Raynauds - aibu to see GP? Any point?

[tinysnickersaremyfavourite]

Hi all. I am pretty sure I have Raynauds. I've never talked to a doctor about it but I have the typical blanching and numb fingers when they get too cold.
I've always just put up with it but the last few years it has got significantly worse during the winter. It now happens almost every time I drive even with gloves on, heating full blast etc. It often happens outdoors even if I am wearing gloves. Increasingly it is happening even indoors if I do something like getting food out of the freezer. Yesterday I spent much of the day (indoors!!) with my fingers either numb or with that horrible throbbing as they come back to life.
Has anyone here been to GP about it and come away with anything useful?
I have read about nifedipine being helpful - does anyone have experience of that?
My siblings and mum also suffer the same.

Thanks in advance

@tinysnickersaremyfavourite
I too am a Raynauds sufferer.
I'd certainly see your GP and see if nifedipine is available. I've heard of others who have had definite improvement with it. I hope it woks for you as this is the most understood condition to explain to others.
The pain when your circulation comes back is immense like having you fingers and toes shut in a door and having it slammed on them for 1/2 an hour. (I also have to remove all piercings in the winter as my ears, nose and nipples are affected).
I have tried other meds since my teens but nifedipine was the last one I tried to no avail. (All have given me migraines but it seems that's just a personal reaction).
I've adapted my lifestyle to suit my condition as it has gotten worse as I've aged. I'm 45 now and when I was first diagnosed at 17 I was told I'd probably grow out of it.
I find that ensuring health and fitness helps boring as that sounds but getting the circulation working early in the day has a lasting effect.
When you are out and about if you can swing your arms as you walk it help and don't carry bags in your hands, shoulder bag is a must. (Good excuse for that Mulberry Bayswater you maybe want).
A wee sprinkle of cayenne chilli in your food also helps. Cut back/out on salt but use plenty of pepper instead.
Gloves and silk or cashmere glove liners all year round are a must, especially in the supermarket. Charcoal handwarmers like 'little hotties' that last most of the day are helpful. The reusable ones don't hold heat for long but stick them in the kettle when you boil it to save time when you reactivate them.
I hibernate through winter but I find the fluctuating temperature of summer almost as bad as winter but air conditioning is the worst. (I was the muppet with the gloves on with my tee-shirt in last years heatwave.)
Good Luck. I hope the nifedipine works for you.

Hi OP. My Raynauds has pretty much disappeared since I got my dog. I walk her every day (wearing gloves if it's cold). If it's really cold my fingers go red despite the gloves, but never white. I think the exercise has improved my circulation. Could you take up aerobic exercise, if you don't do any at the moment?

Yes, my mums has this and takes nifedipine. Why wouldn’t you try it?

hello. Fellow sufferer here. I was offered an operation to cut the nerves in my neck, which I declined, because it came with risks.

I did take drugs for a while, but it was long ago, and I can't recall what they were, or if they helped.

the Reynauds settled a lot. I was less hormonal and anxious, and began working hard to keep myself warm at all times- extremes of temperature can set it off for a few days after.

I found tips from this charity: www.sruk.co.uk/

In answer to your question, maybe you could wait six months, try a few of the tips which might be left here, and then reassess? it's tedious, but maybe you will have to rummage in the freezer wearing gloves for a bit. I hope yours improves soon.

I have raynauds too never talk to my gp didn't know there was medication , I get it with stress too , it is quiet painful at times and makes some things difficult anybody else get a numbness on their face too

It’s definitely worth seeing the GP , I was diagnosed at 16/17 and I’m now in my 50s . Nifedipine didn’t work for me in the early days and I was offered a sympathectomy after I got frost bite but opted not to have it , I’m not sure if that’s something that is offered on the NHS anymore . I definitely have years where it’s worse than others .

I have Raynaud's and it was one of the pointers towards a particular auto immune disease. My GP sent me to a rheumatologist (although that was mainly the result of finding certain bio markers in a blood test) and I am now under the care of the specialist.

Still got really painful fingers though!

I have Scleroderma which is often co-morbid with Raynauds. I think you should see your GP with a view to seeing a Rheumatologist for the best advice. But maybe I'm alarmist having come across it via Scleroderma

I was subscribed nifidipene for awful raynauld’s and chilblains on every toe but it gave me terrible headaches and swelled my hands to the point that I couldn’t use them and my (skinny, size 8) ankles were so puffed there was no definition.

I went to the GP about Raynauds and they really put me off trying medication. The warming up is the worst - I find running slightly cool, almost lukewarm water on them brings them up slowly and less painfully. Doesn't help the toes though!

Nifedipine really helps me too, it's well worth having a chat with your GP.

I had vasospasm in my nipples when I was pumping and holy god the pain. Was tempted to cut them off as figured that would hurt less. I’m not sure if it would work for hands but when I was researching vasospasm I found that people swore by lining their bras with a space blanket. Wondering if you could do the same with mittens and whether it might help?

I’d definitely see the GP though, as I think it’s linked to other conditions

If you’ve had it a long time (ie since adolescence) and you just get white fingers without blueness or ulcers or tight skin then it’s very likely primary Raynaud’s or cold intolerance and nothing to be concerned about. If you find it’s worsening then do see your GP who can suggest measures as previous posts mention.

I've found having a steering wheel cover has really helped. Mine's heavy duty rubber with plush hand areas. The difference is amazing. I even drive without gloves again.

Your gp will refer you to a rheumatologist. Mine got worse (really painful) in my late 30s and I saw one, they put me on nifedipine but it gave me headaches so now I just manage it myself. Make sure your core is really warm, get good gloves, etc.
Rheumatologist will check that it’s primary and not part of an auto immune disorder

I’m not sure in other areas but certainly in mine currently Nifedipine is unavailable in pharmacies and there currently is no other licensed alternative for Raynauds. It certainly is worth going to see the GP though OP to confirm.

Some great advice above. Just wanted to add that keeping your wrists warm (instead of it in addition to gloves depending on temperature etc) is really effective.

They can give you medicine

Nifidopine is in short supply in the Midlands too. I don't use it all year round though but when I use it I find it really helps. Luckily I never get headaches from it. Definitely worth a Drs appointment.

Sufferer here too! I was given Adalat by my GP. Worked a treat!

I also suffer from Raynauds.. use hand warmers and lots of lotion.

Fellow raynaulds suffer here. I've always had it but got a lot worse over the last few years. Coincidently I've also had some autoimmune issues so rheumetology dept in hospital like running blood tests on me as raynaulds can be associated with other issues.

I've been prescribed adalat last year but that's not available now and I have another prescription awaiting pick up to try that. The pills do help quite a lot though I seem to get hot flushes occasionally with them.

Another raynauds sufferer here, had for as long as I can remember.
tried medication, but didn't agree with me. Now have a hot bath in the morning and another in the evening, and largely keeps it at bay. very occasional chilblain as well. My dm also suffered

Thanks for all the answers.
To answer some questions : I do exercise, 20 mins walk twice a day (school runs) plus 3x cardio classes per week and some strength work in between. Sometimes my fingers go while I'm doing a workout.

I do wear gloves and have handwarmers. I also have turtle doves wrist warmers that I wear in the house. These things don't help when driving though. My fingers often go white when I'm cooking - handling and chopping things that have been in the fridge. So annoying because it does not feel very safe using a knife when I can't feel my fingers!

I normally do stick them in warm water to get them to come back but sometimes it takes a very very long time.
I've never considered medication before, I didn't even know it was an option until recently, but honestly it's been so much worse lately that it's making me a bit miserable.
I'd not thought of a steering wheel cover, so thanks for the suggestion!

Someone linked up thread to Scleroderma & Raynauds UK which is well worth a look. They sell lots of useful products and good advice