Raynaud’s in toes?

[Wendy60616]

Hello...I was diagnosed with Raynaud’s about 10 years ago. I always experienced it in my fingers, but now it is happening in my feet, specifically my toes. I also get burning hot feet at night. Does anyone know if this is a result of Raynaud’s, or is a symptom of something completely different? Any suggestions will be helpful! Please advise if you have similar experiences. Thank you!

[fairy56]

Hello Wendy, I have Secondary Raynauds, and my toes are affected too, I can only suggest you make an appointment with your GP, or if you are under the care of a Rheumatology department ring their advise line explaining your symptoms. Can I ask what medication you are on, it may need to be adjusted or changed, hope this helps in some small way, take care and stay warm xx

[Winfield1 in reply to fairy56]

Hi Fairy 56

I’m the same - was diagnosed with secondary Raynauds 16 years ago. At first it was just my fingers that were affected. Then about 10 years later it was fingers, toes, nose, tongue- and my feet and lower legs get hot in bed at night.

I assumed it was the Raynauds progression. I have iloprost infusions for my Raynauds- a few years ago someone who was in hospital at the same time having the same treatment said that was how it was affected her too.

Mention it to your rheumatologist and best of luck

[Quiicas]

Hello! Do you have primary Raynaud or is it associated to other disease?

I think it is better if you make an appointment with you doctor and tell him/her about that burning feet sensation at night, since it is a new and unusual simptom.

Hope you get well.

[Sanmateogirl107]

yes i have it in my feet and hands i can not put them in water it hurts and have trouble numb feet and hands amlodipine which did nothing trying tumeric, pepper, milk, honey, ginger you need rheumatologist and immune speciaist try probiotics , fish oil, hope it helps julie also ask about pain specialist.

[Magsterly in reply to Sanmateogirl107]

San Mateo girl. Do you live in Bay Area?

[Sanmateogirl107 in reply to Magsterly]

yes i do san mateo ca.

[Magsterly in reply to Sanmateogirl107]

Oh! Im in Napa. Hey. Im Not looking for a new friend but its nice to talk to a local who understands and may have good referrals or insight. Are you comfortable Private messaging your email or number? Im not offended if you say no! And may want just one conversation then done!

[Magsterly in reply to Sanmateogirl107]

I just Private messaged you. 😉

[Sanmateogirl107 in reply to Magsterly]

yes i got it. there has been some problems my doctor does not think sclero but my immune specialist has tested me and i keep coming up positive and for lupus. the hardest thing no family support. no one understands what this can do. they say warm water helps to me its very painful. like being stabbed by tiny needles. i can not swallow solid any more. constantly sick. but i found out taking natural medicine works best. tumerick my hands are nice and pink not purple. the hardest thing is the pain. i am immune to my meds. so i do art therapy, meditation, walking, gardening, counseling etc. its just so hard trying to do every day things because i am disabled by a drunk driver. people look at you and think she looks like she has it together but underneath our bodies are screaming in pain that never ends. you constantly have to stay on top of it. i wish people could understand but there is still a lot of ignorance about it.

[Magsterly in reply to Sanmateogirl107]

I’m so sorry for your pain. There was a time when I didn’t get people like us....... Now I do. Very much so.

[Zazzel]

I've had Raynauds my whole life in fingers and toes. Suddenly at age 52 it started changing. This was also when I was going through the change of life. I didn't get typical hot flashes, instead I got burning tingling feet. I don't seem to have the affects of Raynauds in my hands or toes getting white or purple anymore only the constant strange sensations in my feet. Started out as burning and tingling, now about 8 months later its's just a constant strange feeling. I've done every nerve test. Doctors can't figure it out. My doctor said the Rhematologist won't take me on because I don't have severe enough issues.

[foxglove]

I've had Raynaud's since early childhood (now 80!) I've been attending podiatry because of infected toe ..apparently not connected with Raynaud's also toenails crumbling or peeling!! one podiatrist says no connection - his colleague disagrees and thinks Raynaud's is cause . It's the usual ...matter of opinion

[NewbieAP in reply to foxglove]

Have you had your iron, hemoglobin, and serum ferritin levels tested recently? Being ironed efficient can cause those problems with your fingernails and toenails.

[foxglove in reply to NewbieAP]

Very interesting and timely reply! I've just had my annual bloods done and results suggest I am anaemic have to have B12 & Folate, Folate, and Ferritin checks done these levels have been normal in tests I have had done for the past 10 years - I get and keep copies of results. I have fairly recently been put on pregabalin to treat peripheral neuropathy (doesn't work) and have discovered (Google search, know this is NOT advised) but we all succumb to dr. Google, that pregabalin can contribute to this form of anaemia. I shall be hot-footing it to gp..... well whenever I can get appt. to see about stopping the pregab. Health check with nurse next week and will seek her opinion not confessing to Google search of course!

[marie5454]

Hi Wendy, I have exactly the same thing as you, boiling hot burning feet at night, wakes me up a lot. I've had Raynaud's since 2016 and it's steadily feeling worse but the burning sensation feels like something else is going on. See my GP in a couple of weeks so maybe he'll come up with something, I think I'm due more blood tests too. Good luck with your symptoms, I hope you find some relief soon!

[UCTD]

It could be small fiber neuropathy,or erythromyalgia Wendy. I have both which have improved with Gabapentin and Duloxitine. Seems to go with systemic scleroderma and Raynauds. Good luck