Well 3 months after doctors "diagnosis"most people talk about 1 or 2 fingers,all mine go white toes to.Have stopped smoking after 37 years(at least that does'nt go to tax man anymore)cut drinking down,but doctor & ocupational health asked "and how are you coping".When i replied "I STOP IN A LOT"well,top brass of Human recources said you can get heated gel gloves for about 20 quid(they only last 8 hrs)doesn't take much of a clever brain to work out 2pairs a day by 20 quid for 5 days,i would have give them money go work?>/Anyway(i know fair bit of care inwork place stuff to).Am going see different doctor this week.On my last appointment i asked what else we can do and was toldi premusume youve googled it,there isnt a lot we can do,.Fair play HE IS RIGHT.Have noticed it can take me several day's to get over some atacks or doos or whatever they call em.Also seems to change my train of thought when fingers & toes go numb,find dead hard make easy logical decisions.Home,Warm.that is only priority.Spent most of xmas wearing me togg rated socks in me wonzie,with legs & feet in 4 season vango sleaping bag.Always buy wonzie with feet in.So the only thing i can tell anyone WILL make any difference is,!1,Get out of the rat race,move to warmer climate>iot's costing me at min about 210 to250 quid a month on gas & leccy,Bought new calor heater too that was 150 quid with bottle,and,oh,would you like that filling sir.Can not really say as am looking forward to summer,as have suffered in summer too.Stress,Tiredness,Fatigue.Not my fault some clever sod in a suit with agolden handshake three months later decided to move my job so i have get up at 5(used be 6:30)travel for an hour(& didnt hang about either)then work more hours each day worked out in such a way overtime in summer you didn't get because they made 1 day a week an earlier finish to negate the hours,then do DOUBLE the work load we did before for LESS money than before.So in summer my lady never saw me as iwould come in 5,5:30ish,sit down ,fall sleep,wake up,go bed,get up go work.No tea,suppper,sometimes i was that shattered by wed,no breckie till we called somewher lateron.was just that f---ed.Oh,can any one let me know if memory loss is apart of it,would ask my doctor but i havn't googled it for him yet...TILL next time.GOOD HEALTH.
So Many Questions.....: Well 3 months... - Scleroderma & Ray...
So Many Questions.....
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Oh ho, you're among people with the same problems here. I think most of us here have it tough. In fact... I don't know anyone that it affects only two fingers. That's just a myth that the doctors tell us, giving us false hope that it won't get worse. *shakes fist in the general direction of doctors in faux rage*. The smoking is a good thing to stop, though the alcohol you don't have to cut out completely ^-^. Nor the tea actually, in fact keep up the tea drinking.
Stopping in a lot is something, I'm sorry to say, you're gonna hafta get used to. I recommend playing on games such as Skyrim or other Epic RPG's to get the sense of being outdoors without being outdoors *whistles innocently*. There are things called "Little Hotties" which you can buy forty pairs for around forty pounds. They last for a few hours themselves, though they have their pros and cons I highly recommend them. Now, combine them with some silver threaded gloves (from the RSA) and some fingerless/mitten things and you have toasty warm hands for a while ^_^. I'm sure there are microwavable versions of those gloves out there somewhere!
We call these attacks the "Fallen fury of freezing hell hands" ...I'm just kidding, it's generally just 'attacks' or even "AAAAARRRRGGGHHHH" if we're feeling energetic about it :p. Personally I find it more distracting walking around with a blue nose, I just can't stop looking at it but the numbed or painful version of the attack can also be hugely distracting as well. Though for me, less of a distraction and more of, "Eh...why aren't my fingers typing?...ahhhhh yeah.."
There's the hot water bottle company which I highly recommend. I'm right now sitting with three hot water bottles, in multiple layers of clothing, in a sleeping bag trying and failing to keep the blood circulating to my toes and hands. I also have a halogen heater but that's on a timer because I can't afford the electric XD.
Anywhere south, it doesn't need to be overly warmer, but when you move south of Gloucestershire, the temperature stays a little more constant. I'm trying to get back to Devon personally, I know that it's warmer there. Of course my doctor advises India but I'm not a huge fan of curry.
£250??? A MONTH?? What are you trying to heat? A bat cave? Think less about heating the whole home and just parts of it. Also if you can keep your heating on all the time (if you're going to heat the whole house) that's what you'll need to do and just drop the temp a little rather than turn it off when you're not using it, it seems backward logic but its to do with energy required to get something warm again. Me personally, I only use or or two rooms so those are the only rooms are try to heat/keep warm. I don't have that much money to spend on gas and electric. Try not to use the LPG gas the home piped gas is far cheaper. If you don't have that, stick to the electric heaters.
Memory loss is not actually a part of Raynauds. At least not directly. You are far over stressed. You should consider DLA if at all possible. If you don't, the stress is probably going to kill you (i'm not sure if I mean this in the metaphorical or the literal sense). Have you thought about looking for work closer to home? Pull a sickie...contrary to common belief, I'm pretty sure you're entitled to it. Talk to your wife and see what she says.
Oh yeah and good move getting in touch with this blog! There are many users here that have far more experience than I do with Raynaud's. Come back soon!
I find very hot baths are good when I get so cold nothing else will heat me up. All my fingers and toes go numb and when I go to the gym it takes me about 20 minutes on the cross trainer till I get my circulation going again (and that's with wearing gloves) and two pairs of socks. Roll on summer ...and if anyone else tells me it's 35 degrees in Sydney, Australia now, I'll scream. Emigration seems very tempting at the moment.
Are you taking any prescribed medication for this, if not i would certainly recommend you go back to have a chat with your doc about this. Meds won't cure you but I find that nipedine helps me. Well done for packing smoking up, I did the same 7 yrs back, best thing I have done.
Hello, I have had Raynauds since I was a teenager I am now 57. It is a really painful and annoying condition. Raynauds does not cause fatigue but if it is secondary to another condition such as Systemic Scleroderma, which I have, then stress tiredness and fatigue will be part of it. There are numerous medications out there to try but your GP will probably try Nifedipine first. However, there are side effects with this but people react differently, it suits some but not others.
I would suggest that you asked your GP to refer you to a rheumatologist so that more test can be done.
Good luck
Hi, I agree wtih everything Anteater says: and, funnily enough I've had Raynauds since I was a teneager and will be 57 this Friday. I have limited cutaneous systemic sclerois and, yes, stress, tiren
dness and fatigue are part of that so do ask your GP to refer you to at best rule out anything else or, at worst, confirm that you have another connective tissue disorder. With my limited scleroderma I get something they used to call 'cognitive fog' (don't know what they call it now but know the name changed) and when that strikes I have trouble figuring out how to do even the simplest of things ... stuff that I'd normally do without a thought - it's horrid .. I bless the days when my brain is working how it used to.
I take Nifedipine timed release and that helps a lot. I'm lucky in that I live in a mid-terrace house and have elderly neighbours either side who are at home and keep themselves warm! I pay 47 a month for my utlities, BUT, if I wasn't working I expect that would increase somewhat, though when I am at home I try not to use my heating much more but layer up with thermal underwear and the fleeces plus use hot water bottles (when really cold) + fingerless sliver gloves, they help me no end.
Keep pluggin away with the GP, don't be afraid to 'make a nuisance of yourself' you want the best attention / treatment you can get.
Best of luck.