Sticky Blood-Hughes Syndrome Support
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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?

13 Replies

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


Sorry to hear your in so much pain. Are u sure it's neuropathy pain?

I have renauds disease with the same symptoms. I have treatment for it and both numbness and pain is relieved.

Fully agree with his his diva.

Best of luck Diane


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.

1 like

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.


You may also like to know that neuropathy is also a side affect of B12 deficiency because of Pernicious Anaemia. Many of us with Hughes Syndrome are also deficient in Vit D, Iron and Thyroid. People with Thyroid problems can also have hidden Celiac Disease which again can cause B12 deficiency. Its really important to get your B12 tested and be aware there is a grey zone because like thyroid the "normal" zone in the UK is very low and should be much higher.

My Husband developed neuropathy and because of the shape of his feet was diagnosed with Charcott Marie Tooth Disease. However after being referred to a London Hospital specializing in this and seeing probably the top Consultant in the UK he was told it was not CMTD because he did not carry the genes. After going to the Thyroid UK Conference and attending one of the lectures on Pernicious Anaemia, I suddenly realized that many of my husbands symptoms, including his restless legs could be down to B12 deficiency. I spoke to the GP, got him tested to find he was quite low, not deficient as far as the UK is concerned but in this "grey" zone. GP agreed to give him injections if I administered them along with my own which helped with costs as a trial. Result is that his RL is much better and with luck we may be able to help his neuropathy. Certainly the pain is much better and with luck we have halted any further nerve damage.

Go and get all these other areas checked.

Pernicious Anaemia have a site on this Forum if you need information on B12 deficiency as do Thyroid UK.


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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