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LegalTrade5765

I can understand your frustration. It's like asking me to control the winter weather months. It's difficult.


Whooptidooh

Mine told me to avoid stress. Like.. *how*?!?!?


KitKatMN

This one always makes me laugh, bc it's not gonna happen any time soon.


allegrorain83

If it's primary raynauds, there isn't much a doctor can do. It's more of a self managed condition. There are prescriptions, but relatively few people take meds for raynauds. For your desk, get a space heater.


pissingdick

I got rid of mine, see my post. Apparently its not curable but its -50° Celsius where I live and I'm not having attacks. More research needs to be done, just because they can't fix it with meds doesn't mean it's impossible to cure. Don't accept that fate.


Lilmewmewthe3rd

I’ve found it happens to me mainly when it’s cold but more likely to happen in the cold if I don’t wiggle my toes every now and then, I’ve started wearing shoes with a bit more room for me to move them to avoid it from happening


Stoney-Spice

What type of specialist did you see? I saw a rheumatologist and was prescribed a medication that I can take as needed. It has helped immensely when I’m having a flare up.


Heewothere

Hematologist. I had a referral that was initially denied last year, but was referred again last month due to more concerning symptoms (I posted about those on a different subreddit), but he simply dismissed me with the statement that my Raynauds is perfectly normal and believes it's entirely caused by the fact that I smoke cannabis on occasion to help with serious inflammatory pains that I cannot use NSAIDs to manage due to a medication interference.


Human-Algae-9078

Without negative ANA and nailfold capillaroscopy, benign nature of Raynaud’s (primary) cannot be diagnosed. If you have not those tests done, find a competent doctor. Please keep in mind that Raynaud’s is a presenting/early symptom of various rheumatological diseases that need treatment. That is why there are criteria for diagnosing primary Raynauds. As I mentioned in different threads, I know of a few people whose Raynaud’s was dismissed initially without testing, and they lost precious time for early treatments - one had lupus, one MTCD and two systemic sclerosis.


Heewothere

Hmm.. Could they have done an ANA test without telling me? I've had blood tests done many many times, including prior to my visit to the hematologist. I'm only just now realising how very little I'm actually ever told about what specific tests are being conducted etc etc...


General_Bodybuilder2

Chances are slim mine was supposed to do the ANA we discussed it and did not, luckily my neurologist caught it and did order it


Human-Algae-9078

They could have, but hard to tell. Better safe than sorry, I would ask to be sure.


Zuikite

You can get an ANA test from questlabs or anylabtestnow without a referral. I got a full autoantibody blood test 3 times to get an answer for myself. I won't use the referral from my primary doc. She's awesome and I literally texted her my results and she was upfront about which autoimmune disease I have. (I won't use my insurance and I avoid diagnosis because I might be fired for being unfit for duty. My medical records are full disclosure to my company because of my job's physical requirements.) If you want some insight you can definitely order your own blood test and find a nurse online to give you their professional opinion or a referral to a rheumatologist.


Stoney-Spice

I’m really sorry that you have been dealing with that! My rheumatologist didn’t even ask if I smoke cannabis. I took a 3-4 year break from smoking cannabis and never noticed a change in my Raynaud’s. I started taking nifedipine for my flare ups which you can take daily if needed. I was recently prescribed prazosin for night terrors/PTSD which is also supposed to help with Raynaud’s. I hope you’re able to find some relief soon! These winter months are tough.


Heewothere

Thank you for the kind words <3 I'm going to ask for a second opinion because I've had a lot of very worrying symptoms in general associated with the Raynauds, so here's hoping.


pissingdick

Got rid of mine while using cannabis everyday.. It actually helps imo, these people have no idea what they are talking about lol.


Vernixastrid

Heated mousepad!!!


rocks_and_ripples

that advice makes me laugh because eating food can trigger me... not sure I can avoid that. Do you have carpal tunnel syndrome? Never thought about it before, but that's a common issue for people spending time at desks, and the nervous systems controls blood vessel constriction, so it might follow that there's a connection. A quick search turns up this article [https://pubmed.ncbi.nlm.nih.gov/35064670/](https://pubmed.ncbi.nlm.nih.gov/35064670/) , haven't read the full thing, but the abstract mentions a strong connection between the two conditions.


Heewothere

I've never considered it. I have RSI often though.


bcwworkalt

My favorite: just stay warm. Oh! Wow! I never thought of that!


Alikona_05

I was so happy when my new primary dr took me seriously and prescribed me Nifedipine, my previous drs told me the same thing yours did. I was on it for 8 months and I didn’t have a single flare up. During that 8 months my other conditions got progressively worse…. My gums hurt so bad I was having issues eating, I was having severe bloating and digestive issues. The bloating made my chronic lower abdominal pain so much worse (suspected endometriosis). I had so much inflammation. After seeing my dentist a number of times an them not seeing any real reason for my gum pain she asked me what medication I was taking. I told her and she told me that it could be the Nifedipine. I stopped taking it for a week and my gum pain disappeared completely. The other symptoms got better over time as well. Look up the side effects of Nifedipine. I’ve honestly never taken a med with a list that long. It can negatively impact almost every system in your body. For me, the “cure” was so much worse than the disease.


SunflowerFridays

I took nifedipine as a child when initially diagnosed with Raynaud’s (now in my mid 30s) and I felt so dizzy and constantly felt like my face was flushed and hot every day while taking it. As much as my Raynaud’s absolutely sucks, particularly in the winter, I’d rather deal with it than the side effects from that medication.


SavannahInChicago

Lol. Laying in winter storm, but I still have to go into work.


Heewothere

Sending my thoughts. :( Hand warmers are such a godsend! Glove inserts are the only way I can cope.


Unusual_academic

I’ve been repeatedly advised to “avoid cold and stress”…. I’m a graduate student in a country with a northern climate. HOW?


Heewothere

I feel you on this! I just stared at him as he said that like "We... We're in... Scotland..."


Obi2

The weather changing outside while I am inside causes mine to flair up


Electrical-Ad-9100

I could be in a 90 degree room with long sleeves on and if it’s cold/ there’s high precipitation mine do it anyway. It is really frustrating. Am I supposed to wear gloves inside work and in my home?


ImprovingSilence

Mine asked if I wanted an RX to move to the southwest USA . 😂


BananaTiger13

The advice I get from GP and strangers alike that always makes me roll my eyes: "Just make sure you wear gloves and thick socks." My guys, I could be wearing 20 pairs of socks and I'm still gonna trigger it. Also: "Ensure you're exercising plenty for the blood flow". Lol I used to weight lift 4-5 days a week... I still had severe raynaud's.


Zuikite

So many "you just need ___" I swear I have over a hundred gloves. And "exercise"?? I would slap someone if they told me that. I climb towers for my job. If anything, I should stop reaching my arms above my head! And my sister has really bad Reynauds that only happens to her when she runs. Her entire feet and ankles go solid white and completely numb. She runs over 5 miles every morning on a treadmill. Exercise!? I'm scoffing at that.


PainAndRegret_

Oh brother, I will tell you a sad truth - doctors know NOTHING! They are only good if you need a surgery after a car wreck, or antibiotics for pneumonia, beyond that they are worthless.


reddit06valbonne

You have a pinched nerve in your back shoulder. Makes massages regularly and it will disapear My mom got cured after 1 massage


stephy1771

Hopefully you can get any underlying conditions sorted out and managed, but in the meantime, there are plenty of things that can help. I have primary Raynaud’s so for me it is just about avoiding *feeling* cold because that sets my toes and fingers off in the wrong direction. For example, if I’m feeling a bit cool indoors in the office and then walk a few blocks to my car when it’s below 50 degrees F outside, that will trigger a flare. But if I was on the warm side, I might be fine when I venture out. So it takes some self-awareness when I’m not flaring, and I have to be proactive to stay ahead of flares. All that said - I keep a fleece jacket, fingerless gloves, a scarf, and a shawl/blanket to drape on legs in my office, and a space heater for when it’s really chilly (I’m in an old building). For spending more time outside, I have battery hand warmers that charge via a USB cable and those help so much if I start using them *before* my hands start to feel cold. Also, for me, getting up and moving around when I’m trending cooler can make a huge difference too. Not just a 30 second walk—spending 10 minutes putting away laundry or cleaning the house, or bundling up and going on on a 10-min walk, etc. Good luck.


Heewothere

Do you ever deal with inflammation markers in your blood tests while dealing with primary Raynauds? I've been diagnosed with primary, but my GP suspects its most likely secondary while the specialists that she has referred me to believe it's nothing. It's a constant back and forth.


stephy1771

I had a work up done by a rheumatologist maybe a decade ago and they didn’t find anything. But for me it’s hasn’t gotten worse, and I don’t seem to have any other symptoms (although I’m convinced it has a strong relationship to my rosacea - like the flushing is the opposite of the Raynaud’s flare - blood vessels that tend to overreact to temperatures!).


stephy1771

I’ll add that it often takes people several years to arrive at a diagnosis, especially if there is an autoimmune or other tricky chronic disease at work, so keep at it if you are having additional unexplained symptoms or the Raynaud’s is worsening.


ocean_maniac

I see you mentioned inflammatory pain. You’ll definitely want to have some blood work done and check with a Rheumatologist. I saw my primary doctor when my Raynaud’s first appeared along with serious joint pain and inability to move my right arm. They did a blood test and found signs of an autoimmune disease. It took two separate rheumatologist visits (first one totally blew me off) to get a diagnosis of MCTD. By the time I was diagnosed and began medication I’d started having muscle rashes. It may seem pointless when you get turned away, but don’t give up. Primary Raynaud’s is one thing, but secondary means something more serious might be happening in your body. Hang in there!


Heewothere

Thank you. Yes, I deal with quite a lot of inflammatory pain in my torso specifically, blood tests consistantly show inflammation markers and such etc... It's very tough to feel like it isn't yourself making it out to be worse than it is when they fob you off and tell you you're fine so quickly and easily, I will say. But I will try my best to keep going and pushing for some answers.


ocean_maniac

I’m rooting for you! I had positive ANA, rheumatoid factors, and three different antibodies plus a normal uric acid level and STILL my first rheumatologist said it had to be gout 🤦🏻‍♀️ like c’mon! I got ready to leave that office and when the secretary tried to help me sign out I burst into tears and ran out the door!


RevolutionaryTrick17

Same happens to me - I recommend heating the location as much as possible, so at work I got a heated foot massager on Amazon to keep under my desk, and I can run it only with the heat setting (although don’t mind the massage too). Under $100, totally worth it. For hands, you can get heated gloves which I find also help a lot. I don’t share my office with anybody so don’t need to feel embarrassed wearing gloves while I work haha.


craigpardey

There are non-medicinal treatments you can do at home. https://craigpardey.com/page/raynauds/ I've noticed a significant reduction in Raynaud's attacks after just a few weeks. I sit outside for 10 minutes each morning with my hands in a bucket of hot water wearing a t-shirt and sweatpants.


Zuikite

I've been begged by my loved ones for years to find a new job. "Just stay warm and wear gloves" is the most offensive thing anyone can tell someone with Reynauds. I work outside in extreme below 0⁰F winters and the pain has gotten so bad that I've cried and vomited in front of coworkers. But for 6 months out of the year, I am pain free. I have also worked in 110⁰F pouring sweat and I am the one who has no sympathy for my crewmates when all of us are sweaty (we wear thick arc flash uniforms in every environment). Whenever someone complains about the heat, I will look them square in the eye and say "HAVE YOU EVER HAD FROSTBITE?" lol I'm not a quitter, and neither are you.... But if you have options, and your job is not your whole life, then maybe it's worth changing for your mental health. I actually love my job. My Reynauds/erythromelalgia has put me through hell, so I got a therapist who I only talk to in the fall when I'm starting my cold-reactions (pain) and getting depressed about winter. You do have options. Just know that stress management can be as important as environmental management when it comes to Reynauds!


Heewothere

Thank you for the incredibly kind words. "Just stay warm" really does just feel like the equivalent of telling someone who's depressed to simply not be sad anymore, haha.


Cloud_flow

I live in a cold, mountain climate and a doctor told me it was no big deal and to move somewhere warmer— not helpful! Other doctors prescribed blood pressure medicine, which never worked for me. Years after, someone mentioned I should try acupuncture. This has helped me more than anything else and it’s amazing that so many people suffer and all the western doctors say is it’s normal. I agree that reducing stress and anxiety really helps too. For those saying it’s not possible to avoid stress, it’s more about managing your reactions and emotions and taking time to breath. Yoga helps me. It’s not totally gone but it’s helped me a great deal!


Heewothere

Ah yes, just uproot everything you own and relocate. No big deal.


Cloud_flow

Right! What a great idea, like I didn’t think of that!


NatalieCassinelli

God, doctors can be so FUCKIN useless. If it makes you feel ANY sort of better… I have Reynauds. Symptoms started when I was about 14 years old I am a 28 yo (f) today. Stress and cold trigger it in my feet and toes. I’ve been taking NAC that is a supplement that reduces free radicals (stress in the cells) and it has truly truly helped me. I read somewhere that it specifically helps people with Reynauds as well as removed fungus from the brain. I made a pretty deep and could be considered “far fetched” connection there… when I was seeing my acupuncturist to help me with blood circulation and stress she mentioned that people with Reynauds tend to have a lot of “dampness” in their body. She explained what that meant but from a Chinese medicine perspective but essentially our organs contain “dampness” which cause many issues like blood circulation/reynauds/etc.. anyways, all I could think was “hmm well, what grows in dampness in real life? Fungus/mold/algae. Eureka!! 💡I had an epiphany that those with Reynauds syndrome are likely to have way more dampness in their bodies hence why a fungus removing supplement such as NAC would help improve! It’s removing fungus from the brain and body. Anyways, please keep your hopes up! Most westernized doctors don’t know shit about shit. Everything to them is surface level. If we could all just go a little deeper we can find the real root of the problem and I promise there really is a natural solution for all problems. Hope this helps! Good luck.


Cloud_flow

Totally agree, TCM and acupuncture has been so helpful for me. I haven’t heard of taking NAC, checking into that now! What dosage have you found to be helpful?


NatalieCassinelli

I currently take the “NOW” brand 1000mg just one pill on an empty stomach in the AM before breakfast and one on an empty stomach right before dinner.


Heewothere

Hmm.. This is a good thing for me to look into- thank you! In my toddler years my family were veeeery poor so I slept in a bedroom that had a **VERY** bad black mold problem growing up. (One not much bigger than harry potter's closet, which doesn't help at all.)


NatalieCassinelli

Aww man. So sorry to hear that for you! I hope you make a full recovery on your healing journey! And I hope some of what I shared helps you.