Raynauds help please: Hi ive had... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Raynauds help please

gheadjoiner profile image
17 Replies

Hi ive had raynauds for several years now and work outdoors does anyone have any tips for keeping my hands from going white?

Also slightly off topic I was ill recently and was told I had a virus, it completely wiped me out. Tiredness, palputations and weight loss. They couldnt put a finger on what it was as they tested for most things, I was wondering if it could be connected to raynauds? Many thanks

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gheadjoiner
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17 Replies
zenabb profile image
zenabb

What have you been using until now? Let us know and then we can add further help.

Yes, you can get very tired indeed. Have you been tested for scleroderma?

gheadjoiner profile image
gheadjoiner in reply to zenabb

Im not on any medication, the doctor just says its pretty common. I get it really bad too. No never been tested for scleroderma never heard of it before I joined this site. Thx for the quick reply

Nat1 profile image
Nat1

Hi, I work outdoors too. And with my job i can't wear thick gloves. I've found that if I wear a scarf it stops my fingers going numb as quickly as it would otherwise.

I've tried vitamins and supplements but they've had no success. Doctor has given me tablets to try out when the temperature dips again. Very frustrating though.

gheadjoiner profile image
gheadjoiner in reply to Nat1

Yeah Ive tried different things but to no avail, I have no choice to work outside either :(

annjohn profile image
annjohn in reply to Nat1

My son has ra ynauds as do I. I noticed at "Landsend " has some gloves you can put hand warmers in.

You might want to try them. Not too expensive.

graygirl1 profile image
graygirl1

It's hard enough keeping fingers warm whilst indoors I cannot imagine having to work outdoors with Raynaud's. I suppose the ideal would be for you to be allowed to work indoors if possible.

Otherwise you just need to dress as warm as and wear gloves if possible. If you are not taking any medication to improve the blood circulation to your hands and feet, your GP could prescribe something for you. I take Adalat tablets (Nefedipine is the other name) and find it to be very effective.

In time you may need to think about changing career if possible depending on what you think is best. It's a tough call but I wish you all the best for a more comfortable future. Let us know how you're getting on from time to time.

Graygirl1

gheadjoiner profile image
gheadjoiner in reply to graygirl1

Hi graygirl im a joiner by trade and was at sea beforehand and they both face the brunt of the elements. Also very hands on job and can be very painful when im trying to do my job. Ive never told any of my employees as I dont want them to think im at a disadvantage I just seem to put up with it because I dont have a choice :(. Im on no medication as the doctor says its common but he has never seen the state of my hands when they do go white. Thanks for your reply :)

graygirl1 profile image
graygirl1 in reply to gheadjoiner

Good day gheadjoiner,

Please, please, please go again to the doctor and insist he prescribes something to help you and also refer you to a Rheumatologist, the expert in this field. I was at the shop last week, one of the hottest days so far and my fingers were white, numb and painful. I had shoes on, (not sandals) and my feet were exactly the same. I had forgotten to take my Nefedipine but did so as soon as I got back home. I warmed up quickly so these tablets do work.

You don't need to discuss your condition with your workers if you don't want to but your doctor must be informed so you can get the appropriate help. You don't have to just "put up with it" there is help available which will make you more comfortable.

By the way, Nefedipine is not the only medicine used for this so if one does not do the job, then try another.

I always say if I could live my life over that I would train to do something involving woodwork and upholstery. You can't afford to have your hands numb for your work. Off to the doc with you asap. Let's know how you get on.

Good luck!

Graygirl1

Madge51 profile image
Madge51 in reply to graygirl1

What does of Nifedapine are you on? I'm waiting for a 24 hour blood pressure monitor before its prescribed.

zenabb profile image
zenabb in reply to gheadjoiner

This is all guesswork and not reliable at all. You need to be tested and properly diagnosed. You have the right to be referred to a rheumatologist, insist on it. There is a lot that can be done though it is not curable. But you need to know what you are doing. Good luck.

DaveTheSnake profile image
DaveTheSnake in reply to gheadjoiner

Hi, it wasn't until I took some pictures whilst having attacks to show my GP that anything started to move for me. She didn't have a clue as to how painful and dibilitating the condition can be. Infact it wasn't until my Neuro-surgeon saw these pics that he wrote and told my GP that I should be checked out. Don't give up!!! You might have to consider changing jobs, which is a scarey thought in these austere times. My Rheumatologist has recommended silver gloves but I have yet to give them a go! :)

DaveTheSnake profile image
DaveTheSnake in reply to gheadjoiner

If you can, either take some photo's or get somone else to. It wasn't until I did this that my GP (promted by my neuro-surgeon) began to take it seriously! It's no fun when you can't feel your zip & I've had a few close calls! :)

AHM42 profile image
AHM42

Ask for an ANA blood test (Anti Nuclear antibody test). This will help to confirm or eliminate any underlying condition which may mean you need more tests or a change in medication. Ask for a referral to a rheumatologist. Have a look at the RSA website raynauds.org.uk for further information where there is also an online shop with products which may help.

AHM

moimoi profile image
moimoi

I take Adipine MR20 which works for me. It is interesting to see the white starting to creep up my toes before taking my pill in the morning. Veins in my feet had started to go rigid and were painful which is why my GP prescribed the medication rather than because my fingers and toes were going white. I take care of myself and try to protect my hands and feet as much as possible. If there is no pain try not to worry about it but keep active.

graygirl1 profile image
graygirl1

Hello there. I am on Nefedipine tablets 20mgs daily. I don't take it everyday unless really necessary at this time of the year. I cannot do without this medication in the colder months.

Make sure to ask your GP to refer you to a rheumatologist so you can be tested, diagnosed and prescribed the medication you need.

Work with your doctor so you can take part in your care. Don't be afraid to let your doctor know everything including how you're feeling mentally.

I became depressed and frustrated with all the pain and suffering so I was prescribed a small dose of antidepressant to help with pain control and to lift my spirits a bit.

My situation is now more stable so I don't take as much medication as I used to and I am coping much better too.

You too will be able to manage but it takes time with a lot of support and kindness from all around you.

Keep in touch. Best wishes.

emmajane1986 profile image
emmajane1986

Hello. I am new to this site, and have had primary raynauds for quite some years now, but in my feet not so much in my hands. I don't work outside but have horses so am always outside in any rough weather with them. I finally got referred to a rheumatologist last year and have been having Iloprost infusion treatment. I was allergic to Nefedipine so wasn't able to take that, and anything else I have tried just hasn't touched it. The treatment has really helped me, although it is 5 days in hospital it really worked and I have it done twice a year now. Once in November time and again in February as it only lasts around 2 months. It may be worth giving it a go as it has made a difference to me so may work for you too.

I would really try and get a referral if you can.

Emma

annjohn profile image
annjohn

I have raynauds and have the same problem now. I get swelling and red bumps that itch sometimes. I am looking into it also. You are not alone.

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