Raynauds

[caramel7]

Is there any specifics for a diagnosis of raynauds. Any info will be greatly appreciated!

[PMRpro]

Primarily the symptoms - and when there is a suspicion you can be referred to a vascular specialist (usually a surgeon but not always) for testing in their lab although in some areas GPs have direct access. They can differentiate between primary and secondary Raynauds (secondary is due to another condition), how severe it is underlying the symptoms and so on.

ncbi.nlm.nih.gov/pmc/articl...

is a paper about the criteria - and has tables with the sort of questions asked in the clinical diagnosis process. The actual process of arriving at the questions isn't important for you, just the questions. and the Discussion starts with a paragraph about the basic criteria that must be fulfilled.

I don't know what they do these days, but in my husband's department they did cold challenges to show you showed the colour changes and changes in blood flow in the hands in response to your hands being immersed in cold water and then thermographic images being taken. Images of my hands adorned the walls as "typical responses"!

I have a form of vasculitis - and since it was diagnosed and managed with corticosteroids I don't think I have had a single episode of real Raynaud's, just occasional cold hands.

[Ceri-NorthWales]

Difficult for me to say due to bad rheumatology experience, however, I have had raynauds phenomenom added to diagnosis of SLE. When first diagnosed in October 2019, I was asked by rheumatologist if I suffered cold hands and feet and change of colour. At the time I said yes, but nothing unusual as there had previously been no change of colour (health problems had only started March 2019 following pneumonia). In the weeks after the appointment, during a short cold period, I did notice my hands change colour, go numb and 'burn' when coming back. I took photos on a couple of occassions and showed the rheumatologist hen I was next in clinic. He said it did suggest raynauds and named the stage of raynauds the photo represented (can't remember).

After then, I read through all Lupus UK publications to do my own research and found if positive for Anti RO, raynauds is likely. When I was last in clinic (for the final time, being transferred to a different hospital and rheumatologist), I asked him outright and he said yes, I do have it and said he confirmed it in December and offered meds to help circulation. All I remember is he said 'it could be' and on the clinic report from December appointment, there is no mention of renaulds. I asked him to put it on my records. The clinic report from that appintment does list it as a diagnosis. It probably helped tha I had a member of the complaints team with me and the outpatients manager was also present.

So unfortunately, can't really help with how it is diagnosed, but that's my story. I may have a different experience when I see a different rheumatologist, I don't know.

My only advice I can give would be to keep a record of symptoms and take photos if you do experience colour changes in your hands and feet, use Lupus UK publications as research and compare to your own experiences. It would be useful if you know which antibodies you have tested positive for a this can be used as an indicator. Good luck with trying to get a diagnosis or answers.

[Hidden]

I was diagnosed just by photos alone but I do have at least 2 confirmed autoimmune diseases. Mine didn’t show up 3 years ago on nailfold capillary tests but I think it is secondary because it only started along with small fibre neuropathy and Erythromelagia in my late 40s.

[cowhide]

SRUK the charity have a Raynauds self test and lots of information on their website.

[tdbsnoball]

Its supposedly in family genes. I have nd will have the rest of my life. It sux when its bad weather nd cold weather is the worst. Im on a prescription 2 help keep blood circulation going. My hands turn purple or blue or white and go numb when crazy weather occurs. The medication is called Nifedipine that helps blood circulation flow.

[Olderkitten]

My Raynauds was diagnosed because my hands were bluish purple and very cold no matter what time of year or temperature inside or outside. My nose gets so cold sometimes it feels like lt could break off! Lol. Can be painful as well.