I get Raynaud's in my hands and they become numb and painful. But my feet also gets cold and painful during cold weather.
So, I want to know whether people with Raynaud's get problem in their feet too?
Can you get Raynaud's in your feet? - Scleroderma & Ray...
Can you get Raynaud's in your feet?
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dacharya
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Hi dacharya 😊🌿🌸🦋
Yes; I started with my hands only around age 7. By age 12 I got it worse in my feet. In Winter I have had really thick socks on and wore wool insulated boots and still got it in my feet while my mittens kept my hands warm.
Now decades later I can get it anywhere…often my ears and nose.
My diagnosis is Raynaud’s Phenomenon which I got from my late dad. He only had it in his hands and his fingertips would turn violet blue when he got chilled.
I’m so sorry that you are having such suffering with your feet. When you can, put them in only warm water until they warm/pink up. I used to get very painful stinging in my feet after they warmed up. I sure hope you don’t get this too.
I pray that you will not get any worse in the future. Please take care and stay safe especially with the Winter season.
Love and prayers,
EJ 😊🤗♥️🥰🙏🕊🌿🌸🦋
I am very sorry to hear your condition. I also get such problems but my parents don't have it. I think I got it from talcosis.
Parents can be wrong. Can you see your doctor for testing and get a written diagnosis report? It took me 46 years to prove all the condescending doctors my parents and friends they were wrong. My diagnosis of IEM via DNA testing is now in writing. I’m not crazy nor am I faking nor am I doing for attention. Anytime anyone calls me any of that I have written proof now that it’s real. Found out they drop their jaws then shut up pretty quickly after the papers come out.
Terrible to not be believed. Who on Earth would fake such illness. There are easier things to fake if that’s really what is intended.
I believe you❗️ gentle hugs and lots of love to you dear friend.
EJ 🤗❤️🥰🙏🕊️💌🌟🎄🎁❄️⛄️🎊
Your story is mind-boggling but I am glad to know that you are able to prove your condition legitimately. Your case is genetic and that's why proving was possible using genetic testing. But my condition is not genetic because my parents don't have it. I must have got it because of some other reasons like talcum powder use. I am a writer and I don't have any income source except my writing work. Last time, my book was published in US but I am getting very less royalty because of less sales. I don't stay in US and couldn't organize an author event. That's why it didn't reach much audience. So, I am wondering how people with such disabilities make their living in the US?
Your parents might not have it but you can have from other generations that passed it onto you. I have Sjogrens Sicca which came from my dad’s family. He didn’t have but his Aunt did.
Does writing aggravate your Raynaud’s? I find often if I’m doing something with my hands they often flare up.
Also noticed my hands will be fine until I put them in warm water then they turn white. I don’t remember this ever happening before. Usually warm water will pink up my hands not make them white. It’s so strange.
Hope you’ll do better soon.
🤗❤️🥰🙏🕊️💌🌟🎄🎁❄️☃️🎊
I don't think I got it from my family because my parents are sure they don't have anyone in their family history. I am absolutely sure it was caused from talcum powder.
Yes, more I work, more I get the problems. But I get the problem more in my legs and feet. My hands also turns white but not when I put them in warm water. Your case is pretty weird. Did you report that to your GP? In which hospital you were diagnosed?
No I don’t report or mention anything anymore. I just live/suffer whatever with all my conditions. I was 12 when my dad was diagnosed and because I had the same symptoms but worse I knew I had it too. I’m in the USA.
I’m soon to be 74. I’ve lived with this for so long I don’t pay much attention to it anymore.
So, your dad is taking any medication for this if he was diagnosed? Are you not getting any relief from the medications?
Neither of us were on medication. My dad died on 7 November. He never tried anything for his. He froze most of the time. Wore thermal underwear year round with three layers of shirts too. All he had to do was get chilled and had problems.
There are days that I chill to my core and can’t warm up myself.
I am very sorry to hear that and my deepest condolences to you and your family. But I have a few questions in my mind and I hope you won't mind answering them. What was your father diagnosed of 60+ yrs ago? At what age he passed away? Why you and your father were not taking any medications?
Thank you for your sympathy.
My dad was diagnosed with Raynaud’s Phenomenon. He also had other autoimmune diseases. Was blinded by macular degeneration. He had heart (with a fib) kidney failures. The third week of October he took two falls at home. The second one caused a brain bleed and broke his neck. He also had a massive right sided malignant bladder tumor. He developed sepsis. He was 95 when he passed
My dad hated doctors and taking medication. I manage my RP without meds. I’m on too much now and my kidneys aren’t happy with that. Given that my brother and dad both passed from a lot of the same things I’m trying to avoid the same fate.
xx
I feel so sorry for you that I wish I had a magic wand to make you alright. Who is taking care of you? Do you have any children? Diagnosing autoimmune disease 60 yrs ago was quite a challenge and I was wondering in which hospital was your father diagnosed? Were you got diagnosed in the same hospital?
Which medication are you taking for Raynaud's?
Morning dacharya 🤗
You’re oh so right. Autoimmune disease was a newer diagnosis in the early 60s. My dad was diagnosed at a small country hospital no longer around. I spoke to my dad about his symptoms and he showed me what happened to his hands upon exposure. When I copied him the exact same symptoms appeared in my hands too. We both knew I had the same disease except mine progressed to feet also and currently anywhere it wants to go. It happens year round now. On extremely hot days too. If I eat or drink something cold it will trigger it to flare up. I concurrently have Inherited Erythromelalgia from my mother. Whichever one flares up first it triggers the other to follow. Quite an ordeal but I do take meds for a the IEM. I’m still not medicated for RP.
What are you taking for it???
Oh I meant to say we are blessed NOT to have children. We didn’t want our diseases to be passed on to any children so God made us barren to prevent it.
My hubby is a saint..bless him he takes excellent care of me Bless him abundantly.
Yes, I guess we don't belong to this planet and that's why finding it difficult to survive.
I have read about your Erythromelalgia and I have a doubt that you really have it because this is triggered by heat (opposite of Raynaud's) but in your case yours is triggered by cold.
en.wikipedia.org/wiki/Eryth...
I am not taking any medications for my Raynaud's but I use room heaters in the winters to keep my hands and legs warm. I am afraid of taking the medication because of the side-effects.
But now I think I have to find a drug with lowest cure to side-effects ratio.
BTW, what does IEM and RA stands for? Do you mean Inborn errors of metabolism and Raynaud's Phenomenon?
Happy holidays!
I do have IEM inherited Erythromelalgia via DNA blood tests done twice in 1914. It is in writing. My Rheumatologist spoke with multiple world rheumatologists and it was confirmed at the time I was 1 of 3 worldwide with IEM documented. I was born with it but it did not start showing overwhelming symptoms until after he Winter of my 19th birthday. My RP Raynauds Phenomenon didn’t start symptoms until puberty age 12. One of the triggers from my IEM is salt/sodium so it’s difficult to avoid that intake and not trigger episodes of IEM plus our bodies need a certain amount of sodium to stay alive.
Sorry for your sufferings. Take care and abundant blessings.
EJ xx
Thanks for sharing your medical history and sorry for my late response. I was not well for a few days.
Are you sure you were diagnosed in 1914 because if you are 74 yrs then you should have born in 1950.
In which hospital it was diagnosed?
I’m sorry you were ill. Hope you’ve recovered.
My autocorrect has been inserting words I didn’t put in my texts etc. I didn’t discover this until last night. So if things are confusing I’m sorry.
I was born in 1951. The hospital was a very small country one called Ridgewood. Why does this matter.
It sound like you don’t believe me.
I believe you but are you typed a year that was way too back in time, I found it unusual. So, are you taking any drug for your Raynaud's now?
No I’m not taking any meds for my RP. I just do my best to avoid triggers. I’m on too many meds now for autoimmune diseases and I’m not adding any more to the mix.
My dad had it so bad in his hands (only) that his fingertips turned purple. I’m sure if he’d lived longer his would have ulcerated. He was addicted to salt/sodium so badly. He had severe heart disease and HBP plus atherosclerosis and I believe he would’ve benefited from meds but refused to try any due to the side effects.
Are you taking meds for yours???
No, I am not taking for Raynaud's but I am taking other meds for other problems. I am very much confused about my Raynaud's because today I tested with ice on my hands. Only my palm turned white but the finger tips remained pink. However, my fingers became hard and numb. What kind of Raynaud's is that?
Sorry you’re having confusion with symptoms. There are only 2types of Raynaud’s.
Primary means it developed on its own unrelated to another condition.
Secondary means it’s related to another condition like Lupus.
In my case when the diagnosis came no other diagnosis was given at the time.
Since then I have multiple autoimmune diseases so it could be related to to one of them. I no longer chase further investigation for problems I endure. It won’t change my outcome and will just be another one piled on the heap.
Yes your description is possible with Raynaud’s. Mine have changed again. Now my hands are fine until I place them under warm water to wash them. Then they turn white even blotchy with uneven patterns. I actually held something very cold last night that caused my palm to turn white and the fingers were red and swelled with extreme pain. It took several minutes under warm water to return to normal. In my case it has a mind of its own. It changes its pattern and location at will.
It’s best to prevent exposing your hands and feet to cold/icy things as much as possible. Every exposure builds up damage. It might be tiny at first but over time it can destroy your ability to to sense things like dampness. I cannot tell if laundry is dry or damp. My sensory perception is damaged. Example: when I wash my hair my eyes are closed very tightly. When I place my shampoo and rinse in my hand I cannot feel them. I often have too much because I can’t feel them on my palm.
Have you talked to your doctor about this??
Thanks for explaining everything.
I don't have to talk to the doctor about it because when I was waiting to see the doctor outside his room, I suddenly got the Raynaud's attack in my hands because the waiting area inside that hospital was airconditioned. I was feeling the urgency to go out in the sun but my mom didn't let me go because the doctor was about to call me. And when he called, I asked him to turn off the AC, but he couldn't because it was a centralized one with air coming through the ducts above.
After when he checked everything, he gave a printout of the report with the word Raynaud's on it but he referred to some other hospital. This was in 2019, but I was not able to move to another place during the winter so I cancelled the visit. However, I though of visiting the doctor in the summer of 2020 but COVID-19 pandemic started and I became disable after I got covid in 2020.
I was not able to walk for 4 months but someone I recovered and was able to walk. But now I have some disability in my legs. Laster, I visited another Rheumatologists but he said he won't be able to tell if I have Scleroderma.
I am living in a very small city and here there are no too many Rheumatologists and most doctors can't diagnose critical and rare disease like Scleroderma.
Now I am planning to visit some other place for seeing a better doctor..
I also like to tell you that I get wrinkles on my fingers when I wash them with cold water and it happens too quickly. Do you get that too?
Hi dacharya 🤗🌿🌸🦋
I’m so sorry to hear about all your suffering these past few years. Ah yes, Covid caused so many problems. How horrible it caused walking problems/disability. 🤗🙏
I hope you will be able to find a good specialist for Scleroderma. Sorry you have to move to do this.
About my fingers wrinkling with cold water I haven’t noticed wrinkles quickly under cold water they turn white freezing cold and extremely painful. I have to put them under warm water until they recover.
You know that everyone is uniquely created. Even twins have uniqueness. What happens to one person with any condition will uniquely affect them and not always be the same way for others.
I’m 74 in April. My Raynauds has progressed so much with aging. I’m now dealing with my hands turning blotchy patches of white while under warm water. That’s not happened before. It’s so strange now. My now late dad was always triggered by AC and his hands would turn white with purple fingertips. His never did that when younger. I am blessed mine don’t do that either. However my feet/toes do turn purple and frozen stiff.
I hope you’ll get things sorted as quickly as possible. It’s terrible to be ill and unable to find a doctor capable of diagnosing and treating our illnesses. Especially when they on the rare side.
Take care and best wishes for feeling better soon.
Love and prayers.
EJ 🤗❤️🥰🙏🕊️🌿🌸🦋
For years I only had it in my hands which gradually got worse, ulcers included. Now my feet are also affected, toes turn black even in the middle of summer. At the moment I have chilblains on my toes which can be really painful.
Yes definitely, It's worse in my feet than in my hands as I get older, and get really bad chilblains. Compression socks with silver or copper can helped if used as a liner under some other thick socks.
Hi I get in mostly in my feet than my hands. My feet turn white like they are dead. I wear bed socks in bed but then they get too warm & I end up with my feet out of the covers trying to cool them down! I was only diagnosed this year so it a bit new to me. My hands are different they turn navy then red 🤷🏻♀️ I had a capillaroscopy to diagnose & was given Nifedipine.
Which hospital? Can you ask your GP about Felodipine because I heard that it's for the Raynaud's. Does your hands and feet get cold even after taking the medication or you get some relief?
Yes feet are affected just as much as hands. Some people get attacks in their ears and noses too. It’s a vasospastic disorder so potentially could occur on any exposed part of the body.
Yes, I get awful sores in my noes
So, your Raynaud's is for which disease?
I have secondary Raynauds as part of my scleroderma diagnosis but the raynaud’s preceded the scleroderma diagnosis by 15 years, potentially I could have had the scleroderma much longer, I just didn't seek medical intervention and see a rheumatologist until I fell very ill when I was pregnant 22 years ago.
Thanks for explaining your condition. I need one help from you. I think I have Scleroderma but my doctor is not able to confirm it. I need to know how it was diagnosed in your case? Was it confirmed through blood test or any other test? Do you have any lungs disease too?
Yes and my nose!! x
Yes I have it my feet. When I get into the bath you can see which toes are affected and then as they warm up they go purple. I even get it at end of my nose.
Do you get in your ears too?
Yes I believe I do , wear a hat or hood when I go out.
Where is your place? How cold it gets in the winters?
Yorkshire, yes average winters I suppose. I find it worse when it's windy. Got some ski gloves which helps with the fingers but my feet are cold night and day. Don't take any medication for it, tried ginger as was told it's good for circulation but nothing has worked so fast. How about you
I have Secondary Raynauds resulting from Scleroderma. I take Nifedipine and Sildenafil daily. I used to have Iloprost infusion yearly but was offered Sildenafil to try as an experiment and along with the Nifedipine it has worked for me. I am fortunate to have an excellent Rheumatologist and I am guided by him regarding any medication and I am willing to try anything that will give me relief and improve the quality of life. Like all who have Scleroderma I have asked “why me” ??? When I had the diagnosis I had just been widowed and suddenly developed weird things with the worst being a head to toe rash and after frequent visits to my GP with the last diagnosis being scurvy so I paid to go to a Dermatologist who said he hadn’t a clue what the rash was but that I had CREST and needed to see a Rheumatologist. Of course went home read about it on Google and frightened myself to death. The medications I have are not a cure all for all but possibly worth a punt as perhaps asking GP for a referral for the Iloprost infusion. I know it all depends on areas where people live but I wish you well and hope you can improve the quality of your life.
Nice to know that you got a good doctor. So, in which hospital you were diagnosed and which test confirmed that you have Scleroderma?
Do you get improvement in Raynaud's from Iloprost or Nifedipine?
Yes I found Nifedipine combined with Sildenafil has worked very well for me. When I had Iloprost infusions I hated the side effects during the treatment and was relieved to be offered the alternatives and even more relieved when they actually worked for me. I hope you find some relief for your Raynauds soon.
So, when you take Nifedipine do you still get cold feet and hands with any pain like in Raynaud's or you don't get any such issue in cold? Are you able to apply cold water on my legs and hands after taking the drug?
They help me reach a level of tolerance which I feel fairly comfortable with. Re your cold water query…… it’s a definite no!!!!
Hi
Yes I get it in my feet too unfortunately. Tried meds for it but they just give me really bad headaches. I use the hardwares that activate on opening the packet and the feet version too.
Best wishes👋
Yes they are brilliant and on occasions where I need a little extra help I will apply one of the large ones and they are so comforting.
What you mean by hardware?
Hiya, it should say Hand Warmers, but my not so smartphone changed it🫣
Got it. I use room heaters with a fan.
Oh the handwarmers nd feet warmers are for walking the dog. Inside I have heating on nd those fingerless gloves for Osteoarthritis too!
You're hilarious dude.
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