Hi lovely people
Hope you’re managing to stay warm today .
Would appreciate any thoughts on funny feet and what could cause them to be white / red / blueish toes . Both hurt like walking on marbles . Dr said doesn’t fit with raynaulds as he thinks they would hurt more when they warm up and they hurt most of time . Combined with the throbbing legs at night . Oh joy 🤩 😳
Gp said pulses feel fine .
Take care all xx 😺
That’s likely autonomic stuff I’d think but secondary Raynaud’s can hurt all the time if combined with autonomic neuropathic. That’s mine. X
Thank you yayoisfab. Do you take medication and if so does it it help ? X
No not good for me - only after ten years of it I’m on Raynaud’s infusions and my neurologist has applied for IViG. Not for the colour change they are just cold but benign but for the auto nom abdo stuff. Don’t think a GP would know though not their expert thing. Ask ur rheumatologist
Thank you 🙏. Yes will speak to rheumatologist as beyond gp especially in the sleepy little town where I live x
My feet are the same, haven’t actually spoken to doc about it, just assumed it was raynaulds causing it! I also suffer with lymphoedema and thought it part and parcel. Perhaps I’ll mention it next time I see consultant.
👋👋👋👋Hi Tiggywoos: glad you posted! some of us are managing this sort of prob…there can be various causes…basically, it’s complex & very hard on us. Am greatly feeling for you! The other day, we had a big informative discussion here about this, so here’s the link to that post…hope something in it helps🍀:
healthunlocked.com/lupusuk/....
Adding a photo collage below showing my version of this
💞💞💞💞 Coco
Every day all year round my 68 year old feet have been going through this cycle of colour, swelling, burning, freezing changes - in my case this has proven to be due to simultaneous Raynaud’s + Erythromelalgia + peripheral neuropathy + small vessel vasculitis + Sjogrens ALL secondary to my infant onset lupus & hEDS. It all started in childhood & has progressively got worse - the past 10-15 years was when it all segued into this severity…
Barnclown thank you so much for sharing . What fantastic pictures( if you know what I mean ) Million dollar question… how and who helped with diagnosis ? X
You’re v welcome! My RP was childhood onset, and my EM set in sometime in m6 early 50s. RP diagnosis was prompt years ago, but EM took longer - happened 11 years ago after the Pain Consultant treating me for CRPS in my right forefoot referred me to a rheumatologist who recognised the EM. BUT then I had many years of all the causes I listed worsening while my rheumatologist tried me on losartan…which only helped so much with the RP, while the EM got even worse
Finally last winter my Dermy was so worried at the slow healing wounds on my feet & ankles, + that the EM made footwear other than sandals unbearable, so she referred me to neurology. Then neurophysiology tests confirmed peripheral neuropathy, which made lightbulb go on in my rheumy’s head: she realised my Raynaud’s & Erythromelalgia had become so severe I had ischemia reperfusion injury, & put me on high dose long term scleroderma protocol sildenafil (viagra) - which is why I was glad to see you’ve also posted on the HU SRUK forum
💞💞💞💞
Barnclown covered it all. I'll just chime in and say I have the red, always painful feet and hands, Sjogrens, with some autonomic portion of this. Rheumatologist calls it erythromelalgia but dismisses it as unimportant. It took me years to have neuropathy addressed and then it was by a neurologist that has a specialization in autoimmune disease. I'm in the US, so my route to diagnosis would probably be different. You do have my empathy--my feet look like yours!
I'm not really sensitive to cold, as in Raynaud's, but I feel heat. I have no temperature control as part of my autoimmune neuropathy. The autonomic part, that is. I get very hot all over year around and never sweat. (Sweat cools the body.) When my neuropathic burning, pinpricks, and electrical shocks are at their worst, from the early evening on, my appendages turn bright red and get very hot to the touch, especially the feet. Since I started IVIG for Sjogrens neuropathy, I've seen some very limited improvement in this.
Why are my feet numb?
COLD feet
Amitriptyline for burning feet. Any side effects?
Diet change 
Blood results... Any ideas? 
