Anyone living with Raynaud's?

Howdy all,
I'm new to all this and still finding my way. I was diagnosed about 4 months ago, been suffering for a couple of years. In my mid 50 and generally healthy (although starting to wonder now!!)
The balls of my feet are permanently numb, and react to getting cold. Been to neurologist and had all types of scans but nothing found. My fingers go yellow and freeze to the point of being painful. I wear gloves outside and my fingers get pins and needles that feel like daggers!
Living Sydney Australia the winter is really that cold, but single digit temperatures (5-10C = 41 to 50F) it kicks in.
My problem is being a landscape photographer Icant shoot int he cold anymore as I loose feeling in fingers and cant operate camera.
What I would like to know is how do you get diagnosed with the underlying disease? From research I appear to maybe have Secondary but my GP has said there is nothing that can be done. I really need to find a cause and solution as it affects my livelyhood as well as lifestyle.
Cheers

@jayjaydoubleu. Welcome to Mayo Clinic Connect! There are several discussions on Raynaud’s syndrome. I tried to get the URL’s of other discussions but, I wasn’t successful. Here is one on Raynaud’s you can read through. Sometimes the dates on the discussions are old, but most go up to the current date
https://connect.mayoclinic.org/discussion/raynauds-syndrome/
If you want to find more discussions, it’s pretty easy. Go back to the autoimmune homepage and you will see a search box just above the list. of discussions. Then type in ‘Raynaud’s’ into the box. Hit enter and a long list will come up. each entry has the name of the discussion and when it ended. Pick whichever you want and click on the words in blue, and voila, you’ll go directly to the discussion! Check out the discussions, make a list of questions and ask away!
How do you feel about this computer talking?

Hey jayjaydoubleu, I too have Raynaud's. I have had it for many years. My fingernails and toenails turn blue. My hands and feet get really cold at times. I also cannot pick up ice or mix anything recipe wise with my hands that has cold ingredients without running warm water at the kitchen sink to quickly run my fingers under as its very painful.

There was no testing for this diagnosis for me. I told my doctor my symptoms and he told me I had Raynaud's.

Other autoimmune diseases can go along with Raynaud's, so it may be worth your while to have a complete autoimmune panel done to make sure you are not positive for Lupus, Sjogrens, Rheumatoid Arthritis or Mixed Connective Tissue Disease.

I have both thyroid diseases, Hashimoto's & Graves Disease. You can have very cold hands and feet with Hashimoto's. It has been found there is a connection with Hashimoto's & Raynaud's. If you decide to have a thyroid panel, make sure they do TSH, T3, T4, Thyroid Antiglobulin & Antibody or you could get an incorrect diagnosis. I had to go to an Endocrinologist to get all of my levels checked.

I a praying for you and wish you the best.

Hello Jay Jay, you need to go and see a special dr called a Rheumatologist. And your GP is wrong and you need to find a new gp cos he is not willing to research and get updated on his patients concerns and diseases. I am a nurse and Raynauds is an autoimmune. I have it for many years and it has caused peripheral neuropathy which has caused my bones in my feet to collapse
I have had 5 surgeries to my feet. I see also a podiatrist who is very familiar with peripheral neuropathy. I take meds to open my blood vessels which helps my hands and feet. There are many things that you can do to help your hands. There are gloves with heaters in them. There are socks with warmers in them too. So yes there are things you can do. I live in midwest of US and it gets very cold in winters here too.

csmirat, Thank you so much for this info. I have Fibromyalgia/CFS and Raynaud's tends to go along with that as well. Primary, Rheumatologist & Endocrinologist have never seemed to be too concerned about Raynaud's.

Praying for you and I am so sorry you are battling Raynaud's to such an extent. Blessings....

https://www.raynauds.org/ Raynauds association

I'm 75 and lived with Reynaud's since an early age. At that time I didn't know that my condition had a name. It affected my hands and feet. That I realize now is considered primary Reynaud's. Secondary is when symptom's appear later in life, often when mature adults are experiencing other auto-immune issues. Today I have several auto-immune diseases, but that was not the cause of the Reynaud's.
About 10 years ago I began taking Krill Oil or Fish Oil, several years later I noticed improvement in my Reynaud's. After about 2 years I no longer needed to wear my leather gloves lined with fleece or rabbit fur to shop in the produce isle, previously just touching cold produce would cause my fingers, especially on one hand to turn blue, then white, and feel the classic painful Reynaud's symptoms. I no longer carry gloves in my purse.
I stopped taking the supplement about 1 1/2 years ago and still my symptom's haven't returned.
I have read it doesn't seem to help those with secondary Reynaud's.

I just got diagnosed with Reynaud's and have a conflict with my job. The Doctor told me to wear compression gloves all the time which I absolutely can't. So Im really stressed about work at the moment. I have to go in for another appt in 1 month time to find out how bad my nerves are damaged since i have constant numbness tingling and pain. My hands have been swollen for over a wk straight at this point.

@omarahtopaz. Welcome to Mayo Clinic Connect! I’m so sorry that Raynaud’s is potentially going to interfere with your job. Can you talk with Human Resources to see what accommodations could be made for you while you are in this diagnosis/treatment phase?
I’ve given you a link for another support group on Mayo. The dates may be old, but the discussions continue on for awhile. You might even ask your question in that support group to see what happens. https://connect.mayoclinic.org/discussion/raynauds-syndrome/.
What is the reason that you can’t wear the gloves all the time?

I just joined this group and I hope to find some answers and relief to my Raynaud's and Lupus. Having been diagnosed 5 years ago, my health has continually deteriorated over this time span. My Raynaud's was so bad in May of this year that I had to have a finger amputated. My local doctor has me on Methotrexate injections, Albuterol, Clopidogrel, Folic Acid, Meclizine, Nifedipine, Pantoprazole, Pentoxifylline, Quetiapine, Sertraline and Sildenafil. Nothing seems to work as my fingers turn white, then purple then black. I live in the south so cold is not a big issue year round. I am wondering if Mayo/Cleveland Clinic would be a good place to start. Possibly these doctors have seen other severe cases like mine.