Not sure whether I have primary or secondary Raynaud's?

[Geronimo_s-Girl]

I've recently been diagnosed with Raynaud's, but I have a couple of symptoms that don't seem to fit primary Raynaud's.

My Raynaud's primarily affects my feet, and when I was diagnosed almost every toe had an ulcer. I was diagnosed with primary Raynaud's, but since then I've read that only people with secondary Raynaud's get ulcers, so I wanted to get a bit of advice following on from my symptoms.

All the things that are weird and unexplained:

- rash on my right wrist to half way up my forearm that looks like psoriasis. It's really painful and has split in some places. It also feels like my skin is just tightening around my arm.

- painful toes all the time, but especially at night. Sometimes they are itchy as well

- numbness and pain in my fingers, especially in my thumb. Also my nail beds seem permanently blue/purple, but I don't really get bad attacks in my fingers, I get them more in my toes.

- weight loss and finding it difficult to eat lots at one time, but still hungry. If I eat too much, I vomit

- hair loss and thinning. I have a patch of hair at the front of my parting that has all but gone, and my hair seems to thin out more and more all the time.

- aches and pains in my knees, wrists, fingers, toes, and ankles.

- fatigue all the time. It is honestly so hard to functions sometimes because of it.

I'm on 5mg Nifedipine 3xday and that has helped a lot with the Raynaud's attacks and has pretty much cleared all of my ulcers over 2 months, but not helped with the other symptoms. I did get bloodwork done and everything came back normal including ANA and dsDSNA, and I don't have a high white blood cell count. My veins are apparently all normal as well. I didn't have a capilloroscopy done, but I don't know if I'm being overdramatic or if this constant pain means something. I'm a 21 year old female as well if that changes anything. Any advice would be really appreciated.

[MissusTee]

I would ask for a referral to a rheumatologist for further investigations but it might be worth popping a photo on here of the ulcers so we can check that it definitely are ulcers. They usually don’t heal quite that quickly. There’s also the scleroderma and raynauds group on Facebook x

[amd21]

I agree with MissusTee you should request referral to rheumatology

[Dizzy64]

Hi,If the 5mg Nifedipine isn't getting rid of the pain and tingling in your feet then I would get in touch with your GP, as I started on 5mg and made no difference and the GP put me on 10mg 3xdaily.

I would question your low white blood count as that would suggest something else is going on and would ask for a second blood test to be done.

I have Reynaulds in both hands and only get very small blisters, which for me means my hands are dry and when moisturised disappear.

I can only give my own experience.

But will advise that you keep, moisturising with a non perfume moisturiser i.e Aveeno which I find works well.

Definitely get your bloods sorted, you have to keep on to get to the bottom of this and not give up.

Please stay positive and let that be your strength, I know it is easy for me to say but I have multi disabilities and positivity has kept me going and question everything until you understand what is going on with your body.

I wish you all the best and hope I've helped you a bit.

Take care and kind regards.

[tanya1981]

Hello Geronimo girl! I would definitely get a referral to a Rheumatologist if I were you. You have too many symptoms that link to secondary reynauds.

And I agree with you that ulcers usually are associated with a secondary problem.

Having an ulcer on my finger (only one) was the reason I was properly investigated (and diagnosed) with mild systemic sclerosis. I didn’t have any other symptoms other than Reynauds and the ulcer. My Blood work showed positive ANA, unlike in your case. Perhaps have your blood tested again?! There are different ways to check for ANA and some tests are better than others...