Raynauds and Hypermobility

[Boudica78]

Hello,

I've been diagnosed with primary Raynauds which is getting worse. I've had blood tests to rule out other conditions, but they've all been negative. Should I be pushing for a nailfold capillorthingy (technical term...)?

I've also got colitis, irritable bladder, some joint hypermobility so I'm wondering if there's a connection to all that.

Thank you

[Pixix]

sorry, I don’t know enough to answer your questions, but I have IBS, joint hypermobility & Raynauds. I find these diseases come & go a bit, sometimes even affected by the weather. I don’t know what causes the flare ups, sometimes. My joints will happily 7ndergo a month where something dislocates or subluxates each week, then noth8ng for 2 months. Raynauds, obviously worse during cold weather, like we are still having now in UK, then better in summer? I have a number of other medical issues, & am just grateful that they take it in turns! I’ve never had a nail food thingy, either…hopefully somebody who has will join in!

[Boudica78 in reply to Pixix]

It's a fun cocktail isn't it?! My raynauds wasn't great this summer, which is why I'm thinking more tests would be justified.

[Pixix in reply to Boudica78]

pure joy!

[cowhide]

Sorry to hear of your problems. Has anyone looked into Ehlers-Danlos syndromes? nhs.uk/conditions/ehlers-da...

[Boudica78 in reply to cowhide]

Thank you - no. Once of the things I'm wondering about is EDS (or an EDS)

[Pixix in reply to Boudica78]

Oh, that’s another of mine!

[OldTed60]

I have Raynaud’s and hypermobility - also systemic sclerosis, hypothyroidism and Sjögren’s. I suspect, if autoimmune bloods are normal, they might just shrug you off about getting a nailfold capilleroscopy unless it’s thought that you have unmistakable symptoms and signs of an autoimmune disease such as systemic sclerosis, lupus, RA or Sjögren’s. I could be wrong as a lot depends on your postcode. The frustrating thing I found was that my hypermobility was masking my systemic sclerosis and vice versa as they are polar opposites and no one had ever diagnosed my HSD/ EDS. I’m getting geneticist input next month on whether I might have a rarer subtype. If I do then it will have taken 61 years to diagnose! .

[Boudica78]

Thank you. Indeed - fairly used to being fobbed off! I'm sorry you've had a tricky health journey. I will keep my fingers crossed for a useful result for you next month.