Advice for seeking medical advice for... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Advice for seeking medical advice for Raynauds Phenomenon please

nursenicky13 profile image
11 Replies

I suffer with Raynauds Phenomenon & have done so since 2005. I ignored seeking any treatment for this because of my job & the implications it could have had for my work as a frontline nurse. I was diagnosed in March with primary biliary cirrhosis (PBC) & I appreciate there is a very close link between the these autoimmune conditions. Raynauds affects me terribly in the colder months or if I become stressed with ice cold fingers & hands. Last winter it was affecting my feet, at times with very cold toes. I have asked for a referral to dermatology but I'm wondering if I should've asked for a referral to rheumatology or whether to ask for both? Can you help me out here please? I feel a bit lost and am just wanting to make sure I've not missed anything even though I'm a nurse!! Any advice is greatly appreciated. Thank you

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nursenicky13
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11 Replies
zenabb profile image
zenabb

Get referred to rheumatology as soon as possible. Don't let it drag. You need appropriate medication to get the blood to your extremeties. Keep warm in your body, wear several layers otherwise the blood rushes from your extremeties to keep your essential organs going.It should not interfere with your job. Good luck.

nursenicky13 profile image
nursenicky13

Thx zenabb for your advice x

PatientX profile image
PatientX

I have suffered from Raynauds for 10 years now but thanks to treatment, in the Rheumatology Department of my local hospital, I am able to cope with the winters so much better. There are drugs available but it would depend on your personal diagnosis as to which would be best for you. I have Isloprost which is administered intravenously. The down side is that I am in hospital for the Isloprost but the upside is the improved quality of life. You might be prescribed one of the oral drugs. Get a referral to see your local rheumatology consultant and hopefully you will be put on the best treatment for you. Do not despair as there is help out there.

nursenicky13 profile image
nursenicky13 in reply to PatientX

Thank you PatientX, your advice is much appreciated. None of the health professionals I've seen recommended seeing a rheumatologist despite my self reporting of Raynauds & considering I have had an auto immune condition diagnosed. Feeling a bit let down by the system, seems nuts when I'm already a nurse working in the NHS!

PatientX profile image
PatientX in reply to nursenicky13

You are very welcome. I hope all goes well for you.

AHM42 profile image
AHM42

Ask for a referral to a rheumatologist who can advise better on whether or not your Raynaud's requires treatment.

AHM

nursenicky13 profile image
nursenicky13 in reply to AHM42

Thx AHM42 for your advice, much appreciated. I going to see a GP tomorrow to find out if they will refer me x.

AHM42 profile image
AHM42

Let me know how you get on!

AHM

nursenicky13 profile image
nursenicky13 in reply to AHM42

Ok, will do

Lynnie profile image
Lynnie

Does anybody in this country do sympathectomies??....I had mine done in SA many years ago, and the improvement to my circulation was certainly dramatic!!....the downside is extremely dry skin, but it's manageable with buckets of cream....

nursenicky13 profile image
nursenicky13

I don't know I'm afraid, Rheumatology is a completely new area for me sorry. If I get to find out, I will get back to you

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