Scleroderma & Raynaud's UK (SRUK)
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I don't understand anything about this condition and cant seem to find any answers can anyone please help cos its driving me mad..

I had never heard of Raynauds til I was told I had it,about 4 years ago i was 36 when I got it,

I went away for a weekend and for no reason 3 of my fingers on my left hand looked like they had died I rushed to hospital thought I was dying,

they said it was raynauds and to see my own GP so I went to doctors they gave me some medication called Nifedipine and that's it end of,

no explanation as to what it was or why or how I got it .

But its getting worse I am having 4 or more attacks a day. For the past few months my tongue has started to go numb and about a quarter of it goes white I told my Doctor and all they said was it does not affect the tongue. I also have had a really bad infection in my finger that caused a nerve to become exposed, and needed hospital treatment but again no explanation as to why this is happening I even asked about having the A.N.A blood test but my doctor said I had already had 1 and it was negative, and no explanation as to what a negative test means,

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Im not an expert, but i know a bit. Your three fingers, that happened to me, it can be because of temperature change or stress. If it does happen, always gently warm your hands, so not to damage your hands, eg put gloves on as soon as you know you are going outside. I sometimes get no attacks but when i feel an attack coming on i get out of any stressfull situations and rub my hands or use warm water. I wear gloves nearly all of the time now as it reduces the pain i go through when having an attack and it reduces the amount. Also, that doctor is wrong, it can affect hands feet tongue and other extremeties, all it is, is your body gets cold, takes the blood which is normally pumped to your hand or other extremeties, and pumps it around your body, i think, that ladt part you might want to check with someone else for. A good website is the official rsa website, you will have to type in raynauds and sceledroma accociation though. I hope this helps, let me know if you have any more questions or just want to chat, keep us in the know of how youre feeling x

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Hi TanyaSmith. Welcome to the forum. You can find lots of information on the

Raynaud's and Scleroderma Association website (RSA). It's a brilliant organisation. Your GP should have spent some time to explain things to you and perhaps refer you to a Rheumatologist for some blood tests. It's possible there is something else underlying. Don't be alarmed by this though. Is your GP approachable? Maybe you could make another appointment to see he/she again. Make some notes of the questions you want answers to and ask weather you should see a specialist. Raynaud's is one symptom of the Autoimmune Disorder which has many aspects to it and can be difficult to diagnose and treat. Don't worry, just ask as many questions as you want and keep in touch with this forum for lots of comments and tips from other sufferers. You will enjoy this link. Let us know how you get on. Good luck! Ps. Keep as warm as possible. I take Nefedipine with fantastic result. It helps to increase the blood circulation to the extremities and is slso used to treat blood pressure problems. There are other medications that can be given if this is not effective for yourself. Take the tablets as prescribed and let your doctor know how it's working.

Graygirl1

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Hiya Tanyasmith ! welcome to the community !

Great advice from littlemisshy and graygirl !

the raynauds and scleroderma association website is raynauds.org.uk and there is an on line eshop where you can buy all of your accessories for making this diagnosis more tolerable ! Currently there is no cure but if we all do our bit of raising awareness and supporting the association, hopefully we will be nearer that eureka moment !

Keep warm - Living the dream :) x

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i just wish doctors bothered to find out more about raynauds they seem to think oh ok you have white fingers etc or bit numb in the feet or where ever, they just dont understand the pain we all go thru,and if we all can find out more like on this site or rsa site then why cant they just take a look. All my info came from research not the doc moan moan moan sorry one of those days ......

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i know exactly how you feel, although my dr wasnt so bad, she printed info off for me. i do wish they taught ppl about it in school though, loads of ppl prob have it and dont realize...

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hi I have had it since a child there is no need to worry as its not life threatening ,yes its can be painful and your fingers can swell and go very white in colour it only affects your fingers and toes there are different medication, there is a clinic at Haywood hospital in high lane stoke on tent staffs if you need to no more they could explain in more detail or send you some more info ,it is in are best interest when we get older that we go to a warmer calamity this will help . what happens is the archery's that the blood flows through close s of and then opens so that explain why the colour of are skin goes white its the lack of blood flow in are circulations as we feel the cold more we are more prone to hyperthermia in are old age we are also more prone to have fingers or toe amputated if broken or badly injured I hope you find comfort in my info .from janette

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Hiya all and thank u everyone for being so helpful, I have been to see my doctor and they sent me for some blood test in February 2013 the doctors then phoned me up the day after too go and see them so i did they said that i had too have the bloods done again as I had enlarged red blood cells or summat like that i was then told this was due too alcohol, well I DON'T DRINK my doctor then sent me too repeat them 2 weeks later and after that i got another letter too go again and again and again I am still having bloods done every 2 weeks and getting same results this was over 12 weeks ago and i am still getting told too have em repeated lol and still no explanation, and for the white fingers, i am getting the attacks 4/5 times a day it can be triggered by even just standing up or when i get out of bed in a morning it don't have too be cold for me too get it

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hi TanyaSmith dont worry we all in the same boat here always poeple to give advice on here its a great site we all help one another so chin up gal your not alone

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Your symptoms are typical of how Raynaud's can suddenly start although everyone is different. Your Doctor was wise to do an ANA blood test. When it comes back negative it means that your Raynaud's is primary and not linked to any underlying condition. This is good news! It is a change of temperature which can cause an attack as much as the cold.

Why not contact the Raynaud's & Scleroderma Association to get free literature on the subject and there will be someone to talk to should you wish to have a chat and give you further information. raynauds.org.uk

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Hi TanyaSmith I dont think there is a blood test to show Raynauds but it sounds like you have it !The blood test my family Dr did showed i had an Autoimmune disease he then sent me to an RA Dr he did blood test show Limited ScleroDerma with CREST in 2011 but i had Raynauds since 2008 ! You need to find a doctor who explain things and my RA only did blood tests 2 times since 2011 to check my ANA ! My RA DR told me it should a certain antibiotic that's how he seen Scleroderma .Praying for you i know how painful that is .But since i keep gloves in car and in house by my chair i have fewer break out with my hands !I also keep hot hands in my car and heating pad by my chair in house ! I also take Nifedipine its helped a lot !Praying your fingers heal up fast !

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