diagnosis

[wednesday]

i have had Raynaud's for years now but never actually had it diagnosed. I mentioned it once to GP and he said it probably was and to keep my hands warm. A lot seem to be referred to a rheumatologist and I wondered if their doctor referred them or did they have to ask.

[Jmrose]

I was referred but if not not, I would have asked. A rheumatologist is who has the knowledge to treat you and will monitor the progression. There are medications and and things they can direct you in that a GP may not be aware of. Good luck

[wednesday in reply to Jmrose]

Thanks for your reply, if I can get an appointment which is a joke at the moment I will ask.

[pinkcat26]

i have had raynauds for 35 years and was only sent to see a rheumatologist about 7 years ago when i was diagnosed with scleroderma also. However, he also treats the raynauds, which makes it worhtwhile to see one. When i was diagnosed, i was told there were no treatments!

[wednesday in reply to pinkcat26]

Its only being on this site that I have learnt about Raynaud's. Thanks for your reply I will mention it next time I see the GP. Like many I dread the winter. We used to go to Portugal for 3 weeks in January but my hubby had a heart attack so is reluctant to fly.

[Broseley in reply to pinkcat26]

What treatment do you have for the Raynauds please? I assume it works?

[wednesday in reply to Broseley]

Don't have any treatment at all, just try my best to keep my hands and feet as warm as possible. I do struggle when it's windy and cold, wear sheepskin mittens as they are more effective than gloves. I do suffer with my feet but not sure if Raynaud's affect them too. Just feel a bit fed up thinking about the cold weather that will eventually come.

[pinkcat26 in reply to Broseley]

I have tried nearly everything, and unfortunately i havent found anything that works that well. Because it is so bad, i am having illoprost infusions this year. I had the first one today, and will have another one for the next 4 days (6 hours each day) Hopefully this will work

[Broseley in reply to pinkcat26]

Just looked it up. It says it is used for various conditions where the blood doesn't flow in the vessels so well. Problem is, hubby has very low blood pressure (as well as severe Raynaud's) so they have to be careful how they treat it. Most treatments (if not all) lower the blood pressure by dilating the blood vessels.

I hope it works for you!

[Broseley in reply to pinkcat26]

What treatment do you have for Raynaud's please?

[Broseley]

Sorry, I meant to ask pinkcat26! Thanks for your reply anyway, I hope you're not as badly affected as hubby!

[Midgebite21]

A referral to a rheumatologist will depend on whether your raynauds is primary or secondary.

Primary raynauds is very common, approximately 5% of the general population have primary raynauds to some extent or another. It is completely benign and usually just causes disturbance to daily routine predominantly in the colder months. A rheumatologist will not thank a GP for referring them a primary case of raynauds.

Secondary raynauds is associated with autoimmune diseases such as scleroderma, lupus, rheumatoid arthritis etc and is therefore a much more complex issue that usually requires the attention of a rheumatologist. Almost 90% of scleroderma sufferers have raynauds.

To determine whether your raynauds is primary or secondary your GP will want to know if you are having any other issues that maybe associated with an autoimmune condition. If you are in good general health it’s probably just primary and you will just be advised to work out a best way to manage attacks, like keeping up core temperature, wearing hats, gloves and scarves outdoors to reduce wind chill etc or carrying heat pads.

Nearly every member of my immediate family has raynauds (primary), I am the only one that has secondary raynauds associated with scleroderma. I take a vasodilator to manage my raynauds, it does help but doesn’t stop the attacks completely. Managing exposure to the cold, damp and wind is most helpful but I live in Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿 so that can be very tricky.

It’s such an annoying condition (whatever variant you have) I hope you get some answers.

[wednesday]

Thank you that has made things a bit clearer. I don't think I have any other problems only underactive thyroid. So I will persevere and just try to keep my hands and feet warm.

[Beaches23]

I was referred to a Rheumatologist by the GP. Ask for a referral.