weather is bad dress up against it. Stay cosy 🤗
Wear lots of layers, good thermal long sleeved vest as a base layer then a couple of other loose layers on top of that. Leggings or thermal long johns under jogging bottoms are cosy. Wear fingerless gloves as much as possible. Also layer up socks. I have a base layer sock, either bamboo or cotton then thicker wool sock on top. Move as much as possible as it’s our muscles contacting that’s generates most body heat plus movement helps pump the blood around the body. If your home is very cold or drafty wear a hat. I quite often look like an eskimo 😆
Is your raynauds primary (not associated with an autoimmune disorder) or is it secondary ( you have been diagnosed with an autoimmune disorder). If it’s secondary you should be able to contact your electric company with regards registering as having a condition so if there is a power cut they know you are a priority. You may also be able to get help financially via benefits to help with costs. Stay cosy 🤗
Just had the first energy bill, without the help it would have been £470. I have had the heating on ,but after the bill came hubby switched it off! That night it was 16c in the hall. I was shivering that much I had to get up and put my fleecy bath robe and get back into bed. Yes I do think it should be classed as a disability. You can't do anything when your fingers are dead, people just don't understand. I have to peel my veg in warm water. I have about 5 layers on when I go to work. I do dread the winter now, knowing that the heat cannot be on as long as it used to be. Hubby retires next August, planning to put a wood burner in, so we don't have to put the heat on during the day.
lowicklady55, we are retired and spend a lot of time and home. It is really hard to know how to manage. We weren't too bad during most of November but now the temperatures are dropping it gets cold in the day time. We did receive extra payment from the government which helps.
I do have a plea if you get a wood burner, please buy one with a filter as I have asthma and my neighbours one (which doesn't have a filter) brings it on. His father has a farm nearby so they get plenty of free wood and I have real problems going out in the garden, to the bins or opening windows. Hope you don't mind my asking, thanks.
I have mine on 24/7 as I too have reynauds, Lupus, athritis etc etc, my attitude is they will have to throw me in prison if i cant pay, then see how headlines in papers say' disabled elderly lady, thrown in prison for not paying energy bills!
There is advice out there about trying to keep energy bills down not just by turning heating down or off, such as turning off appliances when not in use. My husband was surprised that leaving the microwave still switched on at the plug with light showing uses electricity.
The government web site has a list of all the support available money wise including on utilities etc - helpforhouseholds.campaign....
I am on disability benefits (for other health issues as well) so have some additional payment. If you don't have open plan heating one room can help too. I use a hot water bottle at night for my feet!
It is really hard for many of us with health issues.
The only thing left switched on is the fridge freezer. Interesting , I was going to apply for the Priority register. Mine is secondary to overlap of lupus/ systemic sclerosis. Also have IPF mild, nowhere near as bad as most sufferers and Sjorgens. We have always switched off all appliances. No red dots in this house.
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Energy boost for fatigue 
Another Heated Glove post 
This one is about keeping the home warm enough.
How do you keep your feet warm to mitigate the effects of Raynaud's?
