Scleroderma & Raynaud's UK (SRUK)
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Is primary Raynaud's painful?

Hi, I've not really been active on this much since I joined but I think I could really benefit from the community you guys have on here.

I've been having symptoms since I was 15 (I'm now almost 20) and I feel like they have been progressing and getting more difficult to manage but my bloodwork is not showing anything.

I'm asking if primary Raynaud's is painful and, if it is, what the pain is like?

I started out by just experiencing a blotchy red/purple discoloration on my legs which was accompanied by a heavy ache and a prickly sensation. But now, almost 5 years on, I also get:

-burning pain in my feet and legs

-swelling in my hands, red sore knuckles and knees

-a red flush across my cheeks (sort of like an upside down V)

-heat intolerance

-dizziness on standing and an increased heart rate on standing (getting tested to confirm POTS too)

-extreme fatigue

The pain occurs multiple times per day and now it affects multiple parts of my body. I struggle to concentrate, and have headaches almost daily. I've had to quit my part time job and move back home with my parents because household chores coupled with doing my degree in Maths is getting way too hard.

Do people with Primary Raynaud's experience all of this? I'm just frustrated because my bloodwork and capillary test didn't show much evidence of secondary raynaud's but I don't know if primary raynaud's causes such widespread and difficult to manage symptoms!!

My doctor is continuing to monitor things and has referred me to his colleague (another rheumy) for a second opinion. I am just struggling to remain positive when I feel like I have no control over my life anymore!!

I'd really appreciate any answers or anecdotes you have to help clarify things for me! (and sorry for the incredibly long post!)

2 Replies

Have you tried cutting gluten and wheat out oif your diet? Many if not all of your symptoms could be due to gluten intolerance. You can be tested for coeliac disease but even if this is negative, you can still have gluten intolerance. There may be other dietary factors too such as dairy or soya but gluten is the most likely. I am speaking from personal experience. My son has raynauds secondary to mixed connective tissue disease and he is so much better since we've changed his diet. Just google your symptoms and their relationship with gluten and you will be amazed at the information you can find. It might take a few weeks to notice improvements but stick with it. By the way most doctors don't realise how common and diverse gluten intolerance can be. The only way to tell if this is your problem is to try without and see if things get better. Good luck!!


I have some of the symptoms you describe, but my Raynaud's is diagnosed as secondary. Has the referral to the rheumy offered any help?


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