Scleroderma & Raynaud's UK (SRUK)
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Suspected Raynauds - guidance needed

First time poster here. I've been concerned for a while about my hands. I've been feeling the cold more and more since November and initially put this down to my weight loss and a bad winter. However, I've been concerned about my hands much more recently. Essentially, when they become cold, they go deathly white, they hurt (while they go pale and then they ache for many hours after), they go ridiculously cold, and I'm unable to use my fingers properly. I can't write at all, struggle on type, on occasions I have had to bend my fingers into a normal shape as they've seized up. The only way to get them warm is to hold them under warm to hot running water or to put them on a radiator. Understandably, I'm concerned about this and suspect it's Raynauds and I want to see my GP. I don't visit my GP very often though and don't want to waste their time, so I suppose what I'm looking for is guidance here and reassurance. Am I right to see my GP about this? Is this the kind of thing they're there for? I was going to leave it, but it's May and I'm still experiencing these symptoms as soon as my hands get cold.

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Hi NutrNotts welcome 🌸🌿 🌿🦋🌿🦋🌿🦋🌿🦋🌿🦋

Yes talk to your GP about this. I’ve had Raynauds Phenomenon since 12 (55 yrs). It is the constriction of your blood vessels blocking blood flow to your hands and fingers. If the flow isn’t restore soon it can cause damage. Sometimes the disease can progress to fingertip ulcers and in worse cases gangrene.

In my case I get it wherever it pleases to go and anytime it chooses. 🌹🌿🌹🌿🌹

If you are on a beta blocker for blood pressure or heart problems the meds can cause this problem or complicate existing Raynauds. 🦋🌸

Best wishes 🌸🌿🌺🌿

😊🌸 🤗💕😘

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What caused the weight loss?

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I've been actively losing weight to become a healthy weight BMI wise.

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Yes, see your GP. You need to get checked in case anything else is going on, hopefully not but better to sort things out. Keep warm and take care

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Seems like Raynaud's.Go to GP.Have extensive blood tests taken,especially ACA.Take care.

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Hi NutriNotts,

Sorry to hear about your fingers - it certainly sounds like Raynauds. I know because IK was diagnosed with it a couple of years ago. It's a total nuisance but you get used to living with it. I would not have thought it is diet related although mine improved when I corrected low iron levels (which can be diet related). But it is very important to find out if you have primary or secondary Raynauds so you must visit your GP.

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Hi it's probably best to see your GP, if nothing else to put your mind at rest. If it is Raynauds the SRUK charity has a website is great for advice. I wouldn't advice the hotwater or radiator it might may things worse. Also once you have a diagnosis let us know on this forum and we will, be able to support you. Take care

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Thanks everyone for the reassurance. I've booked an appointment for tomorrow morning. The fact that my hands are still aching a day after the last attack suggests that I need to check it out. I'll let you all know how it goes tomorrow.

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Hi NutriNotts.

Sorry to hear about your troubles. I would suggest to ask for a prescription to a rheumatologist right away or go there directly if you can, as they are much more specialised in vascular diseases of the small blood vessels.

Not discrediting the work of a GP... but that is what they are: a general practitioners - who tend to know a little bit about everything, but generally not in great detail.

Try and put dome pressure to speed up your appointment. Do you have private medical insurance? Then maybe go and see a rheumatologist privately. With a diagnosis in hand, you have at least the right pressure point to speed up the NHS appointment and get relevant tests done prior to your appointment (I.e. bloodtest), so you already have that at hand at your appointment.

Good luck!

Hd

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I would say 1 step at a time. See your GP and it get the blood test results.

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I thought I would update everyone. I went to see my GP this morning and on the basis of my hands being ghostly white and freezing cold to the touch, she suspects that it's Raynaud's phenomenon. I've been sent for a blood test to determine whether it's primary or secondary then we'll discuss medication after that. She was a little concerned at how quickly the symptoms have developed in severity, just over 6 months since I started getting symptoms, but I suppose the blood test will reveal more. It's probably been the worst attack I've had today though; I would say of the 17 hours I've been awake, I've probably had warm hands for 5 hours at most.

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Good luck and keep us posted. Keep your core temp warm to keep your hands warm

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I am a 60 year old male from Italy and have been suffering from limited Scleroderma since nov. 2011.Go immediately to your GP , have blood tests taken and then fix an appointment with a rheumatologist.All t5he best and keep in touch.

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My hands were like that and it is reynauds. Didn't worry too much til I got ulcers on 3 finger tips and the nurse treating them was relieved to see a blood supply or they would have to amputate. Scarey. Now I am fanatical about keeping my core warm, including not having cold food or drink. I react to that change in core temp. Always have a jacket in case of a breeze even if it' hot out. Wear glove When shopping for cold/frozen food. Drink hot tea or water when feeling chilly.

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If i could just stay away from the cold isles in the supermarket i might manage tp get through summer without. This morning I struggled to get the big shop out of the trolley and onto the counter then again into the bags. Fortunately they came back to life before I had to unpack at home. Still it was extremely painful. They were dead. Good luck with the doctors. I'm on Losartan but it has got worse not better.

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You should have your primary refer you to a Rheumatologist

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Hi all, so I'm glad I went to see my GP. The blood tests have come back and one of the markers they were testing for is borderline/iffy. My GP reckons that this marker, together with the speed of the onset of my Raynaud's developing severity of my symptoms (yes I'm still having bad attacks in this warm weather!), suggests that I have secondary Raynaud's. She's referred me to a rheumatologist and suspects that I have a connective tissue disorder, so I'm now waiting to hear from the rheumatologist about the next steps to get a formal diagnosis.

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