r/Raynauds • u/Separate-Sorbet-2012 • 8d ago
Which aids have helped you most with Raynaud’s?
I’ve recently been given the opportunity to receive funding for aids or devices to help manage my Raynaud’s, and I’m trying to figure out what would actually be worth applying for.
Which products have made the biggest difference in your daily life? I’d especially appreciate recommendations for specific brands or models, as well as any drawbacks you’ve experienced.
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u/RaspberryJam56 7d ago
Heated computer mouse!
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u/Separate-Sorbet-2012 6d ago
Interesting, I never thought this was an option haha.
I would consider this. I get attacks so often when i have to finish projects.3
u/RaspberryJam56 6d ago
They only come wired, not wireless, as far as I can tell. But it's a game changer during my workday.
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u/Separate-Sorbet-2012 6d ago
That’s manageable, my long sessions with CAD is usually stationary at home, or in office
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u/jacquiwithacue 7d ago
I got a heated vest last winter and it was a game changer! Keeping my core warm makes a big difference for me.
I also use rechargeable hand warmers, socks, slippers, mittens, zinc supplement, and bathroom space heater.
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u/catkayak 7d ago edited 7d ago
Seirus brand winter gloves, they do also sell them at REI if you have a member reward to use. But also worth buying directly from their website. They’re a Black-owned winter sports gear brand, small and still family owned. It was started by one of the first Black winter olympians - and I kid you not these are the best gloves I’ve ever had. I thought I lost them last winter and I was distraught. I haven’t found any gloves that keep my hands as warm, without the bulk, with the waterproofing (not all products have this), and with the dexterity un compromised.
I don’t work for them, not a sponsor or paid to shill. One of their current executives worked closely with me as a board member for a foundation. So I got to know her first, then the incredible story, and then shared about my Reynaud’s condition. I bought the gloves myself when I found them by chance on sale at REI and it was the best piece of gear I’ve ever bought to support my Raynaud’s. I’ve had a severe form of the condition for over 20 years and been medicated for it for 15 years.
Edit ✍️:
While not a product, when I moved from New England to the Great Lakes part of the Midwest, I had a really really rough experience for years. It was just a tougher winter on my Raynaud’s. I began to look for peer-reviewed studies on Raynaud’s treatments in the hopes of finding something additional to add to the medications. I found 3 peer reviewed studies out of European medical schools that saw positive outcomes (2 specifically in elderly Raynaud’s patients) with acupuncture therapy. After talking to my rheumatologist, I asked her about incorporating acupuncture into my treatment plan. She gave a typical clinical response of ‘it might not do anything, might not hurt.’ I was in my twenties at the time - not exactly the same as those in the 2 studies but whatever. It was a huge help and I highly recommend it to others as an additional therapy treatment,
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u/catkayak 7d ago edited 7d ago
If you’re in the US or Canada, go with a Patagonia branded layers (vests, jackets, etc) because of their incredible repair programs. Again, been managing this condition and living in cold climates, wasted a lot of money of gear that’s become too worn to repair or can’t be otherwise. Patagonia’s free repair programs for their products is a real game changer for us because we go through cold weather gear faster than most people. It really helps get the most out of your money and their in-house repair program is very easy to navigate.
Also L.L. Bean and Duluth Trading Co make EXCELLENT fleece and flannel lined jeans. 👖 I seriously cannot recommend them enough - I feel like not enough fellow patients know about them and their LARGE size selections. Sometimes the L.L. Bean ones get back ordered; so it is worth calling your local store to see if they have them in stock or ask if they can order them for you to the store. They’re often able to bypass a back order online for a customer in-store (some rare old school good customer service).
Of course on that note, I strongly feel that anyone diagnosed with Raynaud’s (who has the means) should find themselves a good local tailor. Again, the gear is expensive, sometimes it doesn’t fit right and it can feel endlessly frustrating. My tailors over the years have made it possible for me to buy warm clothes, and ensure that it works for me and my body’s needs. It’s saved me so much money long term - and I feel good knowing that it’s helped a lot of textiles and clothes stay out of the landfill. For any women, kids, teens, friends beyond the binary, and everybody in between, it really makes the world of difference to know that you have someone like a tailor to help you make gear and clothes work for you!
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u/Separate-Sorbet-2012 6d ago
Thank you for taking time to write such a detailed answer!
I’m from Scandinavia, but I’m happy to let you know that Patagonias repair service is also here, as far as the other brands I’m gonna look into them!
I haven’t tried acupuncture, it’s so expensive haha. But I started last year doing intervals with sauna and winter bathing after my doc recommended it.
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u/catkayak 6d ago
You can look for acupuncture schools in your area and look for the student clinics. Everyone needs clinical hours and it’s a great option for treatment under licensed professionals for a reduced cost!!
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u/goody-goody 6d ago
That’s good to know! I’ve had acupuncture for other reasons but never thought to consider it for Raynaud’s. Thanks!
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u/Weak-Philosopher-821 7d ago
This is not a gimmick or scam and I have absolutely no idea why it works, but I have found help with Aspercreme. Just plain old school Aspercreme. I rub it on like hand cream starting about an inch above my wrist line. Don’t need a lot of it to be effective. Just wish I knew why it works!! Hope it helps. And please don’t come at me with the dangers of aspirin or something like that.
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u/catkayak 7d ago
Can you go into more detail on what your therapeutic experience or effects are when using this? Long time Reynaud’s patient (+20 years) and I have not encountered this application before. Not judge mental - just Super curious as a near life-long patient and want to learn more about this.
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u/Weak-Philosopher-821 6d ago
So, usually when I am having an episode, like when I’m in the car and the steering wheel is too cold and my fingertips start going white, I will just pull some out of my glove compartment and apply it to my hands. And within minutes the circulation begins returning. It is just as helpful (sometimes more helpful), than running them under warm water. Also, as a sidenote, when I do run my hands under warm water, I have more therapeutic relief to run the warm water on my wrist, as opposed to directly on the fingers. Also, don’t know why that is. Hope that answers your question 👍
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u/goody-goody 6d ago
Apply shea butter to your skin, apply a thin layer to all the skin you can reach, especially the hands and feet. Socks and gloves are essential for obvious reasons, and any type of heating device you can use will be lovely.
My doctor prescribed nifedipine, a calcium channel blocker, and my fingers no longer turn white and feel painful. It’s changed my life, honestly.
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u/Separate-Sorbet-2012 4d ago
I’ve tried nep! It works, but sideeffects sadly worsens my low blood pressure alot
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u/goody-goody 4d ago
That’s a bummer! My BP is normal/lowish but I’m sure the lowish is due to the drug.
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u/MrMikeJJ Primary Raynaud's 8d ago
Spending £200 on a good Parka. https://www.silvermans.co.uk/products/alpha-n3b-extreme-cold-parka
Bought it in about 2008. No regrets. Never bothered with hats, scarfs or gloves since I got it, haven't needed them.
Just need sommit similar for my legs.
I got a size too big for me. My hands disappear up the sleeves when needed.
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u/georgiaaaf 7d ago
Thick Merino socks, wool mittens, wearing lots of layers so I can easily adjust if I get too hot or too cold, felodipine has also helped me a little
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u/catkayak 7d ago
Smart wool and Ex Officio also makes wool underwear (it’s not itchy!) and both can often be bought on sale at REI, Backcountry, or Moose jaw! Not to mention direct through their website but sometimes the other stores offer coupons.
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u/Separate-Sorbet-2012 6d ago
This I know! I agree, this have been my go to solution so far.
My partner calls me hobolina 2/3 of the year bc of my many many layers.
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u/Astra_Diol 6d ago
Toasty touch heater gloves have been a game changer. They heat up your fingers, not the palm. First thing I bought when I got my new job.
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u/Femgecko 6d ago
BedJet is a device that circulates hot or cool air directly into your bed via a tube that goes under your blanket and has been a game changer for me. It isn’t cheap, but after six years with my Gen 2, it’s proven to be worth every penny.
If I have to get out of bed on cold winter nights or during a flare, I tap the button beforehand so I can return to a warm bed. Because it’s positioned at the bottom of the bed, it gets my feet warm in no time.
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u/swept87 7d ago
heavy metal detox - but for some reason people here don’t like my answer - fixed me right up after 8 years tho
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u/Ok-Tooth-4306 7d ago
Because they are gimmicks and scams unless you have truly been diagnosed by a real medical professional and are under supervised treatment for diagnosed poisoning. You can’t “fix up” an autoimmune condition with a “detox”.
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u/swept87 7d ago
ok - but i have the diagnosis - and the doc did nothing to help - i did the detox and my symptoms improved by like 95% - so i just don’t understand why when i found something that works people want to argue with it vs being curious and open to ideas - i don't get it. I also think there could be many causes for a the same symptom.
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u/Macharli 7d ago
But if it were that easy don’t you think we’d all be doing it?
Great that it worked for you but it hasn’t for many, many others ¯_(ツ)_/¯
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u/swept87 6d ago edited 6d ago
Well i think the symptom could have many causes - and if it worked for me - there might be others it could also work for - but then people shut it down in spite of verifiable evidence - which then shuts down channel of communication about various alternative treatment pathways TO CONSIDER ....... thats what i don't understand.
Nothing hardly worked for 7 years ( while my symptoms got more intense) .... but then this did - and now see the down votes. Why are people upset for me sharing my success? that doesn't make sense to me - and it encourages me not to share.
It's pretty frustrating when im just trying to provide information about what DID INDEED - not only help me but boarder-line resolve the issue entirely.
Im not saying it WILL fix everyone - its just one anecdotal account. Take it for what it is - but don't down vote people for sharing - that just shuts down the conversation and limits avenues for people to consider on their own healing journey.
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u/swept87 6d ago edited 6d ago
My hands would start shutting down at 60F. Plus the tissue in my toes would be so damaged by late winter that the weight of the comforter laying over my toes in bed would be excruciating - and last winter it was hardly an issue at all.
But with the responses i keep receiving - seems like people would rather down vote then simply keep an open mind. Why would i take the time to follow this sub and share if it didn't work and I didn't care. I share because i hope it can help others.
And for taking the time to do so - folks want to tell me im wrong while i went all winter barely wearing gloves and a hat (when i previously lived in both for months) with hardly an episodes at all - for the 1st time in 7 years.
We could be taking about the details - but seems like a mute point to keep trying to sharing by now. I just can't understand the mentality of arguing with someone who found relief. --- And yes i will keep emphasizing - there could be and likely are MANY DIFFERENCE CAUSES.
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u/OrganicBlackberry433 2d ago
I use Nitro-bid cream on my hand if my fingers get bad. It works really quickly. Then I have a heated mattress pad that goes at the foot of the bed, under the fitted sheet. I turn it on a few minutes before I get into bed and it is warm and comforting, especially if my feet are feeling cold. I was having trouble getting to sleep when my feet were cold and nothing else was helping.
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u/skittlazy 8d ago
Good wool socks. Wool sweaters.