Raynaud's Syndrome: Anyone want to talk about Raynaud’s?

@suetex
The courage for some joining this feed should be commended for sharing their story as they are scared, distraught, and just trying to absorb how much their life has just changed. Sorry to hear about your comment about drs and pharmacists as this has thankfully not been my experience. Also, reading up on medications can be frightening on own, less frightening when first discussed with dr why would need this drug, the benefits of taking this drug, what to expect from this drug, over the possible side effects. Please do not be afraid to ask questions when at dr and make a list of questions at home once you have absorbed all discussed at consult, then call for a Telehealth appointment for additional questions, or better yet, if you can sign up for “my chart” (on phone or laptop) with drs office where you can message the dr directly any questions who respond quicker than waiting for next appointment.

@becsbuddy Yes I take Enbrel which has it under control pretty well. I am thankful for this med which is given to me by the Foundation, free of charge.

@sunshine67
You are absolutely correct on all counts. Good advice.

@becsbuddy
A few months ago I read your 2021 post about the Spoon Theory and my health has improved. Lifestyle changes are not easy but it works. If I don't plan my day well and pay close attention to how I feel there are consequences.
Thank you!

@texasblooms That’s so wonderful to hear! Now, me, I can’t seem to plan my days well. Some days I overdo and other days I just get lost in what I’m doing and time goes by too quickly. Or I get too confused and then hopelessly lost. I need to pay better attention!

Structuring my day, realizing when something is not right, and forcing myself to go home has helped a lot.

Still, everyday is a surprise. Last Sunday I was at a friend's house when a flare started and I knew it was getting bad fast. My sudden exit was not well received.

Last week a wonderful Physical Therapist told me I must care of myself, it takes two to three days to recover from a bad flare. Don't push yourself through recovery. You have a small gas tank and you don't want it to go below 1/4 of a tank. It's comforting when a medical professional understands me.

I have flare phobia and am trying to find a balance and feel safe. I don't want to be too cautious and not have a life.

@thomps26 I am taking 200mg of Solendac and 200mg of Hydroxicloriquine. Both only help me a bit….

I am new to having Raynauds. Not sure whats going on with everything but my body is mad. The cold toes and curling spasms are horrible. My hands curl when I grip my steering wheel and are constantly cold. I use my hot tub multiple times a day. Before and after work. I have hammer and mallet toes now. Craziness. Doctors are trying to figure out whats going on. MCTD is what my Doctors think is going on but labs are mostly normal. Sorry for the rant. Hope everyone is doing as well as they can be under the circumstances.

Your symptoms are unfathomable. It’s good to hear you have a medical team supporting you on your journey. Being new to an autoimmune diseases is emotional. Asking yourself why and what is happening can be tiring.
I suggest keeping a journal and listening to your body for triggers. Like many people I found it difficult to take care of myself and go home when I start to feel a trigger.
Consider researching Raynaud’s support groups online and proceeding with what interests you.
I have a much less intense form of Raynaud’s.
Best wishes and good health, hope your doctors help you feel better real soon.

@sunshine67 Thank you so much for your suggestions. I changed to the ankle compression socks. So much better. My Primary Care doctor has stepped up as she has Raynauds also. Bloodwork states no RA! So glad about that but no answers as to what brought this on. Have changed to nifedipine which has helped more than the amlodipine. The cramping has reduced and the number of episodes of pain and cramping has greatly reduced. Thank you so much! My hubby and I feel so much more supported. The key for me is this blog and help given here!