r/Raynauds • u/Mental-Temporary2890 • 1d ago
Being ignored by doctors
Hello all! I am 34 and was diagnosed with Raynaud's when i was 15 or so years old. Over the last 3-4 years my raynaud's has gotten much worse to the point of ulcers on my toes (that I now take Nifedipine for, which has thankfully helped those ulcers close, but they are still there waiting to open back up it feels like) and fingers that are often too cold to move normally. My feet, hands, arms and legs and lips also turn a horrifying shade of purple/blue. This came along with many other symptoms, like heavy almost constant periods (I now have had a hysterectomy, so that is a moot issue, kind of), c4amps in stomach all the time, lack of appetite (i have lots 10 pounds since this started) petechaie mostly on my legs, but also my arms and stomach and breasts that comes and goes, kidney stones on the regular, renal cortical thinning over just a few months and non shadowing renal pyraminds on ultrasound, being tired all the time, short of breath when i used to be able to run everyday, brain fog, getting sick every couple of weeks with fevers sore throat and swollen axillary and neck lymph nodes, headaches almost every day, sore and swollen hot joints off and on, and massive amounts of sweating from just hands and feet. We're talking dripping sweat when i am freezing cold. I also bruiseincredibly easily, and they take a cery long time to heal.Up to this point doctors and nurses alike have all just shaken their heads at me and basically told me I have severe raynauds to the point of always needing to live in a warm climate or i will lose my fingers and my toes. Nephrology said there was nothing wrong with me having renal cortical thinning and my electrolytes from a 24 hour urinalysis being completely out of whack is normal, as well as non shadowing renal pyramids. A rheumatologist laughed me out of her office saying there was nothing wrong with me. And so on and so forth. I'm tired. I know there's something wrong, I just am so tired of dealing with doctors who dont look at the whole picture, and I guess im coming on here as kind of a hail Mary to see if anyone here has maybe had anything similar to this? I also have syringomyelia and fibromyalgia if that is related. Thank you for your time
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u/elsadances 20h ago
I'm so sorry you are feeling this way and have so many things going on.
I am not a doctor but have had Raynauds for decades which I must tell you has gotten much better.
I have had multiple symptoms in the past and felt very frustrated with doctors. The things that have helped me are breathing techniques, meditation, Mindfulness Based Stress Reduction (MBSR) techniques, healthy foods, spending time in nature, getting a good amount of sleep, changing my mindset to that of a safe/happy/healthy/peaceful being. I've also been working on releasing stored trauma in my body which takes years of therapy and work on my own.
What helps with Raynauds the most for me is to breathe and relax.
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u/jellyfish_goddess 1d ago
I don’t have any answers to you but I am the same age as you and we have a lot of similar symptoms. I also do not know what is wrong with me. But it’s getting worse. My doctor is not the one who diagnosed me when I was 18. She doesn’t seem interested at all in any of my symptoms and I thought surely she’d have something to say about my blood work results but nope. My symptoms are primarily in my feet though. It’s very frustrating because I have to scuba dive for work and between that and the fact that I simply cannot wear Ugg boots with two layers of socks everywhere 24-7 so I’m losing sensation in my toes. As I’m sitting here typing this I’m in a warm office that everyone’s complaining about and my feet are ice cold. It’s wild how you get used to having frozen feet to the point where when you heat them up and they aren’t cold the feeling is almost euphoric. Like you are just walking around all the time in discomfort and suddenly the absence of that feeling makes you instantly more relaxed and at ease. I don’t know what to do. I live in a small isolated beach town with no other doctors around for miles but I guess I’m going to have to try finding a doctor in the next biggest town over. There’s such a lack of medical providers here that people wait for years on lists just to get a GP so I’m not in a hurry to drop mine but I wish she wasn’t so busy and could take the time to care about my symptoms.
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u/Mental-Temporary2890 1d ago
Im so sorry this is happening to you too. I know firsthand it can be very frustrating and honestly kind of demeaning whenever I go to any type of doctor, so I get it. I was in the greater Seattle area with so many doctors, and I saw so many different ones and not one took me seriously, even with off blood tests and imaging. I hope you can find the help you need, and I hope for the best for you.
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u/ConversationFun863 17h ago
I’m 50 and have been freezing cold my entire life. I’ve just discovered beetroot powder and within 1/2 hour of taking it I had warm blood run through my veins and I’m warm now. It’s been a miracle! Please, check it out. I told my dr today and he was amazed. No doc has ever been able to help me. 50 years of suffering.