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!
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.
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👋
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