I found out today that the pain and numbness in my feet is neuropathy associated with my APS. Thinking back, it's the first symptom I probably had of the APS if it is in fact because of APS. I've been having the pain and numbness in my feet a while before any of the major APS symptoms showed up.
Anyway...I was wondering, is there treatment for the pain, numbness and discomfort? And
Is it permanent or does it get worse or better over time?
Sorry to hear this. We are not doctors on this site just fellow sufferers.
There are treatments for neuropathic pain but they do come with side effects. You need to be referred to a pain clinic or neurologist for treatment.
They also need to decide the cause of the damage - autoimmune, circulatory or inflammatory to try to reduce further damage and to answer your second question.
Good luck
Hi..I sympathise because I was diagnosed with small fibre axonal neuropathy
( peripheral neuropathy) in 2005 by my hospital neurology dept. and with APS in 2009 by the hospital rheumatology dept. But I am interested to know what authority told you that neuropathy and APS are related. I know that other members believe this, and I suspect this too, but my consultants insist that these are 2 separate conditions and not related. I am hoping to see another neurologist at a different hospital soon to discuss this amongst other things. Was it a rheumatology specialist or neurologist? Would you be able to give me their name?
I can only recommend self- help measures. My neuropathy has progressed to sensory ataxia which affects my walking and balance. I don't get bad pain every day so I don't take medication for nerve pain, which you have to take every day for it to work, and it has side effects.
Also Please could Diane tell me which medicine she takes for her Reynauds which has helped with the numb fingers and toes.
It was my stroke neurologist. He's here in Louisiana. I had a nerve study done recently so he doesn't want to do another one until the summer if the symptoms in my feet persists. I do have an appt with my rheumatologist in February and will discuss with him as well to see if he agrees it's APS related. I only asked him about it on this last appointment because in my mind never related it to APS and exhausted all other avenues of relief. It's not bad enough yet for any remarkable results on the nerve study, that's why he's waiting to do it again later.
Hi...if your nerve conduction tests haven't shown up a neuropathy then maybe you will be lucky and you haven't got it. I also react to things I've eaten with nerve pains and get it in my big toe if I eat a lot of sugar or aspartame and then it goes away. And I am also trying accupuncture ...
I have the same aliment. 6-7 on a pain scale of 1-10. I've tried most of the pharmaceuticals with limited success. The pain continued to wax and wain. I'm a big man so walking long distances has been impossible. Alcohol and sugar noticeably aggravate it. I discovered acupuncture about a year ago. The relief began almost immediately and continues to improve. I am now at a 2-3 on that pain scale. I get poked about 2x per month and can now take longer walks with my wife. It has been side-effect free, cheap and true relief.
He mentioned and tested my B12. Waiting on results. That would be great and a simple fix if it's a B12 deficiency.
I work with this here in Denmark. Neuropathy is the nerves dying and therefore the pain and numbness. There is no cure for it, the pain medication is for your gp to sort out. Every case off neuropathy is different just like how aps is different in all of us. I hope you find your answers, good luck 😊
Hello, I had exactly the same thing 4 years ago although it started in one leg only then started in my right leg. It progressed rapidly within a couple of weeks & docs sending me home with painkillers. The crux is you are in pain due to your peripheral nerves not receiving adequate blood flow. They will begin to die and you will lose feeling in your feet. With me it also started to progress up my legs. My advice now is get moving. Exercise will improve the blood flow. You need to find out the cause urgently before more damage is incurred. I was diagnosed with vascullitis which I found out is a severe symptom of sjorgens. This usually goes hand in with aps & thyroid problems. I'm not necessary convinced I had vasculitis as biop showed none. I think it was more to do with the aps and my body being ravaged with inflammation. Today I still have some nerve damage but a lot has regenerated. At its worst you could have hammered a nail into my foot and I wouldn't have felt a thing. It was agony to walk.
Good luck
Carmen in perth australia
I have axanol neuropathy, which drs insisted was stress and coffee, ridiculous,!! Now on pregablin which helps symptoms but doubt will ever get better
My feet went numb and then tingling -- , now when i try to sit {even in my easy recliner that has always been my savoir } my legs go numb and then hurt and i am unsteady when standing . last Feb. my left heal , skin on callus split wide open but didn't bleed . I could open the wound wide open {about a 1/2 inch deep }. then a definite hole started and just eat the flesh away . I still have to bandage it with Cavlon treatment , Duo-Derm , Tegra-derm , then silk tape .I had blood flow tests , all kinda of different ideas went by many dc's to come to a point they don't know what it is ..??
I see my rheumatologist next month and will talk with him about it. I have been texting positive for one of the sjorgens antibodies for years with no symptoms.
I guess we shall see what he says.
I've had the nerve study in June with no remarkable results.
Thanks everyone.
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