too much pain to write? help pls!! mu... - Scleroderma & Ray...
too much pain to write? help pls!! much appreciated
Ooo I can offer a hug and warm gloves. Not much use but as they say it's the thought that counts.
Bless you.....make an appointment to see your GP,..... whilst you are waiting for an appointment take some mild analgesia and keep yourself warm.....your GP may need to refer you back to your rheumatologist.....I really feel for you.....take care.......warm hugs xx
ok thanks, although, i havent had an appointment with the rheumatologist at all yet, im still waiting for a reply!! thanks 
I am so sorry you are having such a painful time. I know just how you feel as my hands are continuously painful and my right one is full of calcinosis which makes everything really difficult to do. I am due to see my rheumotogist next week but not sure if there is anything new they can do. In the meantime try to keep positive and know that there are lots of people out there thinking and praying for you and really understand what you are going through. Lots of love and hugs xxxx
thanks xx
I have this problem myself and frequently, meaning that typing can be an absolute chore to undertake. Most of the time you can get away with not writing. Apart from signing your name of course but most of the time this can be excused.
Now, as for computer usage, you're probably going to need foam pads on the keys (depending on how good your keyboard is) to reduce the pressure on your fingers. Secondly, you should opt to reduce the amount of time using the keyboard by using Voice Recognition Software. Dragon is probably the only affordable decent option at the moment and works for a variety of operating systems.
Some operating systems can be controlled via the voice and if you're up to experimenting, you can try the beta applications that use the Kinect in order to implement a 'gesture' based interface (think: tom cruise). The more you can do with your voice the less you will have to put pressure through your fingers.
Now, we need to stop your fingers getting cold, or attacks being triggered. It's rather useless covering the fingers. You can't keep heat in, if there is no heat present. Instead what you can do, is wear fingerless gloves £3 from asda per pair, I highly advise them. The silver gloves from the RSA may give you a certain level of defence but as far as I can personally tell, there's no observable difference between George fingerless gloves and RSA fingerless gloves with silver. I find that if I wear the RSA full finger gloves, my hands will freeze within the hour. Thing about wearing thermal base layers as well. They're not the most attractive things in the world nor are they the most heavy. However they keep a remarkable level of heat close to your body and help your body circulate effectively by slowing down dissipation.
It is possible to keep your fingers warm artificially by using those Zippo Warmers... I highly recommend them. I do not recommend MyCoal or the alternatives. They don't provide nearly enough heat. Wash your hands thoroughly (according to Hygiene practices, the technique is good at keeping blood pumping rather than just rubbing the hands together) in warm water and frequently before towelling off and replacing gloves.
Secondly... if you are having multiple attacks a day and your hands are rendered either numb or too painful to do anything with, you may very well be entitled to Employment and Support Allowance. Most jobs require your hands to be operational and you're not going to be employed very long without them.
Seems like not being able to do things with your hands is a common feature of Raynauds...
unfortunately, im still at school, so missing out writing doesnt really apply. i might try and teach myself to write with both hands though.... luckily, our computer is broken so i never use it, i only use the school one, and that is only for an hour each thursday and at lunch break (overall an hour but i spend half an hour in ict).
yes, i have a tablet and i find the voice recognition thing very helpful. yes, i do sometimes wear fingerless but i feel more comfortable with full.
but i have to take part in a six week metal work course, and in that i have to use bending things and other machines, so i have to figure a way round it, plus i have to get some different gloves... 
i dont wear thermals but i do wear long sleeve tops under my shirt which helps i find.
zippo warmers, interesting...ill look into it, thanks!
like i said, im not working yet, but what i want to become could be challenging....id like to be either a dance teacher, a teacher, teach the disabled, or create thing....a bit like kath kidson? yes unfortunately so 
thanks!!
Nah, explain this matter to your doctor. Get a sick note to use a dictaphone or a laptop. (Which would ease the pressure on the fingers). Most people when they write tend to put way too much pressure through the writing implement mostly because they haven't learned how to write correctly. (They haven't taught 'Calligraphy' at schools for years and handwriting lessons don't count). Then take the sick note to the head of year / school counsellor (not the nurse) or Deputy Head. You should be excused from having to take notes in the normal manner or you may even get assistance due to disability. (Yes, it's a disability). With that said, any writing that does need to be done, you should be allowed to do it in your own time due to disability. You should...in theory have a disability representative at the school...we have one at the school I'm a governor of.
Now the metal work course won't require a lot of pressure going through the fingers...usually. The machines do much of the hard work for you. To be honest school level metal work requires no force whatsoever. The only problem tends to be with the vibration from the damn filing.
Teaching will be much much easier than most other occupations. What with all the new teaching aids coming out. Most teachers no longer have to write for extended periods of time on the black board (due to slide shows), most lesson plans can be done at home in your own time (typed up using Voice-to-Text technology (i.e Dragon)). Dance, should be beneficial rather than something difficult to do as there isn't a lot going through the hands (usually).
yeah, ill speak to my mum about the writing difficulties....ok, i dont think its going to be too hard, although this morning my hands were that painful i had to kick my duvet off and ask my sister to open the mascara!!
yes, as long as i keep doing what i love (acting, dancing, craft....) it wont be as bad as ill have something to look foward to.... i do ballet and other types of dance, and in ballet my arm is constantly white and my feet constantly numb....its harder than i thought haha thanks 
Litllemissshy, hasn't your doctor prescribed you any vasodilators? I would ask - something like Nifedipine could potentially help you so much. Personally I find the silver gloves much better than ordinary ones, the fingerless ones are great for typing in a shared office where some like it hot and some cool!!
Most importantly, don't give up on your dreams. You can - especialy with your doctors' help, make it. I don't really advise you to push on through the pain as typing isn't perhaps the kind of exercise that'll work but I had to do just that (not that I'm feeling sorry for myself, though I did sometimes then) as i was diagnosed with Raynauds at 13 by my GP and had no medication for it until at least 1998! Eventually the blood would return to my fingers and then they'd stay warm (this was when I did Christmas post for two years back i the 80's). You shouldn't though do that if and when you find out that your Raynauds is secondary. Also, your Raynauds might be worse than mine was. But please don't be afraid, don't let it beat you.
Do please see your GP though and ask for something that will help - I'm sure you don't have to see the rheumatologist first in order to be prescribed something. When it comes to thermals, check out John Lewis on line they do some that are what I call 'decent looking' (i.e. not like your grandad's long johns ) You can get them in black, ivory and a sort of lilac shade (I'm still trying to get some of those, they always seem to be sold out of my size!). The tops look more or less like ordinary t-shirts and if you wear trousers at school, the leggings are fine enough to go under them. They're not terribly expensive either - about £30 for a set, post free.
Good luck, hope your rheumatologist appoinment comes through soon. I'll be thinking about you.
No my dr hasnt, she doesnt want to as they only prescribe people with them when they are a bit older than me. She is sending me to the rheumatologist to see what he or she says about it though. Ahh ok, luckily typing doesnt come into my agenda much, only when i text really. Writing by hand is hard though. I dont have any of the common secondry conditions, but me and my mum think i may have somethin else, although we think it might be mercury poisoning now (i ate ALOT of tuna, 10 tins a month, when youre meant to have 2). But whether i have something else or not, if it is mp then it could and should go away, but a lot of my pains will still be there.
Thanks. I'll look into it
Just wanted to send my best wishes and I don't think I can add any more advice than ravenshade. I do hope the warmer weather, if we get any, helps I do feel for you.
thanks, although wales isnt exactly the ideal place for summer haha....
^THIS. Wales is a terrible place to be for Raynauds. *Currently in the cynon valley, aiming for cornwall >.> *
VERY true, hail in summer?? Its meant to be warm, not freezing... o.O im near abergavenny, so not by the coast, which is good as that would be windy haha ^,^ sorry but where abouts is that?? +.+
You know Merthyr? Not there XD But seriously just a few miles south and a tad to the west. Which means we get the weather from the Beacons. It's not the hail that bothers me, it's the fact that I've seen dustbins being blown about in the air O_o;
Yep i do haha ahh ok, not far from me then!! Omg, really??? Scary....
Nah, within stalking distance hehe. Because of the valley and how the wind comes down slightly at an angle the wind tunnels down the valley at pretty high speeds and really damn cold too!
Hello littlemissshy,
Could you ask someone to call the rheumy's secretary and ask if you can be seen soon as pos as your condition seems to be getting worse? You need to be given the right treatment from the experts in this field. You appear to be having a real hard time. Someone needs to speak to your teachers and put them in the picture. Your GP can do this for you and should do it asap.
Do you go to your appointments alone? Can a family member or friend go with you to support you? What is the score? You appear to be doing this with not much help. If I'm wrong, please forgive me. It's just that you're really struggling and not much happening to improve things for you.
How do you concentrate on your studies when you are so uncomfortable? You need more help and fast. Is there any more we can do to assist you? Keep warm and take some pain relief medication regularly as prescribed and rest as much as possible. Eat and drink well.
Please keep in touch and let us know what's happening. All the best.
Hi, i think the dr has pit me on the more urgent list, so hopefully mire actoon soon. Yeah, i have a dr s note that i keep meaning to photocopy.
I go to my dr with my mum, as im 3 years away from driving yet lol. At home, when im particularly bad, they do stuff for me, i dont go in the freezer, they carry heavy stuff. They do loads, but when it comes to really bad pain, they try and make sure i dont strain myself. Most of my teachers know, so i just try and take it easy. Thanks
Hi, do you have student support services at your school? they may be able to help with you being able to use a laptop / tablet during lessons if this would be easier than writing. You should also be able to get help such as extra time and using a laptop for your exams when they come along. Might just need a letter from the docs stating your medical condition and how using a laptop might be easier for you. Just a thought. look after yourself.
Thanks.
I am assuming that you can work on a key board. I have a heated mouse which is great especially when the hands are numb and painful. They are called Hot Mouse and the company do other heat related products to make life easier on the computer. Certainly worth looking into.
Ahhh thanks, heated mouse.... cool! Ive discovered so many new things from ppl on here, thanks for your contribuition
Hi
Just been reading through your question and resonses.
I have had Raynauld's for some years now. When I was not so bad, I found that wearing long sleeves (not 3/4 or shorter) made a big difference. What I noticed was if I was wearing a shorter sleeve, or even just pushing my sleeve up my arms, my wrists would start to feel ice-like and then into my hands and then into my body. The long sleevs significantly reduce this and don't involve relying on changes to your environment which are not always under your control.
As my condition worsened I found that I needed to also wear long sleeved thermal vests - again wearing a shorter sleeve vest, even under long sleeves, did not work. Now I also wear thermal long johns and this also helped. Sorry not very sexy, but makes a huge difference to me.
To sum it up, what works for me is to get an all over "base layer" of the same warmth. It doesn't stop cold hands totally but it makes a big difference for me. Then wear long sleeves over this.
The other thing is to wear a cardigan/jumper with sleeves that are too long. You can fold these back most of the time, but if your hands go cold, say during a class, then you can roll your sleeves down for instant warmth.
I also take Rutivite tablets twice a day (this is made from Buckwheat, it's non-prescription - I buy it durect from a manufacturer - powerhealth.co.uk).I find ginger drinks help and I know other people with Raynauld's find that ginger tablets work - but for me they make me very hot and then I go cold - hello Raynauld's attack!
Last thought, I wear silk gloves if my hands start getting too cold. They are lightweight and I find I can type in them and write. The other great thing is they easilty fit into a pocket or bag because they hardly take up any room. I buy mine from Patra - patra.com.
Sorry for the long reply. Hope you can find some relief soon,
Nicola.
hi Nicola,
thats all really great advice, thank u!! i already wear long sleeves, but what i find the worst is the crushing pains (feels like my hand is in a vice) which i cant seem to prevent.... i find that even eating ice creams doesnt help me....im seeing the rheumo nxt thurs so hopefully get an official answer to my endless probs.... although there are the odd few teachers at school who are supportive, there are quite a lot who couldnt care less. i suppose until they see me have an attack they will never believe me. its a shame reallly that so many people have lied about having condition that the teachers and other people dont believe you when you are actually being serious....thanks and all the best x ps, if you ever want to pm me youre more than welcome x
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