Having constant chillblains, burning balls of feet and sore heels and purple feet. I saw GP yesterday. He said I had no pulse in my feet.

[lyngos9]

Has anyone had this problem? He is referring me to a circulation specialist

[Court]

What you describe could be a mirror image of my feet. I have Type 2 Diabetes. controlled by diet, and Parkinsons. I get regular inspection of my feet by a Nurse, and on the last two occasions she has been unable to find a pulse in my feet. On both these occasions I have been referred to a podiatrist and after much searching he managed to find one. My feet and ankles burn and go red most evenings and I have purple toes!!

I have been told that the colour of my toes relates to the almost constant chilblains I suffer from. On reading this, I am sorry that I have been unable to give you any answers.

I was just glad that my toes were not a serious problem and were not likely to need treatment, or even surgery,

[lyngos9 in reply to Court]

I'm not diabetic. Are you getting any help for your chillblains and burning feet. Anything to ease the pain and prevent reoccurring?

[Court in reply to lyngos9]

I find an over the counter ointment called Balmosa helps the chilblains and burning but does not seem to stop problem reoccurring.

[Barnclown]

I'm similar too, including the v low pulse. But i've had severe chilblains & raynauds all my life....and nearly 3 years ago, at 59, I was diagnosed with infant onset systemic lupus.

All these symptoms are at their most severe in my feet, but also affect my hands & head. my purple colouring is mainly raynauds, but because my burning red colouring is simultaneous with my raynauds, and lasts longer and occurs in a daily 24/7 flaring pattern along with the raynauds, I was diagnosed with erythromelalgia too (a condition called "burning feet")

So, in my case these symptoms are secondary to SLE, and have progressed further than they might have, had I revived systemic treatment for my multisystem disease. My consultants & podiatrist tell me that my feet problems re very similar to diabetics'. I'm told to take extra good care of my feet...but I always have anyway....apparently we're at greater risk of gangrene etc

It's good you'll see a circulation specialist. Perhaps would also be good to think about consulting a rheumatologist familliar with autoimmune conditions

Take care, keep smiling (grrrreat photo!)

[lyngos9 in reply to Barnclown]

I know I am not diabetic. Are u receiving any treatment for your chillblains and burning feet?

[Barnclown in reply to lyngos9]

Yes....

First, to backtrack, for decades I've been conscientiously managing my health inc circulation probs, mostly via lifestyle management (the sort of thing

Johnsmith is suggesting: yoga, pilates, the alexander technique, massage, diet, supplements, and OTCs + Rx meds during medical crises & as prescribed for chronic diagnosed secondary conditions (mostly topical steroids, but I've also been managing spine injuries).

My consultants think all those decades of effective management & treatment are probably how I was able to keep lupus under my drs' radar....had I been less successful, my lupus would've been recognised earlier (now I know that I had been diagnosed in the states several times as an infant & teen, but no one told me...so when I moved to the uk at 21, the NHL took me on blissfully ignorant of my medical history)

My lupus re-diagnosis several years ago was due to the symptoms in my feet (& hands) becoming more severe over the course of several years.....regardless of all my good management. My I diagnosis was based on clinical evaluation, examination and history and lupus rx treatment began immediately. Over the past 3 years, my brilliant rheumatologist has discovered which meds I respond best to: nifedipine aggravated all my symptoms, although many take it for raynauds. I've ended up on daily hydroxychloroquine + mycophenolate + amitripyline, with prednisolone tapers as required and I apply rx betnovate ointment on chilblains and various

rashes with good results. I'd say that the hydroxy takes the edge off my joint pain, raynauds & erythromelalgia, and the myco has reduced my cognitive impairment & fatigue, but may also be gradually helping the feet symptoms. At the mo I feel better than I have since the 1970s!!!!!!

Over the past 3 years, I've attended several HU forums for different types of autoimmune conditions. This has helped me to get myself in perspective. These feet symptoms seem to happen to people with various conditions other than lupus, and for all sorts of reasons...they seem not to be uncommon symptoms, and can respond to management & treatment. But, it seems to me, the most important thing is to find out whether there is a primary condition underlying such symptoms. Doing so can take time, and involve quite a lot of trial & error....but, equally, you can be figured out quite quickly

Sorry for such a long, detailed reply, but this is the kind of info that would've reassured me 3 yrs ago when my diagnostic process began.....

Am wishing you all the very best

[johnsmith]

See a yoga teacher fast. You can have no pulse in the feet for a number of reasons - some of which are muscular. While waiting to see a circulation specialist you can do something which will help improve your circulation.

[lyngos9 in reply to johnsmith]

I also have COPD so I'm not very mobile

[johnsmith in reply to lyngos9]

Had to look COPD up. Yoga is a discipline that does not rely on mobility. Its a process whereby you do certain exercises in a particular way within the limitations of your own ability.

The process of doing will helpfully improve things. You must have some sort of network to enable you to access this sort of thing. A friend who can make enquiries to see if they do free yoga sessions at the local Hindu temple could be helpful.

There must be charities in your local area who can help.