My doctor has diagnosed me with Raynauld's not by a blood test but by my description of my (admittedly fairly obvious) symptoms.
He also seems to have nothing useful to advise, all of which clashes with me as an engineer as I want hard-facts and actions
Is it worth pushing it?
Hi there, here is the NHS advice on Raynaud's
or go to sruk.co.uk for lots of information
Your GP is likely to do nothing unless it is having a significant impact on your daily life or he suspects that there are other issues in the background like Scleroderma. At the most he may prescribe medication
Hope that helps
I know it’s frustrating not having a clear cut test or answers which satisfy. But Raynaud’s is fairly apparent so your GP is right. However if there are accompanying symptoms such as rashes, joint pain, stomach problems etc or if it’s very bothersome then you should be offered blood tests for antibodies pointing to autoimmune diseases. There are vasodilator drugs you could try such as nifedipine and other hypertensives. If you want to learn more about whether yours is primary/ benign or secondary or to try treatments then go back to GP and push for these.
Just to say, so you don't get too alarmed by the idea that it could be something more than Raynaud's, >99% of Raynaud's is primary so <1% of people have it secondary to a wider autoimmune syndrome like scleroderma or lupus. There is no blood test for Raynaud's, it is diagnosed on history alone, occasionally with a cold water test but not normally. If you have isolated Raynaud's with no other symptoms, then further tests seeking potential associated conditions are not indicated as the tests have to be taken in the context of other symptoms and are not predictive of developing anything else. Yes it doesn't feel very scientific! There just isn't anything we can test for.
The best advice is to stay warm, by which I mean avoid sudden temperature changes. The less you trigger it, the less easily it becomes triggered. Keep your core warm as well as your extremities. Wear layers. Be aware of your triggers (some people find caffeine and alcohol make them more likely to have an attack for example). If necessary keep a symptom diary so you can work out your triggers. Have a look at SRUK website for further advice but only look at the Raynaud’s bits!
I was led to believe that the onset of Raynauds in your 50’s/60’s is more likely to be associated with an autoimmune issue. If you are in this bracket I would look into having blood tests to check for different antibodies.
I think I might take the same medication as you for ADHD and one of the side effects is Raynaud's. I already had Raynaud's before I started taking it and we noticed some worsening of it when experimenting with doses. My ADHD specialist told the GP to prescribe Nifedipine as I think he realised I'd been struggling with it for some time anyway and it would only interfere further with dosage changes. He also said I had the worst case he'd ever seen, although I wasn't sure if that was just to get the GP to actually do something! I didn't stay on the Nifedipine for other reasons.
If you have other symptoms then it might be worth talking to your GP about it. I was initially diagnosed with it based on description, but my ADHD specialist saw it a couple of times and confirmed it was Raynaud's.
Hi - I’ve had long term Raynauds but more recently finally been diagnosed with ADHD and am trying medication- have you tried many of the ADHD meds available to try to minimise your Raynauds?
Hope you don’t mind me asking
No, I don't mind you asking at all! I think it's good we all share our experiences.
I tried Methylphenidate first, but found I didn't get any benefit from it and when we increased it, it caused more Raynaud's and strange dizzy spells/blackouts. Then I tried Lisdexamfetamine, which I'm on now. My specialist wants me to try Guanfacine, because that doesn't have any reports of worsening Raynaud's and he said he has seen some benefit to people with ADHD & Autism. I think my advice would be to increase any medication slowly, but I know many people diagnosed with ADHD who are doing really well on medication. Best of luck!
Thanks so much.
When I got sores on my hands and pain in hands and arms for 2 nd time I was told to stop Concerta which was a real blow as the meds made me feel and function so much better- even though I d had similar before starting adhd meds.
I’m under a clinic in Cambridge for ADHD - they’ve been great despite lack of action by Gp.
I’ll ask about the guanfacine
Thanks again
I'm on 40mg of Lisdexamfetamine now, but I think when we tried to go uptown 50mg the Raynaud's became unbearable. I was also quite irritable, so it wasn't great anyway! I find 40mg gives me a good balance of being able to focus better, without any significant side effects. I went a week without it recently and noticed a difference in making decisions (ended up stuck in a supermarket for hours at one point). Some people I know seem to notice it kicking in, but I think it's fairly subtle with me and just takes the edge off. I also find Bupropion for anxiety/depression helpful. I was on Melatonin for sleep too, but have been on a break because I wondered if it was making joint pains worse. It worked really well for my chronic insomnia, though.
GPs can be really awkward. They won't prescribe Bupropion because it's not licensed for depression in the UK (and I have an eating disorder) or Melatonin because it's not licensed for adults. They did try to make a fuss about the ADHD meds, but I think my doctor had a stern word with them. He's really good!
Thanks - 1hr and 14 minutes after I take the tablet I feel it switching my brain on 😊
As for GP- they wouldn’t refer for help saying that I’d got dermatitis- turns out digital ulcers - 12 on right hand and left index finger ulcerated from tip over knuckles onto back of hand - ADHD is just me not coping with stress - thanks for sharing and hope all goes well
As I understand it there is no blood test to diagnose reynaulds it is a matter of symptoms which indicate. From personal experience I have found the following useful:
1. Invest in good quality gloves of different materials and thickness that you can wear indoors & out.
2. Keep your nails short and tubes of simple hand cream handy to keep the skin on hands hydrated and reduce risk of ulceration etc.
2. Manage your core temperature & environment to try & keep as even as possible. I have done this even while riding on back of a motorbike so if your hands not too bad atm experiment with what works for you depending on what you want to do
3. Invest in some good base layer clothing that can help with body temp control to help keep fingers warm
4. Do some simple hand stretching exercises I do mine when watching the tv just to keep the fingers as flexible etc
Hope that’s helpful
Recently diagnosed with systemic scleroderma 
Daughter diagnosed with systematic sclerosis 
Recently diagnosed, information please
Newly diagnosed.. Are these symptoms normal?
