Reynaud's

Hi just a question to anyone that has reynauds. This happens to my hands when in the house. Also the skin starts to crack on my fingers and they get sore. It's primarily one hand. My question is how do you tell I'd it's secondary or primary? I read that secondary mainly affects one side of your body.

[Lupiknits]

I’m diagnosed as Secondary but have it on both sides. I think Primary and Secondary just refers to whether you have Raynaud’s alone, or wether you have it in conjunction with another condition

[Hidden in reply to Lupiknits]

My rheumatologist said it's primary but i have a positive ANA so does that not mean secondary? Sorry if that's a silly question but still trying to understand things.

[Lupiknits in reply to Hidden]

I really don’t know the answer to that, I’m sorry. All I can say is that it coincided badly with other symptoms. I always think it doesn’t really matter what they call it, as long as they treat it.

[Hidden in reply to Lupiknits]

Thanks for the reply. The gp prescribed nefedipine but I think I need a stronger dose as it's not really helping much so far.

[Lupiknits in reply to Hidden]

There are others to try, and see if they help. Unfortunately my low blood pressure makes it impossible for me to take them. I hope your GP can help.

[Hidden in reply to Lupiknits]

I was started on one tablet a day. To go back to the gp to check my blood pressure is fine. Will ask if she could maybe increase it to 2 a day if blood pressure is ok.

[Lupiknits in reply to Hidden]

Is it the long-lasting kind that should cover you 24/7? I only ask that because when I trialled taking it, I had the shorter lasting one, in case it affected me badly.

In any case, back to the GP is best x

[Hidden in reply to Lupiknits]

Yeah it's the long lasting one. I'be had reynauds for a few years. But never this bad. It's definitely got worse in.the last 4/5 months.

[Lupiknits in reply to Hidden]

Definitely needs more help if you’re on nifedipine and yet getting worse x

[honeybug]

OMGoodness dear Sophie. By the looks of your fingertips you look like you have the kind that creates ulcers and necrosis.

Better see the Rheumatologist ASAP for treatment to prevent finger loss.

Primary Raynauds isn’t caused by anything else it stands alone as an independent condition. Secondary Raynauds (Raynauds Phenomenon) is caused by another condition like autoimmune disease/genetics.

I have secondary Raynauds. I now get it anywhere. I got it from my dad. His hands do like yours whereas mine blanch out totally white slightly blue sometimes and my feet have always been affected too. It is cyclical with my Inherited Erythromelalgia. So I’m continually cycling freezing 🥶 up followed by burning 🥵 up.

Miserable state to say the least.

I wish you a good outcome with your doctor and treatment.

Take care. In the meantime be sure to keep a good quality lotion on your hands and wear light weight gloves in the house and warm your hands under WARM water to pink them up.

Best wishes and abundant blessings.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

[Hidden in reply to honeybug]

Thank you for your kind words. I have been on nefedipine for a week now but not really helping so thinking I need a stronger dose. I showed that pic to my gp but she made no comment. The standard answer to any symptoms is 'I don't know' I also have that same problem with temperatures. If it's not a heated blanket from being freezing then thr fan is on from being too hot. It's draining.

[honeybug in reply to Hidden]

Yes it is draining.

Here in the USA 🇺🇸 there is a world renowned clinic that is known for excellence in diagnostics and care and you can research your symptoms from A-Z. Sorry I can’t do links yet but if you want to visit the site go to

mayoclinic.org

Best wishes dear and take care.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

[Hidden in reply to honeybug]

Yes I have looked at that site before. How do you cope with the constant fluctuating temperatures? It could be the coldest day/night here (which in Scotland is cold) and I need a fan on. Again this started about 3/4 months ago. I struggle to deal.with it now. Asked the gp but she doesn't know why.

[honeybug in reply to Hidden]

We have cold Winters here in northern USA 🇺🇸 Michigan. This season is unusually warm due to El Niño. But with Raynauds all it takes is a chill or stress or so many triggers to set us off.

I always dressed warm no matter how hot. Then age 19 my hormones were unbalanced and my Erythromelalgia caused me to burn up so that crazy cyclic freeze/burn began.

Layered clothing....peel off/put on all day long.

Hand warmers electric blankets layered bedding flannel pajamas thick socks and light weight gloves when freezing. Burning up peel off as much as you can. Ice water/ beverages ice packs in the freezer fans cooling showers air conditioning. The main thing to aid in my burning pins needles skewers is Paxil 20 mg at bedtime.

I’m 68 soon and been existing like this since age 5. It becomes very wary when multiple conditions are flaring together.

Best wishes to get better dear.

EJ 😊🌿🌸🦋🙏🤗💗😘👼🕊

[Hidden in reply to honeybug]

Hi that is my life on a daily basis. Wrapping up then trying to.cool down. I'm only 36 and it really is so draining. I don't like inviting people round as the house is normally so cold. I don't have any diagnosis as yet. Just a possible lupus. Not sure if the extreme temperatures relate to that.