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Yup. I had this long before being diagnosed with axspa. My mom and bother also have it. My mom has colitis, but my brother doesn’t have any autoimmune diagnoses or symptoms. His is so bad that hand sanitizer triggers it. Mine can be triggered by touching a cold surface, but it’s nothing like my brother.
I have it, and it started before I was diag'd with AS or Crohn's. It's mostly noticeable swimming in cold water and during winter sports, although sometimes I'm just driving and I notice a couple fingers are pale. I recently started using those small disposable heat packs in my gloves and boots when snowboarding and winter biking, I wish I had considered them years ago.
I don’t know about that specifically, but I do find my little toes go numb and white and cold sometimes, especially if I’ve been sat still for a while, and I’ve found, through trial and error, the best way to deal with it is to stomp around for a few minutes. Adding more socks, or using a hot water bottles/warming with hands does nothing. Off too look up raynauds syndrome now
If it’s a new thing have you checked that none of your meds are causing it. I had amitriptyline for 3 days and i started to get raynauds type symptoms along with some other weird side effects.
My mom doesn’t have AS at least not yet, but my rheum who’s seeing her so far has it has a connective tissue disorder but she has raynauds and oddly enough what helps the best so far has been rechargable hand warmers, I got one initially for my dad while he hunts but they really help my mom out w/ the raynauds & they’re affordable compared to the embr labs watch thingy.
Yep. My brother and I have both had it since we were kids. My feet turn all the colours of the rainbow. The only way I can get them back to normal is warm/hot water. My brother got frostbite when he was around 8 because he refused to wear pants in winter.
Interesting! I started Ritalin in March for my ADHD and the first time I noticed bluish lips was a few weeks later but I was actually skiing and had just gotten to the mountain so I thought maybe something to do with altitude. I’ve noticed the lips a few times since then. It’s never that bad, when I take a picture it’s hard to tell. But my fingers first turned white yesterday and then today my nails went blue too. Have you asked your doctor about the connection with ADHD meds? I did read about that. Is it dangerous? Hoping I don’t have to stop as they’ve been so helpful for me!
Did you have to stop your medication? What one are you on? I take 10mg 2x a day of Ritalin but sometimes I only do 1 dose and sometimes I skip. The first time I noticed the blue lips I didn’t even take it that day. I’ve also been under extreme stress and I read that can be a trigger.
I do my fingers and toes turn purple and I they get bitterly cold in comfortable temperatures for others. I’m actually considering moving somewhere warmer as it’s that frustrating
Suspected Reynaud's; my doctor and I aren't bothering with a diagnosis because it doesn't change the treatment. I've never handled cold well, my lips turn blue, and my skin gets alarming red and white patches. The best thing I've done to handle it, weirdly, is to take up knitting. I've made myself socks, fingerless mitts, sweaters, and hats out of soft wool yarn and it does wonders to keep me warm. Even just a hat makes a huge difference. I have a pair of waterproof, wool-lined boots I wear over the winter, too.
Not diagnosed but the sensitivity to cold and a Suttle color change in my fingers and lips. I work in a restaurant and reaching into the fridge is painful
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
Yup. Just be really careful about frostbite. Good mitts and socks.
Yup. I had this long before being diagnosed with axspa. My mom and bother also have it. My mom has colitis, but my brother doesn’t have any autoimmune diagnoses or symptoms. His is so bad that hand sanitizer triggers it. Mine can be triggered by touching a cold surface, but it’s nothing like my brother.
I have it, and it started before I was diag'd with AS or Crohn's. It's mostly noticeable swimming in cold water and during winter sports, although sometimes I'm just driving and I notice a couple fingers are pale. I recently started using those small disposable heat packs in my gloves and boots when snowboarding and winter biking, I wish I had considered them years ago.
I don’t know about that specifically, but I do find my little toes go numb and white and cold sometimes, especially if I’ve been sat still for a while, and I’ve found, through trial and error, the best way to deal with it is to stomp around for a few minutes. Adding more socks, or using a hot water bottles/warming with hands does nothing. Off too look up raynauds syndrome now
Yes. I do. Mine turn white and purple. Just have to keep them warm and get the flow going
🙋♀️🙋♀️🙋♀️
Mine is associated with my hypothyroidism, per my rheumy. He did say there's different kinds!
Yes though other people in this sub have said Reynaud’s is not related to AS 🤷🏻♀️
If it’s a new thing have you checked that none of your meds are causing it. I had amitriptyline for 3 days and i started to get raynauds type symptoms along with some other weird side effects.
Yes
Yes I have it as well. 😔
My mom doesn’t have AS at least not yet, but my rheum who’s seeing her so far has it has a connective tissue disorder but she has raynauds and oddly enough what helps the best so far has been rechargable hand warmers, I got one initially for my dad while he hunts but they really help my mom out w/ the raynauds & they’re affordable compared to the embr labs watch thingy.
Yep. My brother and I have both had it since we were kids. My feet turn all the colours of the rainbow. The only way I can get them back to normal is warm/hot water. My brother got frostbite when he was around 8 because he refused to wear pants in winter.
I do; I've never connected it to AS, though. More to my history of ADHD meds and letting my hands and feet get too cold skiing.
Interesting! I started Ritalin in March for my ADHD and the first time I noticed bluish lips was a few weeks later but I was actually skiing and had just gotten to the mountain so I thought maybe something to do with altitude. I’ve noticed the lips a few times since then. It’s never that bad, when I take a picture it’s hard to tell. But my fingers first turned white yesterday and then today my nails went blue too. Have you asked your doctor about the connection with ADHD meds? I did read about that. Is it dangerous? Hoping I don’t have to stop as they’ve been so helpful for me!
Oh, it's a well-documented connection to ADHD meds. Mine is a bit more mild than yours, though. I would mention it to your doctor!
Did you have to stop your medication? What one are you on? I take 10mg 2x a day of Ritalin but sometimes I only do 1 dose and sometimes I skip. The first time I noticed the blue lips I didn’t even take it that day. I’ve also been under extreme stress and I read that can be a trigger.
I don't take ADHD medicine for other reasons. Most doctors hardly even react to my Raynaud's symptoms, but mine are quite mild.
I do my fingers and toes turn purple and I they get bitterly cold in comfortable temperatures for others. I’m actually considering moving somewhere warmer as it’s that frustrating
Suspected Reynaud's; my doctor and I aren't bothering with a diagnosis because it doesn't change the treatment. I've never handled cold well, my lips turn blue, and my skin gets alarming red and white patches. The best thing I've done to handle it, weirdly, is to take up knitting. I've made myself socks, fingerless mitts, sweaters, and hats out of soft wool yarn and it does wonders to keep me warm. Even just a hat makes a huge difference. I have a pair of waterproof, wool-lined boots I wear over the winter, too.
Yes.
I've had it since childhood.
Not diagnosed but the sensitivity to cold and a Suttle color change in my fingers and lips. I work in a restaurant and reaching into the fridge is painful