What is Raynaud's Phenomenon?
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- Опубліковано 27 лис 2022
- Here is my annual Raynaud's Phenomenon video! I also wrote a blog post regarding this topic if you prefer to read.
Raynaud's Blog: healwithsamantha.com/raynauds...
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My name is Samantha Wayne and I have been creating advocacy videos on UA-cam since 2009. This channel was formerly known as Live Hope Lupus and was created in order to start a community for those living with chronic illnesses. In September 2019, I transitioned to a plant-based diet and I have found my body is responding well to it. Along with my lifestyle change, I am learning to alter my focus more on the positive. My current content will focus on my healing journey, what food I am eating, and everyday life. I will still be posting an occasional update about my health. I hope you all are ready to join me on this crazy journey of healing. We are all learning how to navigate this life together. If you have subscribed, thank you! I appreciate your support and look forward to talking with you all in the comments.
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DISCLAIMER: This content within this video is not medical advice. The purpose of these videos are for general education and to share my own experience. This content should not be used to self-diagnose or self-treat any health condition. Please consult a healthcare professional before attempting anything in this video.
I have secondary raynauds thanks to lupus. Its circulation issue so I make sure I get moving like exercising (walking on my foldable treadmill, yoga workouts/stretches), eating well/taking my supplements to help with blood production, keeping my extremities warm (I keep my portable heater, heated blanket, hand warmer, heat pad, scarf, gloves, beanie all handy during colder months)…thanks for sharing your journey fellow warrior.
All great steps to keep the blood flowing. It’s definitely important for us to stay on top of it!
I just commented on your other video and as someone who's suffered with lupus undiagnosed for 24 years almost, and can't stop crying, how can some get tested for it even with every single symptom right off the bat and then some, and some just get dismissed and even worse just given antidepressants, and the whole gambit of mental health meds.
I'm 38 now, and I'm so upset at the doctors who have abused me and used me, I have so many autoimmune disorders, 100% raynaud's, 100% lupus, and I left another comment, but my central nervous system has been BROKEN where don't make testosterone in 20s, chest pain had me rushed to ER ...so many times in terms and 20s, but noone ever cared, just EKG, Ativan and an IV, from 14 to 30 I was going to specialist after specialist, with notebooks and every single one ignored me, I've had endoscopy, colonoscopy, but never had any type of autoimmune test or allergy test even though I'm allergic to my own shadow I used to joke, my own sweat I break out, the sun, animals, so I can't fathom?
Money is all I can think? 24 years and so many x-rays, EKG, and 1 hormone panel, which just ended in testosterone injections at 26, no thought to look into...why this 26 year old man, 12 years ago now, but why he has the testosterone of a man 3-4 times his age, tumor, endocrine issue?
So a bandaid only? No different then the pain medicine I was forced to find myself for 6 years from 19-25, as was only way I had ANY quality of life, but those disappeared eventually and I had no friends or family...HAVE, so pain relief was not an option, so I have just suffered...
And of course, this AWFUL, man, who's never even had a ticket, but wrongly diagnosed with mood disorders, since I once bought pills from the street since the 100s the doctors gave never helped, I was also an "addict" 😢.
Being labeled never goes away.
And so now suicidal most days, as noone gets it, even though I have ANA and could see a rheumatologist, it's been 24 years, my life's gone, and I've spent it believing I'm just....crazy.
Not to mention if they do the rest of the tests, what will be found, who's held accountable? Maybe had they caught it at 14 or 15 and Prednisone even halved what I was going through, along with so many other options they have now to accompany and possibly put in remission, even the new Cart T cells, anything...
Would my life have been decent? Cause now it's either I use my TINY monthly income, to keep just having an apartment, and suffering, dying slow and alone in it, and maybe see a Rheumatologist who gives me some of the things for lupus to FINALLY start, treating something I've had for life.
What if it's too late and kidneys are shot, they don't work right I know that. And I don't drink alcohol ever or smoke cigarettes, pain meds stopped long ago, but my other option is to get on a bus and get a tent and the 1200$ of the 1500$ I get per month, I spend on rent, electric, internet and a phone, while the rest is food and I'm so far in medical debt :( they destroyed me.
That I use that money to find safe pain medication somewhere, as I can't put into words My suffering and what I've lost due to wrong meds, wrong diagnosis, being dismissed, and feeling crazy, literally, lupus attacking my brain and eyes, feet and hands, back even, I stay in bed 24/7 most days...I can't do this anymore, it's not right..
Why do some get care and proper diagnosis and some not even a thought. I saw 12 years ago your first video and almost threw up, as granted I went in with the list of symptoms at 14 also, but I think If you were 14 12 years ago, means I'm 10 years older than you, but still, at 26 if they tested me, I still had prime years...now I am so conflicted, and I went to so many, every specialist except rheumatologist, as...well, noone referred me, and I have never had family or friends, noone who cared, and doctors referred me for My eye issues, my headaches, my chest pain, I don't get it, ANA test is much cheaper then some of the nonsensical tests they did on me prior....some people and places are just con artists and have no actual love or care in their heart... especially if they see you are without an adult or parent like I was, easy to take advantage of.
I always care about helping others, and yet never have I been helped, only hurt, why are people so mean and selfish? I want there to be a God, but I'm planning to take a bus from nowhere Ohio, with just what I can carry, I don't know where I'm going to go, that I can place a tent, and legally pay someone to live on their land, or a park?
Even though I'm weak and scared of wilderness, but more scared of the pain and dying in this dark room alone..
Never stop doing these, you are a good human, and I know you are blessed with parents who love you, and caught it early, I just wonder how much different it would be this far in, if I started Prednisone and Hydroxychloroquine, or methotrexate, or something...
And getting pain medication like I NEED, and what I know works, would be impossible, except from "illegal" places, for top dollar. That's wrong...I think about those folks in tents on the news who have to take poison and aren't educated, and know to test things, whatever the case...how many are just sick? Didn't have parents? And now are addicted to whatever poison and tranquilizers+fentynal, and crap to cut it also in some dealers attic...the system is a crap shoot.
Even the best humans, catholic, nice boy, I can see the world for what it is, and this isn't ok. Especially when you beg for 20+ years and cry and are ignored, that's malpractice.
When i first started watching , i was diagnosed with raynauds, sjogrens, and RA. Fast forward to now… on top of the first three diagnosis, i now have lupus, scleroderma, pulmonary hypertension, interstitial lung disease….
Gosh, so sorry to hear. I have had the same experience with different illnesses. Lots to manage. Hugs. ❤️
I'm still learning about my autoimmune condition but I think it's causing my fingers to go numb which I believe its Raynaud's. I'm going to ask my rheumatologist about it today. Thanks for making this video! I ordered rechargeable hand warmers yesterday ✌️
Hi Samantha, thank you for your video. I have secondary Raynaud's, just like yours...from lupus.
Secondary Raynauds. Lupus.
I have secondary Raynaud’s with RA. It’s been a lot better since I went through menopause, though. Something for you to look forward to haha. The best prevention for me has been keeping my core really warm, which enables the blood to flow to my extremities.
That’s good to know!
just watched your video about moon face, and your face looks so much slimmer omg!! i’m 15 and was diagnosed with nephrotic syndrome in august and i’ve noticed i’ve gained a lot of weight in my face and abdomen from the prednisone. i’m on 60 mg right now every other day for but started 60 mg in september so it’s deff taken a toll on my mental and physical health. hoping my doctor will taper my dosage because i’m so tired of taking prednisone. seeing a big difference in your face made me happy knowing my moon face would eventually go down!
Gosh, I'm in the process of getting diagnosed with lupus and I'm 22 and this started when I was 19. I did have severe depression & anxiety in my teens but I can't imagine having to deal with what I have been having to deal with for the last 2 years when I was 15...I hope your situation improves.
Sorry to hear you’re dealing with that. I had a bad moon face at 15 too. It is tough at that age. Have patience with yourself, eventually you’ll be able to wean to a lower more sustainable dose. Whatever you do, don’t lower without a doctors help as it can be very dangerous. Best of luck to you, Ella!
Hey Samantha, is it common in lupus where your body doesn’t really absorb vitamins? I’ve been taking all the recommended vitamins and dosas (high quality ones) and nothing has changed at all, I still feel the same even though I eat very healthy and exercise, does lupus feel like a presence within you that’s just constantly stripping you? I can’t even put on weight at all just water weight
I have secondary Raynaud’s due to a Autoimmune disease Hashimotos
I have secondary Raynaud’s, all thanks to the lupus. It’s one of the reasons I do no like winter, like at all.
Hope everyone is doing well!
I have Raynaud's and fibromyalgia (plus a couple dozen other things). I was given Lisinopril back in 2000 and have used it since. It helps. It seems to ge genetic - many on my dad's side of the family have it.
Yeah i got this too. Chronic fatigue, headaches, body pain.. i feel all the steroids and medications have made me worse.
I always just thought this was normal for the fingers to burn and ache when exposed to cold. My wife saw me wincing in pain after coming in after working on her car during a particularly cold day...She was like "dude cold feels cold not painful." I don't think I ever knew there to be a difference. I don't do very well in the heat either but I do know I have very high pain tolerance besides temperature related issues so my guess is I probably should go see a doctor...probably won't though lol.
How did u get rid of the moon face before ?
I have secondary raynauds with celiac disease. I might also have Sjögren’s. My dry eye specialist and rheumatologist are following up with me every 6 mos. Though I see my dry eye specialist every 4 mos. I have already needed a lipiflow to regenerate my tear glands.
I’m sorry to hear your dry eyes have been giving you issues. Dry eyes are no fun to have!
Developed Raynaud's after COVID.
Carnivore helps with autoimmune.
Can diet help this condition? Thanks for sharing this information.
Not that I am aware of. Some have said Ginkgo Biloba can help with blood flow but I would check with a doctor first.
Bro I have it in Sweden💀
Tan eik fai l am 22 years malaysia loph😄🎊😊🥚😜🐰hi
While I have lupus I don’t seem to have Raynauds. I wasn’t even aware it was a possibility. I first ran across Raynauds from @LetsaskShogo before my diagnosis of lupus. He’s a Japanese YT-er. He has it. He’s lost part of his ear. He made a very moving video with his wife disclosing his health issues. Just one more thing I have to be concerned about. Thank you for sharing.
Oh wow. Thank you for sharing. I will have to check him out!
@@HealWithSamantha Today he just dropped another video on his channel with an update. He’s trying many things out.
I have this too I came here for my swollen face lol